1. health and fitness
2. therapy

Friend or Intruder?
Living with an
Implantable Defibrillator:
Patients' and Partners'
Experiences
Suzanne Shirley Reid
Thesis submitted for the Degree of Doctor of Philosophy
The University of Technology, Sydney, 2001
CERTIFICATE OF AUTHORSHIP / ORIGINALITY
I certify that this thesis has not already been submitted for any degree and is not being
submitted as part of candidature for any other degree.
I also certify that the thesis has been written by me and that any help that I have received
in preparing this thesis, and all sources used, have been acknowledged in this thesis.
Signature of Candidate
...................................................................................
ii
ACKNOWLEDGMENTS
In acknowledgment of their generous support, contributions, wisdom and encouragement,
thanks are expressed to:
•
the cardiology staff of the five Melbourne hospitals who readily supported the development
of this project;
•
patients and partners who freely shared their stories in the hope that nurses and other
clinicians might better understand what it is like to live with an ICD;
•
Dr. Anne Adams, Dr. Cheryl Waters, Professor Sharon McKinley and Professor Sue Nagy
whose intellectual guidance fostered this inquiry;
•
Dr. Michael Crotty and Dr. Max van Manen, whose written works and generous dialogue
nurtured the curiosity to question, contemplate and reflect on the intricacies of
phenomenology;
•
the academic staff and fellow students of The University of Technology of Sydney for their
valuable collegial support;
•
the Cooperative Research Centre for Cardiac Technology Sydney (CRC-CT) for financial and
academic support;
•
Helen Hamilton, for advice on editing this thesis; and,
•
Bryan, Katherine and Jennifer for being there in indefinable ways. Having known
vulnerability, you reach out with compassion and understanding to touch the lives of other
people in so many ways. Thank you for making that unique difference.
iii
CONTENTS
CERTIFICATE of authorship / originality.................................................................................. ii
ACKNOWLEDGMENTS ............................................................................................................. iii
CONTENTS ....................................................................................................................................iv
ABSTRACT ....................................................................................................................................xi
WONDERING AND REVIEWING ................................................................ 1
Chapter One .....................................................................................................................................2
INTRODUCTION ...........................................................................................................................2
1.
Background: The problem of ventricular arrhythmias .......................................................2
1.1.1
Introduction................................................................................................................2
1.1.2
Reducing the risk of sudden death: The ICD............................................................2
1.1.3
Patients with an ICD: A growing population............................................................3
1.1.4
Factors contributing to the expanding use of the ICD ...............................................4
1.2
Learning about living with an ICD.................................................................................5
1.2.1
The research problem.................................................................................................5
1.2.2
Becoming curious ......................................................................................................5
1.2.3
Literature representations of living with an ICD .......................................................9
1.2.4
Tensions and deficiencies in extant knowledge .......................................................11
1.3
The research goals, questions and approach.................................................................12
1.3.1
Research goals .........................................................................................................12
1.3.2
Reviewing the ICD program in Victoria..................................................................12
1.3.3
Exploring the experience of living with an ICD ......................................................14
1.3.3.1
Research focus and questions.........................................................................14
1.3.3.2
Research methods...........................................................................................14
1.3.3.3
Anticipated outcomes .....................................................................................15
1.3.3.4
Writing style ...................................................................................................16
1.3.3.5
Parameters and limitations of the study..........................................................16
1.3.3.6
Terminology ...................................................................................................17
1.3.4
Overview of the thesis .............................................................................................17
1.4
Conclusion ....................................................................................................................19
Chapter Two ..................................................................................................................................21
LITERATURE REVIEW .............................................................................................................21
2.1
Introduction ..................................................................................................................21
2.2
Patients' experiences with the ICD ...............................................................................22
2.2.1
Methodological issues..............................................................................................22
2.2.2
The impact of changing technology on patients' experiences ..................................22
2.2.3
Pre-ICD assessment .................................................................................................24
2.2.4
Learning about the ICD ...........................................................................................25
2.2.5
Living with the ICD .................................................................................................26
2.2.5.1
General concerns and physical effects ...........................................................27
2.2.5.2
Psychological adjustment to the ICD .............................................................27
2.2.5.3
Being shocked ................................................................................................28
2.2.5.4
Coping strategies ............................................................................................31
2.2.5.5
Changes in sexual activity ..............................................................................31
2.2.5.6
Quality of life .................................................................................................32
iv
2.2.5.7
Resumption of employment............................................................................33
2.2.5.8
Driving ...........................................................................................................33
2.2.5.9
Female patients' experiences ..........................................................................34
2.3
Partners' experiences.....................................................................................................35
2.3.1
Witnessing the patient's cardiac arrest .....................................................................35
2.3.2
The impact of stresses surrounding ICD implantation.............................................36
2.3.3
Lifestyle changes .....................................................................................................37
2.4
Summative discussion ..................................................................................................38
2.4.1
Promotion of the ICD as a lifesaving technology ....................................................38
2.4.2
Living with an ICD: Problems for Patients and Partners.........................................39
2.4.3
Knowledge deficits ..................................................................................................41
2.5
Conclusion ....................................................................................................................42
EXPLORING AND PRESENTING ............................................................. 44
Chapter Three................................................................................................................................45
METHODOLOGY AND METHOD .........................................................................................45
3.1
Introduction ..................................................................................................................45
3.2
Phenomenology as a mode of nursing inquiry..............................................................46
3.3
Hermeneutic phenomenology: Max van Manen..........................................................49
3.3.1
Background..............................................................................................................49
3.3.2
Philosophical foundations........................................................................................50
3.3.2.1
Hermeneutics and everyday lived experience ...............................................50
3.3.2.2
Understanding human phenomena .................................................................51
3.3.2.3
Phenomenology: Different paths of inquiry ..................................................52
3.3.2.4
Phenomenology and perception .....................................................................54
3.3.2.5
Phenomenology as pedagogy .........................................................................54
3.3.3
Research activities and procedures ..........................................................................54
3.3.3.1
Investigating lived experience........................................................................55
3.3.3.2
Questioning, reflecting, thematic analysis, description ...............................56
3.3.3.3
Phenomenology as written description...........................................................57
3.3.3.4
Hermeneutic phenomenology as critique .......................................................57
3.4
Researching living with an ICD: the processes ............................................................58
3.4.1
The research context ................................................................................................58
3.4.2
The research plan .....................................................................................................59
3.4.3
Primary data: Experiential descriptions .................................................................60
3.4.4
Ethical concerns .......................................................................................................60
3.4.5
Recruiting participants .............................................................................................61
3.4.6
The participants........................................................................................................62
3.4.7
Conversational interviews........................................................................................62
3.4.8
Audiotape transcription and data storage.................................................................64
3.4.9
Documenting the processes......................................................................................64
3.5
Phenomenological analysis, reflection, description......................................................66
3.5.1
Overview: Analysis processes and directions .........................................................66
3.5.2
Analysing the particular: Individual participant experiences..................................68
3.5.3
Analysing the universal: Collective lived experience .............................................69
3.5.4
The writing of themes ..............................................................................................70
3.5.5
Descriptive interpretation: ICD-as-experienced ......................................................71
3.5.6
The phenomenological texts ....................................................................................72
3.5.7
The quality, credibility and plausibility of the inquiry.............................................73
3.5.7.1
Quality............................................................................................................74
3.5.7.2
Credibility.......................................................................................................75
3.5.7.3
Plausibility......................................................................................................75
3.5.8
Disciplinary relevance of phenomenological understanding ...................................76
3.6
Conclusion ....................................................................................................................76
v
Chapter Four..................................................................................................................................77
INDIVIDUAL participant EXPERIENCES ...........................................................................77
4.1
Introduction ..................................................................................................................77
4.2
The participants: Biographical data .............................................................................77
4.2.1
Patients.....................................................................................................................77
4.2.2
Partners ....................................................................................................................80
4.3
Individual participant profiles and experiences .......................................................81
4.3.1
Mr A and Mrs A.......................................................................................................81
4.3.1.1
Mr A ...............................................................................................................81
4.3.1.2
Mrs A ..................................................................................................................83
4.3.2
Mr B and Mrs B .......................................................................................................84
4.3.2.1
Mr B ...............................................................................................................84
4.3.2.2
Mrs B..............................................................................................................85
4.3.3
Mr C and Mrs C .......................................................................................................86
4.3.3.1
Mr C ...............................................................................................................86
4.3.3.2
Mrs C..............................................................................................................88
4.3.4
Mrs D and Mr D.......................................................................................................89
4.3.4.1
Mrs D..............................................................................................................89
4.3.4.2
Mr D ...............................................................................................................91
4.3.5
Mrs E........................................................................................................................91
4.3.6
Mr F and Mrs F........................................................................................................94
4.3.6.1
Mr F................................................................................................................94
4.3.6.2
Mrs F ..............................................................................................................95
4.3.7
Mrs G and Mr G.......................................................................................................96
4.3.7.1
Mrs G..............................................................................................................96
4.3.7.2
Mr G ...............................................................................................................99
4.4
Summative comments.................................................................................................100
Chapter Five.................................................................................................................................101
Being a Patient .........................................................................................................................101
5.1
Introduction ................................................................................................................101
5.2
Being disrupted...........................................................................................................102
5.2.1
Surviving ventricular arrhythmias .........................................................................102
5.2.2
Experiencing the electrophysiological study .........................................................103
5.2.3
Needing and learning about an ICD.......................................................................105
5.2.4
The enduring wait: watching, being watched, anticipating...................................105
5.2.5
Summation: Being disrupted................................................................................107
5.3
Reconstructing life with the ICD ................................................................................108
5.3.1
Being prepared: peri-operative education .............................................................108
5.3.2
Receiving the ICD..................................................................................................109
5.3.3
Pre-discharge advice ..............................................................................................110
5.3.4
Returning home......................................................................................................110
5.3.4.1
Coping with uncertainty ...............................................................................110
5.3.4.2
Receiving mixed medical advice..................................................................111
5.3.4.3
Making sense of the altered body's symptoms .............................................112
5.3.4.4
Regaining confidence in the body and self...................................................114
5.3.4.5
The importance of returning home ...............................................................115
5.3.4.6
The ICD and sexuality..................................................................................116
5.3.5
Restoring a routine.................................................................................................117
5.3.5.1
Being productive ..........................................................................................117
5.3.5.2
Resuming driving .........................................................................................118
5.3.6
Learning to trust the ICD .......................................................................................119
5.3.6.1
Experiencing a single shock .........................................................................120
5.3.6.2
Experiencing multiple shocks.......................................................................120
5.3.6.3
Being in awe of the ICD...............................................................................121
5.3.7
Being responsible toward others............................................................................123
5.3.8
Summation: The nature of reconstructing life ......................................................124
5.4
Appreciating and celebrating life................................................................................125
vi
5.4.1
Achieving a meaningful life...................................................................................126
5.4.1.1
Living on borrowed time..............................................................................126
5.4.1.2
Evaluating the meaning of life .....................................................................126
5.4.1.3
Resolving tensions........................................................................................127
5.4.2
Living with an aberrancy of the stressed body ......................................................128
5.4.3
Moving forward toward new goals ........................................................................129
5.4.4
Summation: Appreciating and celebrating life .....................................................130
5.5
Accommodating the technology .................................................................................130
5.5.1
Being protected: The ICD as friend ......................................................................130
5.5.2
Being occupied: The ICD as intruder ...................................................................131
5.6
Summative comments.................................................................................................133
Chapter Six...................................................................................................................................137
Being a partner ........................................................................................................................137
6.1
Introduction ................................................................................................................137
6.2
Being disrupted: The distressing near loss of the patient ...........................................137
6.2.1
The patient's survival from a sudden cardiac death event......................................138
6.2.1.1
Being distressed: Rescuing the patient .........................................................138
6.2.1.2
Being relieved: When other people rescue the patient .................................139
6.2.1.3
Being exhausted ...........................................................................................140
6.2.2
Waiting for the ICD: Anxiety, apprehension, anticipation ...................................141
6.2.3
Being responsible: Learning about the ICD..........................................................142
6.3
Reconstructing life......................................................................................................143
6.3.1
Being relieved but anxious: The patient's return home.........................................143
6.3.2
Protecting the patient .............................................................................................144
6.3.3
Being protected: Trusting the ICD........................................................................145
6.3.4
Supporting children................................................................................................146
6.3.5
Supporting others...................................................................................................148
6.3.6
Being isolated and vulnerable ................................................................................148
6.3.7
Protecting the self ..................................................................................................149
6.4
Appreciating and celebrating life................................................................................151
6.4.1
Being able to forget the ICD..................................................................................151
6.4.2
Planning a meaningful future.................................................................................152
6.5
Accommodating the ICD ............................................................................................153
6.5.1
Making sense of ICD shocks .................................................................................153
6.5.2
Making sense of the ICD ............................................................................................155
6.5.3
Making sense of the patient's dislike of the ICD ...................................................155
6.6
Summative comments.................................................................................................156
Chapter Seven ..............................................................................................................................158
THE ICD AS EXPERIENCED: FRIEND or INTRUDER?...............................................158
7.1
Introduction ................................................................................................................158
7.1.1
Living with an ICD: The ICD-as-experienced .....................................................158
7.1.2
The hermeneutics of exploring the ICD-as-experienced .......................................159
7.2
ICD-as-experienced: Changing dimensions, possibilities ..........................................162
7.2.1
Anticipating the ICD: Living on the edge and waiting ..........................................162
7.2.2
Being in awe of the ICD as stranger ......................................................................164
7.2.3
Accepting, appreciating, connecting: The ICD as friend......................................167
7.2.3.1
Accepting: The ICD as an instrumental body extension .............................167
7.2.3.2
Appreciating the ICD as facilitator of possibilities ......................................169
7.2.3.3
Embodiment of the ICD: Being at-home with a friend ...............................170
7.2.4
Being occupied and controlled: The ICD as intruder ...........................................172
7.2.4.1
Being occupied by the ICD .........................................................................172
7.2.4.2
Being controlled by the ICD: Thwarted existential options ........................173
7.2.4.3
The ICD's distressing shocks........................................................................173
7.2.4.4
The ICD's potential interference in dying ....................................................174
7.2.4.5
Being alienated: The ICD as a threat............................................................175
7.2.4.6
Desiring the ICD's removal ..........................................................................176
7.2.4.7
Rejecting internal cardiac technology ..........................................................177
vii
7.2.4.8
Elective cessation of the ICD .......................................................................179
7.2.4.9
The ICD as intruder......................................................................................180
7.3
Comprehending the ICD: Worldly horizons of meaning............................................180
7.3.1
Introduction............................................................................................................180
7.3.2
Technology and human existence ..........................................................................181
7.3.3
Technology, nursing and the patient......................................................................182
7.3.4
Medical discourses and the ICD ............................................................................186
7.3.5
The influence of media discourses.........................................................................187
7.3.6
The ambiguity of the ICD-as-experienced.............................................................189
7.3.6.1
The ambiguity of the body-with-ICD...........................................................189
7.3.6.2
The ICD and the ambiguity of existence ......................................................189
7.3.6.3
The ambiguous relationship: The ICD and death.........................................190
7.3.6.4
Living with an ICD: Professional and patient views...................................191
7.4
Summative comments.................................................................................................193
SIGNIFYING: ............................................................................................. 196
STUDY
IMPLICATIONS........................................................................ 196
Chapter Eight...............................................................................................................................197
DISCUSSION...............................................................................................................................197
8.1
Introduction ................................................................................................................197
8.2
Question 1: The nature and meaning of being a patient .............................................199
8.2.1
Overview................................................................................................................199
8.2.2
Being disrupted ......................................................................................................200
8.2.3
Reconstructing life .................................................................................................202
8.2.4
Appreciating and celebrating life...........................................................................209
8.2.5
Accommodating the technology ............................................................................212
8.3
Question 2: The nature and meaning of being a partner............................................213
8.3.1
Overview................................................................................................................213
8.4
Question 3: Understanding the ICD-as-experienced .................................................218
8.5
Summative comments.................................................................................................220
Chapter Nine ................................................................................................................................222
IMPLICATIONS: Knowledge, practice, research .................................................................222
9.1
Introduction ................................................................................................................222
9.2
The findings: Theoretical and practical contributions ...............................................222
9.2.1
Theoretical contributions .......................................................................................222
9.2.2
Implications for clinical practice............................................................................225
9.3
Recommendations for improving clinical practice .....................................................227
9.3.1
The Appointment of an ICD Case Manager ..........................................................228
9.3.2
Staff Education Program........................................................................................228
9.3.3
Patient Education and Support Program ................................................................229
9.3.3.1
The ICD Information Checklist....................................................................230
9.3.3.2
Information Resource Manual......................................................................231
9.3.3.3
ICD Support Group ......................................................................................232
9.3.3.4
A Telephone Support Link ...........................................................................232
9.3.3.5
An ICD Cardiac Rehabilitation Program......................................................233
9.3.4
Community Education Program.............................................................................233
9.3.5
Evaluation ..............................................................................................................234
9.4
Limitations of the research .........................................................................................235
9.5
Suggestions for future research ..................................................................................236
9.5.1
The embodiment of the ICD ..................................................................................237
9.5.2
The experience of multiple ICD shocks.................................................................238
9.5.3
Elective cessation of the ICD.................................................................................239
9.5.4
Living with an ICD: More questions ...................................................................240
9.6
Summative comments................................................................................................243
viii
Chapter Ten .................................................................................................................................244
concluding reflections ................................................................................................................244
10.1
Wondering and Reviewing .........................................................................................244
10.2
Exploring and Presenting............................................................................................245
10.2.1
Being a patient...................................................................................................247
10.2.2
Being a partner ..................................................................................................249
10.3
Signifying ...................................................................................................................249
APPENDICES..............................................................................................................................251
A
Communications: Staff and participants...................................................................251
1.
Letters from cardiologist to patient........................................................................251
2.
Request: Patient's permission for release of details ..............................................251
3.
Explanatory Statement Study 1 (Survey)...............................................................251
4.
Explanatory Statement Study 2 (Current research)................................................251
5.
Consent Form.........................................................................................................251
6.
Ethics Approvals letters .........................................................................................251
B
Preliminary understanding..........................................................................................251
C
Field Guides................................................................................................................251
1.
Interview topics.....................................................................................................251
2.
Field Note Sheet.....................................................................................................251
D
Audit Trail ..................................................................................................................251
E
Working documents: Progressive findings ................................................................251
1.
Patients' aspects of experience, meanings..............................................................251
2.
Partners' aspects of experience, meanings .............................................................251
3.
Participants' recommendations for practice ...........................................................251
F
ICD Information Checklist .........................................................................................251
G
Glossary of Technical Terms......................................................................................251
REFERENCE LIST....................................................................................................................304
ix
FIGURES
Figure 1.1:
Early questions framing the project ........................................................................................ 8
Figure 2.1:
Changes in the ICD size, weight and site.............................................................................. 23
Figure 2.2:
Living with the ICD: Current knowledge ............................................................................. 41
Figure 3.1:
Progressive exploration of living with an ICD...................................................................... 67
Figure 3.2:
Progression of phenomenological analysis ........................................................................... 68
Figure 4.1:
Aggregated patient data (n = 7) .......................................................................................... 78
Figure 4.2:
Individual patient data .......................................................................................................... 79
Figure 5.1:
Being a patient: Themes, Aspects of Experience, Meanings ............................................. 134
Figure 7.1:
Evolution of the relationship between patient and ICD ...................................................... 162
Figure 7.2:
Mediated meaning of the ICD-as-experienced.................................................................... 193
Figure 9.1:
Insights that extend current knowledge of living with an ICD for Victorians .................... 224
Figure 9.2:
Desired improvements to clinical practice .......................................................................... 225
x
ABSTRACT
The implantable cardioverter defibrillator (ICD) is a reliable, cost-effective implanted
device designed to terminate life-threatening cardiac arrhythmias and prevent sudden
death. The recent exponential increase in implantation rates emphasises the need for
nurses, doctors and other clinicians to understand the experience of living with an ICD for
patients and partners. Current knowledge of patient experiences is mostly derived from
overseas studies of specific variables, including physical problems, psychosocial outcomes,
ICD shocks and quality of life issues. Studies of partner experiences focus on psychosocial
concerns.
Using van Manen's (1990) hermeneutic phenomenological approach, this study describes
the experience of living with an ICD for seven Australian patients and six partners.
Experiential descriptions, obtained in tape-recorded conversational interviews, were
subjected to three levels of analysis. The first descriptive analysis summarised individual
experiences of living with an ICD. The second, thematic analysis phenomenologically
described the collective lived experience of being a patient, and of being a partner. Each
description identified a challenging and changing experience through the themes of Being
Disrupted and Distressed, Reconstructing Life, Appreciating and Celebrating Life, and
Accommodating the ICD. For the patient, various everyday interactions, events and activities
meant either being able to trust the ICD as a reassuring protection or experiencing it as an
inescapable intrusive object. For the partner, a trusting reliance on the ICD's protective
security eased the vulnerability and onerous perceived responsibility for the patient's
survival and well-being. Threats to the partner’s restored sense of normality, security and
hope occurred when the patient wanted the ICD removed or discontinued.
The third hermeneutic analysis specifically explored how the ICD, as an implanted
biomedical device, was perceived, embodied and comprehended by patients. This analysis
disclosed the varied, ambiguous existential meanings derived from and accorded to the
ICD's presence, power and potential. The interpretation concluded that the ICD was either
embodied as a trusted and reassuring friend, or existentially rejected as an intruder that
thwarted meaningful possibilities.
xi
Theoretical and practical implications of this understanding of living with an ICD included
several recommendations for improving staff education, as well as practical interventions
for informing and supporting patients and partners. A proposal for implementing these
recommendations concluded with suggestions for future inquiries that would extend
understanding of this increasingly common human phenomenon.
xii
SECTION
A
Wondering
and
Reviewing
1
CHAPTER ONE
INTRODUCTION
1. Background: The problem of ventricular arrhythmias
1.1.1
Introduction
Everyday life is often so busy that scant attention is paid to the heart's rhythmic action and
the occasional skip of a few extra beats. Such is not the case for people who have known
and are at risk of life-threatening arrythmias or abnormal heart rhythms. For them, a few
extra quick beats convey the possibility of something sinister, namely an arrhythmic
episode and, possibly, sudden death.
Ventricular arrhythmias, or severe and potentially life-threatening disruptions in the
heart's electrical pattern and pulse, often present with little or no warning. Hence, even
with first aid and ambulance attention, 70% of victims die before reaching hospital (Leslie
et al. 1996). Sudden cardiac death, or death within an hour of arrhythmic symptoms
(Leslie et al. 1996) is a major health problem. In addition to causing 42% of all cardiac
related deaths, those who do survive face a 30% risk of a recurrence in the first year
(Brugada, Wellens & Andries 1996; Gillum 1989; Saksena 1994; Tchou et al. 1993).
The risk of sudden death is substantially reduced for patients who receive an implantable
cardioverter defibrillator (ICD). Understanding what it is like to live with this implanted,
life-saving device is the intent of the research described in this thesis.
1.1.2
Reducing the risk of sudden death: The ICD
The ICD is an implantable device designed to reduce the risk of sudden cardiac death in
patients with a known susceptibility to ventricular arrhythmias. Its presence reduces this
risk in the year after an arrhythmic event from 30%, to 3.5% (Gillum 1989; Larsen et al.
1994; Lehman, Steinman & Meissner 1994; Mower & Hauser 1993; Saksena 1994; Tresch et
2
al. 1991; Yee, Sharma & Klein 1990). First used in 1980 (Mirowski et al. 1980), the ICD is a
small version of the external defibrillator. It continuously monitors heart rhythm and
corrects detected arrhythmias through electric pacing or internal shocks (Mirowski et al.
1980; Mower & Hauser 1993).
Current models of the ICD vary in weight, size, diagnostic capabilities and therapeutic
options. Each model includes a titanium encased, lithium powered generator, a sensing
lead and a defibrillating lead. Most models combine these leads into a single electrode. The
sensing lead monitors the heart's rhythm while the defibrillating lead conducts required
electric current from the generator to the heart. In addition, the inbuilt memory of the ICD
records instances of detected arrhythmias and correctional therapy (Knight et al. 1997;
Mower & Hauser 1993; Pinski & Trohman 1995).
1.1.3
Patients with an ICD: A growing population
The size of the ICD patient population has expanded rapidly over the past decade, with an
estimated worldwide growth from 30,000 in 1993 to 100,000 in 1998 (Bernstein & Parsonnet
1996; Moss 1993; Mower & Hauser 1993). Within Australia, the limited availability of
skilled staff, facilities and financial resources restricted implantation of the ICD to only 90
patients in the years between 1987 and 1990 (Cowley, Conway & Hailey 1990). However,
there has been a significant expansion of the program since 1991, the year when health
insurance reimbursements were introduced for related costs.
National annual implantation rates have increased from 60 devices in 1992 (National Heart
Foundation 1994) to 340 in the year 1996 to 1997 (Senes-Ferrari 1999). Estimates suggest the
current implantation rate of 2.4 (in males) per 100,000 population will more than triple to
an estimated 8.9 per 100,000 (National Heart Foundation 1996; Senes-Ferrari 1999), or
nearly 1000 new patients each year (Smith, Hailey & Drummond 1994).
State-specific data are less readily available, but the Victorian ICD patient population
reflects the national trend. The number of patients in Victoria increased from 31 in 1990 to
108 by 1995 (Cowley, Conway & Hailey 1990; Reid, McKinley & Nagy 1999). The Royal
Melbourne Hospital has the largest ICD program. From 89 patients in 1991, it expanded to
278 patients by 1996, including some from interstate (Gerloff, J., 1996, pers. comm., 4 Dec.).
3
1.1.4
Factors contributing to the expanding use of the ICD
Several factors contribute to the current expansion of the Australian ICD program. First,
ischaemic heart disease, which predisposes many people to an arrhythmia risk, remains
prevalent (Cowley, Conway & Hailey 1990; Senes-Ferrari 1999). Second, technological
changes and improved therapeutic options extend the ICD's suitability for a wider range of
patients, who also no longer first have to survive one or more cardiac arrests (Estes et al.
1994; Mower & Hauser 1993). Additionally, the introduction of transvenous insertion
approaches obviate the need for major thoracic surgery. Patients now receive their ICD in
the cardiac catheter laboratory (Fitzpatrick et al. 1994; Luceri et al. 1995; Munger et al.
1995). Third, as happened in the USA after 1986 (Mower & Hauser 1993), the introduction
of health insurance rebates for the ICD extended the expansion of the ICD program into
the private health sector. Prior to the introduction of these rebates in 1991 two Victorian
public hospitals inserted ICDs (Cowley, Conway & Hailey 1990). By 1996, five public and
three private hospitals had an ICD program (Reid, McKinley & Nagy 1999).
The fourth contributing factor is the increasing evidence of the ICD's efficacy, reliability
and cost-effectiveness. Initially, this evidence came from extensive retrospective analyses
(Bernstein & Parsonnet 1996; B?cker et al. 1994; de Lissovoy & Guarnieri 1993; Hauer,
Derksen & Wever 1996; Kupersmith et al. 1995; Kupperman et al. 1990; Mower & Hauser
1993). Budgetary concerns about the increasing use of a device costing US$30,000 to
$60,000 resulted in several clinical trials in the mid-1990s. Broadly, these prospective trials
compared the ICD's cost-effectiveness related to other medical treatments (Herre et al.
1995; Luceri et al. 1995; Munger et al. 1995). The results have been extensively analysed
(e.g., Kolettis & Saksena 1994; Levine et al. 1996; Moss et al. 1996; Pag?, 1994; Sweeney &
Ruskin 1994; Wever et al. 1995; Wever et al. 1996; Zipes 1995). In brief, the findings
demonstrated that the ICD significantly reduces morbidity and mortality in survivors of
arrhythmic events and benefit asymptomatic patients whose history predisposes them to
arrhythmias (Estes et al. 1994; Moss et al. 1996; Nissam et al. 1991; Sweeney & Rushkin
1994). Two major recommendations will significantly increase future patient numbers
(Moss et al. 1996). First, the ICD, rather than antiarrhythmic drugs, is the recommended
first line treatment for survivors of a primary arrhythmic event, that is, unrelated to a
treatable metabolic or physiological origin. Second, a prophylactic ICD is recommended
for patients with a high risk of sudden cardiac death.
4
1.2
Learning about living with an ICD
1.2.1
The research problem
Nurses and other clinicians, across a range of health care settings, are increasingly likely to
be caring for patients who have an ICD. Besides specific care related to the ICD, these
patients may require emergency department treatment or admission to a cardiac ward for
arrhythmic or other ischaemic problems. Unrelated medical or surgical problems may
result in their admission to general wards. As well, most will require some form of
community health care. The provision of safe and appropriate care requires clinicians to at
least have a basic understanding of the device and the experience of living with an ICD.
Yet, as revealed in the following discussion of the origins of this inquiry, there is evidence
that many clinicians know little about the ICD and thus, even less of the patient's or their
partner's experience of living with the device.
A brief overview of the related literature in the next section suggests this practice situation
is not surprising. There is a dearth of knowledge about the Australian ICD program or the
experiences of patients and their partners. Current knowledge of living with an ICD relies
on overseas and mainly American research that addresses specific variables related to
patient and partner outcomes. Qualitative studies of the meaning of the experience are
rare. The final section of this chapter outlines a project designed to redress knowledge
deficiencies about the Australian ICD program and patient and partner experiences of the
device. After introducing hermeneutic phenomenology as the theoretical framework for
the study, the chapter concludes with a review of the specific research problem, goals,
questions, methods and the thesis outline.
1.2.2
Becoming curious
Experience as a clinical nurse specialist in the cardiac unit of a regional hospital first
aroused my curiosity about the phenomenon of living with an ICD. In late 1990 one of our
patients survived numerous ventricular arrhythmias and cardiac arrests. Doctors
transferred him to a large Melbourne hospital where he was to undergo heart surgery and
insertion of an ICD. At that time colleagues and I had no knowledge of this device, but
5
upon learning of its functions, wondered how it would impact on the patient's life. He did
not survive the surgery. Despite the resolve to learn more about the ICD, we were soon
distracted by the unit's busyness and changing technology.
The next mention came in the autumn of 1991 when doctors recommended an ICD for my
husband. Although not the focus of this inquiry, it is appropriate to briefly review since it
gave rise to the experiences, concerns and issues that underpinned this inquiry. Three
months before, he survived a collapse at home with a sustained ventricular tachycardia.
Despite three months of treatment with different antiarrhythmic medications, a series of
electrophysiological studies (EPS) revealed his persistent susceptibility to further
arrhythmias.
After another two months my husband received his ICD. Doctors offered a good
explanation of the device, but little of its likely impact on our lives. There were no
instructional brochures or videos about living with an ICD. Cardiology textbooks
concentrated on the ICD's use of internal shocks to correct arrhythmic episodes while each
new article, obtained from the medical library, identified yet another complication or
psychological problem. Seeking the positive reassurance of some good news stories, we
asked our cardiologist to arrange contact with other patients with the device. He declined,
suggesting it was better that we avoid other people's problems. A senior nurse who cared
for patients after ICD implantation explained there was no available information about
living with an ICD because we were "on the fringe of technology". We soon stopped asking
questions. There was a real sense of not wanting to offend the very people whose help we
might well need in the future. In brief, despite initial wound pain and tiredness after
receiving his ICD my husband made a good recovery. Our uncertainty and ambivalence
further abated with his return to light duties at work two months later. Thereafter, aside
from occasional setbacks, he remained relatively well. The passing of time dissipated the
earlier anger arising from the lack of a teaching program, the refusal of the experts to
believe in the need for a support group and the patronising advice from doctors to "have
faith". Time, together with our increasingly busy lives distracted our attention from the
awful vulnerability we had felt a few months earlier.
In October 1992, having now regained a sense of security and routine, we took some time
to more objectively reflect on our experience and that of other patients and partners we
met in the previous 12 months. A paper was prepared to help inform clinical nurses about
the ICD. It offered a simple explanation of the ICD, the related operative procedures and
6
an experiential account of the patient's early recovery (Reid 1993). Publication in The
Australian Nurses Journal ensured dissemination of this paper to most nurses in this State.
Nevertheless, it was still surprising to receive more than 50 follow-up telephone calls over
several months. Cardiac nurses from different hospitals noted how they used the article as
a teaching resource for their patients. One of the many shared anecdotes about patient
experiences mirrored an experience we had at a rural Victorian hospital. This anecdote,
told by different nurses, described a situation in which patients with an ICD sought
medical treatment, unrelated to their device, at the emergency department of nonmetropolitan hospitals. In each situation medical and nursing staff did not know about the
ICD and, frightened of being shocked, avoided touching the patient. The patient or their
partner had to provide reassuring explanations about the ICD before the patient's
presenting problem was addressed.
We also received contact from several patients and partners who had read the paper. They
typically mentioned several issues. First, there was a common belief that doctors and
nurses did not have enough knowledge about the ICD to provide patients with clear
explanations. Second, patients and partners wanted a better idea of what to expect and
how the ICD would affect the patient's recovery and later life. Third, many callers wanted
to talk with, share stories with and learn from others who had been in their situation.
Fourth, partners often wanted to share concerns or anxieties about the patient's recovery
and were disappointed that there was no professional support group. We understood well
their sense of feeling overwhelmed, alone and worried, and their desire for professional as
well as social support.
There was a clear need for health professionals to better understand what it is like to live
with an ICD. With the excuse that I was too close to the subject, I waited for someone else
to take on the task. In the meantime and despite a busy workload, incidental phone calls
and clinical anecdotes further nurtured my interest in the phenomenon of living with an
ICD.
The time to stop making excuses came in the appeal inherent in the following
advertisement, which appeared in a state-wide Victorian newspaper:
[Name] would like to contact other heart patients who have had a [brand]
defibrillator implanted. Please write to [...] (The Herald-Sun, 8 Sept. 1994).
7
Along with several other patients or partners, we responded. We learned that the appeal
had come from the partner of a patient who refused a hospital readmission for an
adjustment of his ICD. He knew of no other patients with an ICD in this State and thought
he was being used as a guinea pig. His partner posted the advertisement as a last resort,
aware that the ICD's protection against another cardiac arrest might be at risk. The patient
agreed to the adjustment a week after the advertisement.
The origins of the current research thus reside in our experience, the feedback from other
patients and partners and realising that the lack of professional understanding of what it is
like to live with an ICD was potentially comprising patient recovery. Tentative plans for
the current research included summarising my preliminary understanding of living with
an ICD (Appendix B: Preliminary understandings).
Figure 1.1 summarises the initial questions and ideas that began to frame the design for the
current research. Clarification and refinement of these questions evolved after reviewing
the professional literature to see what it revealed about living with an ICD and, in
particular, the related experiences of other Australian patients and partners.
Figure 1.1:
Early questions framing the project
• What is my intent?
− describe the patient's, partner's experience of living with an ICD
− gain information about the Victorian ICD program, practices, outcomes
• What is my theoretical perspective (as a nurse, researcher, partner)?
• What are some of the possible theoretical approaches?
− consider implications of living with an implanted mechanical device
− explore the notion of technology as an implanted lifesaving device
− use phenomenology: to explore, understand the relationship of tools/technology &
the body; question if the patient develops a sense of connection with their device;
uncover the meaning of the ICD in relation to specific experiences & the body
− a prospective case study that follows the patient's and partner's journey,
experiences, understanding, coping strategies, differences?
8
1.2.3
Literature representations of living with an ICD
The review of the professional literature revealed only one paper related to the Australian
ICD program, but its specific focus referred to the economic impact of the anticipated
expansion in this program (Cowley, Conway & Hailey 1990). This confirmed the view that
clinicians derived their primary knowledge of patient outcomes and experiences from the
findings of overseas research.
As more fully explained in the next chapter, a review of the related overseas literature
indicated different professional interests and attention to a range of particular variables
associated with patient and partner outcomes. First, medical reports extensively focus on
the ICD and its associated complications (e.g., Broadhurst, Sayer & Nathan 1996; Chitkara
& Vlay 1996; Dasgupta et al. 1996; Hief et al. 1995; Jones et al. 1995; Kassanoff et al. 1992;
Navone, Picone & Boahene 1996; Nunain et al. 1995; Villacast’n et al. 1996). One major
complication is infection of the ICD system for 2% to 11% of patients. Despite intravenous
antibiotic therapy, the risk of a life-threatening septicaemia may necessitate removal of the
ICD generator (Pfeiffer et al. 1994; Tchou et al. 1993; Tresch et al. 1991). Less acute or lowgrade infections are potentially serious for patients who received pericardial-defibrillating
patches as part of their ICD system. Localised inflammatory responses may contribute to a
potentially fatal constrictive pericarditis (Kassanoff et al. 1992). The above body of
literature also identifies other complications that include inappropriate ICD shocks, lead or
electrode fractures, thrombus formation, device failure as well as generator migration into
adjacent organs and tissues. Medical authors clearly define the diagnostic signs,
symptoms, investigations and treatments for a particular complication but seldom discuss
the patient's understanding, reaction or related experience.
The second main focus of the literature relates to the psychological complications
associated with arrhythmia survival and ICD implantation. Contributions come from both
medical and nurse researchers (e.g., Beckerman, Grossman & Marquez 1995; DeBasio &
Rodenhausen 1984; Keren, Aarons, & Veltri 1991; Kolar & Dracup 1990; McCrum 1989;
Menza, Stern & Cassem 1988; Noel et al. 1986; Schuster 1990). As detailed in the next
chapter, many patients suffer considerable anxiety, depression and hypervigilance
(Fricchione & Vlay 1986; Morris et al. 1991; Tchou et al. 1989).
9
The third main focus of the related literature is the reporting of patients' physical and
psychosocial outcomes, concerns and quality of life (e.g., Bainger & Fernsler 1995; Cooper
et al. 1986; Craney et al. 1997; Dubin et al. 1995; Dunbar, Warner & Purcell 1993; Kuiper &
Nyamathi 1991; LŸderitz et al. 1994; May et al. 1995; Molchany & Peterson 1994; Sneed &
Finch 1992; Teplitz Egenes & Brask 1990; Vitale & Funk 1995). Medico-legal aspects related
to patients with an ICD resuming driving of motor cars or returning to work also receive
considerable attention (e.g., Anderson & Camm 1994; Beauregard et al. 1995; Craney &
Powers 1995; Finch et al. 1993; Finch et al. 1997; Jung & LŸderitz 1996a, 1996b, 1996c;
Kalbfleisch et al. 1989; Keelan et al. 1995; Petch 1996; Strickberger, Cantillon & Friedman
1991; Trappe, Sch?hl & Wenzlaff 1995).
Comparatively less research has been conducted regarding the experiences of partners.
Current knowledge more often relies on the evidence presented in clinical or case reports
and from descriptive research of patient experiences (e.g., Badger & Morris 1989;
Dougherty 1994; Dunbar, Warner & Purcell 1993; Dunbar et al. 1995; Simons, Cunningham
& Catanzaro 1992; Teplitz, Egenes & Brask 1990).
The final focus, especially prominent in the nursing literature, is primarily educational,
with various publications reflecting changes to the technology of the ICD and implantation
practices in the past decade. This literature offers clinicians advice about the ICD and the
patient's related perioperative care and information needs, as well as advice for protecting
the ICD (e.g., Brannon & Johnson 1992; Collins 1994; Cooper, Valladares & Futterman,
1987; DeBorde, Aarons & Briggs 1991; Knight et al. 1997; Moser, Crawford & Thomas 1988,
1993; Noel et al. 1986; Schaefer, Chicca & Fisher 1992; Teplitz 1991; Thomas & Moser 1993;
Valladares & Lemberg 1987; Veseth-Rogers 1990). Particular advice is given to helping
clinicians address the specific learning needs of young adults (Dubin et al. 1995; Vitale &
Funk 1995), older patients (Arato, Briggs & Williams 1992) and those with literacy
problems (Harper & VanRiper 1993). In addition, several publications advocate the
provision of professionally organised patient and partner support groups (e.g., Aarons &
Veltri 1993; Badger & Knott 1993; Badger & Morris 1989; Burke 1996; Doolittle & Sauv?
1995; Fricchione, Vlay & Vlay 1994; Molchany & Peterson 1994; Teplitz, Egenes and Brask,
1990). One publication (Menard-Rothe & Callahan 1986) recommends an ICD
rehabilitation program.
10
1.2.4
Tensions and deficiencies in extant knowledge
There is substantive evidence that the ICD reduces the risk of sudden cardiac death. There
is, however, also substantive evidence that in addition to various device complications, use
of the ICD is associated with numerous physical, social and emotional problems for
patients and psychosocial problems for partners.
Three concerns arose during this review of the professional literature. First, an apparent
tension is evident in the fact that patient survival depends on a device that incurs various
problems. Little is known of how this tension affects everyday existence and
comprehension of the ICD. In part, this might be explained by the absence in the literature
of positive accounts of living with an ICD. Surprisingly, however, more than 90% of
patients who have had an ICD for several months recommend it to others in a similar
situation (Davis et al. 1996; LŸderitz et al. 1994; McKinley et al. 1997; Reid, McKinley &
Nagy 1999). Understanding what it is like to live with an ICD and how it is perceived and
comprehended might provide some insights into the transitions or processes involved in
the resolution of this tension.
Second, current knowledge highlights the problems associated in living with an ICD.
Positive stories about patients who experience few problems and resume an active,
independent and meaningful life would nurture hope and confidence among prospective
patients and their partners. Such stories would also complement quantitative evidence of
the ICD's cost-effectiveness (e.g., de Lissovoy & Guarnieri 1993; Hauer, Derksen & Wever
1996; Kupersmith et al. 1995; Kupperman et al. 1990).
The third concern, based initially on personal, clinical and anecdotal experience, indicated
little evidence that local clinicians integrated the available literature advice into their
practice. Two Australian studies, published after the start of the current research,
confirmed this impression. In mid-1995, a retrospective review of the Western Australian
ICD program found that patients had no access to a "... formal education/support program
— before or after ICD implantation" (May et al. 1995, p. 1413). A longitudinal prospective
review of the New South Wales ICD program realised much needed to be learned about
Australian patients' experiences and their quality of life and satisfaction with the ICD
(Pelletier 1998). Most patients in this review reported a good quality of life, but either had
difficulty recalling preoperative information, or false or unrealistic expectations of the ICD.
11
Patients also wanted more information and support in the implantation period (Gallagher
et al. 1996; McKinley et al. 1997; Pelletier 1998).
1.3
The research goals, questions and approach
1.3.1
Research goals
The exploration of living with an ICD described in this thesis completed a two part project
that began with a review of the Victorian ICD program and patient outcomes. Ethics
approval was obtained from the Human Research Ethics Committees of five Victorian
public hospitals with an ICD program and The University of Technology, Sydney.
1.3.2
Reviewing the ICD program in Victoria
The review of the outcomes of the Victorian ICD program, conducted in late 1995 and
early 1996, surveyed adult patients with an ICD. Cardiologists in four of the five public
hospitals that implanted the ICD introduced the survey to patients during an ICD clinic
review. Eligible patients included those whose ICD was implanted at least one month
earlier, who resided in Victoria and who could read, understand and respond in English.
Eligible patients were given the option of not participating in the project. Those who
consented were mailed a questionnaire. At the fifth hospital, the cardiologist provided
direct access to patients' names and addresses.
Survey questions were based on the outcome related issues evident in the review of the
professional literature as well as questions derived from local nursing practice. In addition
to demographic information, data were obtained about the reason for ICD insertion, device
type, duration since implantation, related information sources and access to specific
education or support facilities. Outcome-related questions explored the patient's
experience of ICD shocks, use of health care facilities, pre and post ICD employment and
driving, recommendation to others to accept the ICD, as well as current quality of life.
Respondents also offered various qualitative comments about their experiences. Findings
of the descriptive data analyses have seen been published and presented at professional
forums (Reid, McKinley & Nagy 1997, 1999).
12
A brief review of the results provides insight into the background context of the current
study. Of 108 eligible Victorian patients, 89 consented and were mailed a questionnaire
and 78 returned completed forms. Findings thus represented 72% of the total population
with an ICD and 88% of those surveyed. The mean age of respondents was 63 years (range
19-79). Most (85%) were male, lived with someone else (82%), had at least 12 years of
education (78%), had suffered a previous myocardial infarction (83%) and received an ICD
after experiencing a ventricular arrhythmia (78%). The median time since ICD insertion
was 16 months (range 1-88). Location of the ICD generator was either in an abdominal
surgically created pocket (51%) or a similar pectoral pocket (49%). Most respondents with
a pectoral device received their ICD in the preceding two years.
The highest ranked source of information about the ICD was the implanting cardiologist,
closely followed by the manufacturer's booklet. In order of decreasing importance, other
information sources included the cardiac technician, another medical specialist and
nursing staff, with local doctors the lowest ranked source. Although most patients
eventually acquired enough knowledge through their own resources, there was a strong
desire for more education and support around the time of ICD implantation. Most patients
wanted a hospital teaching program (64%) or support group (71%), but few (7%) had
access to either resource.
Over half the survey respondents (54%) had been shocked at least once and, using a 10
point visual quality of life scale (1=poor, 10=excellent), reported a lower mean score (5.8, ±
2.2), than those yet to be shocked (7.1 ± 2.0; p <0.05). Factors of age, gender, location or size
of the generator or discomfort had no significant impact on the quality of life score. Most
people (72%) later resumed their usual daily activities, including driving (76%), and 96%
recommended the ICD to others in similar situations (Reid, McKinley & Nagy 1999). These
findings were comparable with patient characteristics and outcomes reported in the
overseas literature. As well as contributing needed information about the Australian ICD
program the findings supported the need for improved patient education and support.
13
1.3.3
Exploring the experience of living with an ICD
1.3.3.1 Research focus and questions
This thesis describes a hermeneutic phenomenological exploration of the phenomenon of
living with an ICD, based on the experiences of a group of Victorian patients and partners.
The intent was to extend the survey findings by providing understanding and insights into
the everyday context, events, issues, tensions, meanings and transitions in the patient's and
partner's experience.
The three specific questions that framed this exploration were:
•
What is the nature and meaning of being a patient with an ICD?
•
What is the nature and meaning of being a partner in this situation?
•
What is the nature and meaning of the phenomenon of living with an ICD, that is, how is
this surgically implanted device bodily experienced, understood, and integrated?
1.3.3.2 Research methods
Hermeneutic phenomenology offered the most appropriate way of addressing this
exploration of the phenomenon of living with an ICD and answering the research
questions. According to van Manen, whose work guided this research, this qualitative
mode of inquiry seeks to "...make some aspect of our lived world, of our experience,
reflectively understandable and intelligible" (1990, pp. 126-127). As described in Chapter
Three, it re-focuses awareness on the original experience of a particular phenomenon.
Following van Manen (1990), it descriptively explores individual experience to understand
the meaning of the phenomenon being experienced.
Volunteer patients and partners, contacted through the preceding survey, participated in
relatively unstructured in-depth conversations about living with an ICD. These
conversations provided detailed insights into their experience, related stories and their
understanding of the ICD. Recorded conversations were transcribed. Transcripts, as
textual data, were subjected to three iterative layers of analysis. The first layer of analysis
14
summarised and described individual experiences. Next, reflective, thematic analysis
produced a descriptive understanding of the patient's or partner's collective lived
experience of the ICD, that is, what the experience is like and what it means within this
context. The final layer of analysis provided a philosophically informed interpretive
understanding of how the ICD is perceived, understood and bodily experienced or
embodied.
1.3.3.3 Anticipated outcomes
Two outcomes were expected from this research. First, the descriptions offered by
participants were likely to extend the information obtained in the earlier survey (Reid,
McKinley & Nagy 1999) with detailed qualitative insights of how Victorian patients and
partners experienced living with an ICD. It was anticipated that these descriptions would
include practical suggestions for improving particular aspects of the Victorian ICD
program.
The second anticipated outcome related to the use of a hermeneutic phenomenological
mode of inquiry. Such a perspective has not previously been reported with respect to the
phenomenon of living with an ICD. Using experiential participant data as specific
examples, this study presented interpretive descriptions of the phenomenon's nature and
meaning. The intent is to understand the nuances, subtleties, dimensions and complex
meanings of being a patient and of being a partner and, inherently, how the ICD as an
implanted technology, was perceived, bodily experienced and embodied. Understanding
the phenomenon of living with an ICD as it impacts on the lived experiences of patients
and partners is important to nurses, doctors and others who care for patients and partners.
This understanding is expected to complement the current focus on related issues, such as
device efficacy and complications, or patient and partner outcomes as defined by their
physical problems, psychosocial adjustment difficulties or quality of life. Understanding
how patients perceive and bodily experience the ICD is also important for biomedical
engineers and others involved in the design and development of new devices. Finally,
aside from its clinical relevance, insights of what it means to live with this implanted lifesaving technology may be included into philosophical debates about the relationship
between technology and human existence. To date, these debates refer to technologies that
15
are external to the body (e.g., Heidegger 1962, 1977; Idhe 1984, 1990, 1996; Kroker 1984;
Merleau-Ponty 1962).
1.3.3.4 Writing style
Three issues frame the written format of this thesis. First, headings and reference citation
follow the Harvard approach explained in the Style Manual for authors, editors and printers
(Australian Government Publishing Service 1995). Second, where appropriate, the firstperson writing style reflects my place as a research tool in this study. In turn, this
acknowledges how "[t]he self, the 'I', is part of writing and research, and interacts with
ideas and people" (Shakespeare, Atkinson, & French, 1993, p. 4). This 'self' is a mother of
two teenage daughters and a nurse involved in part-time clinical practice, most often in a
cardiac setting in a large regional hospital. Financial support from the Cooperative
Research Centre for Cardiac Technology, Sydney made it possible to relinquish an
additional full-time academic teaching role. Being a partner of a patient with an ICD was
particularly significant. While it may have facilitated some aspects of this inquiry it also
necessitated, it necessitated careful attention to minimise the risk of personal bias. As
explained later (Chapter 3.4.9), this process involved critical reflective journalling and
regular peer review and critique.
Third, this thesis deliberately uses the word 'receipt' when referring to the patient's receipt
of an ICD. This word avoided cumbersome alternatives, such as accepting, getting,
acquiring, possessing or being implanted with an ICD. Given the interest in the embodied
meaning of the ICD, the word 'receipt' also offered a neutral alternative to unintended but
subtle meanings inherent in words such as 'accepting' or 'possessing'. This thesis also uses
the term 'implanting cardiologist' to distinguish between this doctor and other
cardiologists.
1.3.3.5 Parameters and limitations of the study
This study presents an understanding of living with an ICD derived from the detailed
descriptions provided by seven Victorian patients and six partners. Despite this parameter,
the evolving understanding may have some applicability for other Australian patients and
16
partners. The biographical and experiential situation, and associated concerns of patients
shared many similarities to other patients in Victoria (Reid, McKinley & Nagy 1999),
Western Australia (May et al. 1995) and New South Wales (Gallagher et al. 1996; McKinley
et al. 1997).
These descriptions also provided comparative insights into differences between living with
the larger, abdominal ICDs implanted in the early 1990s and the experience of living with
the smaller pectoral devices introduced in the mid-1990s. In addition to understanding the
nature and meaning of living with an ICD, the findings help elicit an interpretive
understanding of the complexity of device embodiment.
All participants in this study had an Anglo-Saxon heritage which limited consideration of
whether cultural belief systems shaped perception and integration of the ICD. This
limitation probably reflected an unintended omission of questions about ethnic origins in
the earlier survey.
Finally, this research occurred before the anticipated use of the ICD as a prophylactic
treatment for at risk patients who have not yet sustained life-threatening arrhythmias
(Brugada, Wellens & Andries 1996; Kolettis & Saksena 1994). It thus assumed that an
integral aspect of living with an ICD included the earlier impact of arrhythmia survival
and the related need for numerous investigative medical procedures.
1.3.3.6 Terminology
This work incorporates several complex terms related to medical conditions, diagnostic
investigations and technical aspects of ICDs. Each term is explained with its initial use in
the text and also in the Glossary of technical terms (Appendix G).
1.3.4
Overview of the thesis
Chapter Two reviews in detail what is revealed in the professional literature about living
with an ICD. The review confirmed specific knowledge deficits, clarified the research
questions and provided support for the proposed research.
17
Chapter Three outlines van Manen's (1990) approach to hermeneutic phenomenology and
explains its theoretical influence on each of the research processes. The chapter describes
the cooperation received from various staff at the participating hospitals and the processes
involved in the successful applications for ethics approval. Finally, the chapter addresses
the ethical issues of this inquiry and the measures taken to enhance the quality, credibility
and plausibility of its phenomenological analyses and descriptions.
Chapter Four introduces the research participants and reviews their biographical,
demographic and geographic situation. This chapter descriptively summarises each
participant's related lived experience. As used in this context, the term 'lived experience'
reflects "... the ways in which people understand themselves, other people and things,
through living their life" (Taylor 1994, p. 37). Understanding the individual's experience
and meaning of living with an ICD grounded the analysis of the collective lived experience
of patients and partners.
Chapter Five presents a phenomenological description of the nature and meaning of being
a patient within the context of living with an ICD. This description is structured around
the identified themes of being disrupted, reconstructing life, appreciating and celebrating
life, and accommodating the technology. Issues related to life, death, self, potential and
concern for others permeated these changing dimensions in the patient's experience. The
meaning of living with an ICD involved notions of bodily awareness, vulnerability, control
and choice, and perceiving the ICD. Finally, the description reveals that being a patient
meant experiencing the ICD as either a protective friend or as an inescapable intrusive
object in the body and in everyday life.
The Chapter Six description of the nature and meaning of the lived experience of being a
partner identifies similar thematic dimensions. This description reveals an experience of
embodied personal vulnerability and a perceived responsibility for the patient's well-being
and survival. Despite some initial wariness, the partner comprehends and eventually relies
on the ICD as a protective insurance policy. This chapter also discusses how living with an
ICD is a phenomenon that affects the whole family.
Using a hermeneutic approach, Chapter Seven presents an interpretive understanding of
the ways in which, as an implanted medical technology, the ICD is perceived, integrated,
embodied and comprehended. This interpretation of the ICD-as-experienced integrates
18
ideas drawn from existential and phenomenological thought, philosophical critiques of
technology and discourses about health care technology. The first of two presented
possibilities suggests the comprehension of the ICD as a valued lifesaving technology that
is perceptually integrated and embodied as a welcomed friend. The contrasting alternative
suggests an embodied perception of the ICD as an alienating technology that is
existentially rejected as an intruder in the patient's body and life.
Chapter Eight considers the relevance of this study's exploration of living with an ICD for
nurses, doctors and others who have a keen interest in this phenomenon. With reference to
the related literature, the chapter identifies several contributions. First, it suggests
hermeneutic phenomenology provides a useful perspective for exploring living with an
ICD. Second, the study presents information about the clinical context of the Victorian ICD
program and the related experiences of its patients and their partners. Third, the chapter
discusses how the presented phenomenological understanding of being a patient, being a
partner and the embodiment of the device enriches disciplinary awareness of the
experience of living with an ICD.
Chapter Nine considers the practical implications of this study and makes several
recommendations to improve staff education and the provision of educative and
supportive interventions for patients and partners. The chapter also presents a proposed
approach to implementing and evaluating each recommendation. Recommendations for
future research are also explained in detail. Chapter Ten offers some concluding reflections
about the study intentions, conduct, processes and outcomes. It also considers the potential
contribution of hermeneutic phenomenology for understanding similar phenomena.
1.4
Conclusion
The ICD is an implanted, life-saving medical device that protects patients against the risk
of sudden cardiac death in the event of a rapid ventricular arrhythmia. The exponential
expansion in its use makes it imperative that nurses, doctors and other clinicians know
about this device and understand the everyday lived experience of patients and their
partners.
19
Despite the considerable technical knowledge about the ICD and its effectiveness, much
still needs to be learned about the experience of living with an ICD. Current information
about related patient and partner experiences derives from multiple overseas studies.
These studies focus on the physical, psychological and social problems and outcomes of
patients and the psychosocial outcomes of partners. Little is known about the Australian
ICD program or the experiences of its patients and partners.
As outlined above, this study formed part of a project designed to help redress knowledge
deficits about the Australian ICD program. This study specifically addressed the need for
more information about the experience living with an ICD for local patients and partners.
The use of a hermeneutic phenomenological design offered an inquiry perspective not
previously reported in the literature.
The next chapter reviews the related nursing and medical literature. It identifies what is
currently known about living with an ICD. It identifies several concerns, issues and
knowledge deficits.
20
CHAPTER TWO
LITERATURE REVIEW
2.1
Introduction
The professional medical and nursing literature offered the only available information
about the human phenomenon of living with an ICD. The search for alternative viewpoints
or insights, such as those that might be found biographical accounts or sociological
analyses of living with this implanted technology proved fruitless, possibly because this is
a relatively new human phenomenon.
This chapter specifically draws on the body of medical and nursing literature that discloses
information about the patient's or the partner's experience living with an ICD. Mention has
already been made (Chapter 1.1) of the extensive collection of medical articles describing
the ICD's technological development, efficacy in preventing sudden cardiac death, costeffectiveness, faults and potential complications. Further discussion relates specifically to
the experience of the device.
This chapter begins by reviewing knowledge of the patient's experience of living with an
ICD. This review notes the different methodological directions underpinning this
knowledge and the influence of technological changes in the ICD on the nature of the
patient's experience. Living with an ICD is grounded in an arrhythmic susceptibility. It is
thus appropriate to begin by reviewing the experiences of arrhythmia survival and of
undergoing the related investigative procedures of electrophysiological studies (EPS) and
a coronary angiogram. In keeping with different research interests the review considers
specific aspects of living with an ICD. These aspects include general concerns and physical
effects, psychological impact, being shocked, coping strategies, sexual activity, quality of
life and the resumption of employment and driving.
There is comparatively less literature about the partner's experience of living with an ICD,
with current knowledge limited to the related psychosocial concerns. The review of this
literature is structured around issues associated with witnessing the patient's cardiac
arrest, the stress of ICD implantation and subsequent lifestyle changes.
21
This review concludes with an overview of what is known about the experience of living
with an ICD. Various knowledge deficits are identified and discussed with reference to the
current study.
2.2
Patients' experiences with the ICD
2.2.1
Methodological issues
There is a considerable body of knowledge about the ICD and its associated problems for
patients and partners. The following discussion integrates the findings of research
conducted by doctors, psychiatrists and nurses. Differences in the clinical origins and
interest of the researcher(s), the research methodologies and designs and in the data
collecting instruments made this integration difficult.
The medical literature includes clinical case reports and large multi-centre quantitative
studies of patient mortality and morbidity rates and more specifically issues related to ICD
efficacy. Evidence of patients' and partners' psychological problems comes from the
clinical reports and descriptive studies of psychiatrists, as well as research that includes
standardised psychiatric tests. Nursing evidence of patient and partner concerns,
information and support needs, or coping typically includes clinical reports or small
descriptive studies. There is, however, also considerable interdisciplinary overlap, with
most articles mentioning issues about physical outcomes, psychosocial concerns, devicerelated complications or being shocked. Few articles specify the type of ICD in use, or the
mode of ICD implantation. Changes in both the technology and the insertion processes are
likely to alter the patient's initial if not later experiences. Missing information about these
issues makes it more difficult to interpret differences in research findings.
2.2.2
The impact of changing technology on patients' experiences
The literature includes extensive details about changes in ICD design and size, insertion
techniques and therapeutic options (e.g., Brachman et al. 1994; Estes et al. 1994; Manolis
22
1994; Mirowski et al. 1980; Mower & Hauser 1993; Nathan 1994; Pinski & Trohman 1995;
Trappe 1996). These changes, summarised in Figure 2.1, impact on patient experiences in
the perioperative and recovery periods.
Figure 2.1:
Changes in the ICD size, weight and site
Dimension
Weight
Pre-1990s ICD models
Mid-1990s ICD models
11.2 x 7.1 x 2.5 cm
7 x 5.5 x 1.75 cm
(4.5 x 3 x 1 inches)
(2.7 x 2 x 0.75 inches)
250 - 290 grams
90 - 120 grams
Insertion site
-
generator
Abdominal pocket
Pectoral pocket
-
ICD leads
Via a thoracotomy
Transvenous approach
(leads with, without epicardial
patches)
(single or double lead)
Abdominal incision
Pectoral incision
Wounds
Sternotomy or thoracotomy incision
(small)
Until recently, insertion of an ICD required a sternotomy wound (incision of the
breastbone) or a thoracotomy wound (lateral chest wall incision) for doctors to affix
epicardial defibrillating patches to the heart's surface. The lead from these patches,
together with the sensing electrode were then tunnelled under the diaphragm to allow
connection to the abdominally positioned generator (Manolis 1994; Schleicher 1994). The
introduction of a transvenous approach for lead insertion as well as smaller generators
abolished the need for major chest surgery and allowed implantation of the generator
within a pectoral muscular pocket (Kolettis & Saksena 1994; Tresch et al. 1991; Yee, Sharma
& Klein 1990). All patients who receive an ICD require close post-operative monitoring of
their cardiac status. Use of the small pectoral device, however, reduces post-operative
pain, complications, time in hospital and long term discomforts (de Lissovoy & Guarnieri
1993; Estes et al. 1994; Fitzpatrick et al. 1994; Herre et al. 1995; Jones et al. 1995; Lehman,
Steinman & Meissner 1994; Manolis 1994; Strickberger et al. 1994; Sweeney & Rushkin
1994; Trappe 1996).
23
The ICD is designed to quickly detect and revert a life-threatening arrhythmia so that it
has minimal impact on reducing cardiac output. The original device delivered a fixed
therapy of four defibrillating shocks when it detected an arrhythmia (Mirowski et al. 1970;
Mirowski et al. 1980). Most models in use since the early 1990s now include a range of
sequential therapies. These therapies include antitachycardic pacing, cardioverting shocks
and defibrillating shocks (Estes et al. 1994; Ideker, Hillsley & Wharton 1992; Nathan 1994;
Pinski & Trohman 1995; Trappe 1996; Yee, Sharma & Klein 1990). Antitachycardic or
overdrive pacing (ATP) successfully reverts 79% to 93% of detected ventricular tachycardia
episodes, often with the patient unaware of its intervention (Estes et al. 1994). Most data
suggest the ATP facility reduces the number and discomfort of delivered shocks and
increases the longevity of the generator battery (B?cker et al. 1994; Burke 1996; Estes et al.
1994; Nunain et al. 1995; Trappe 1996). One comparative study (Kovoor et al. 1995),
however, found no difference in the incidence of shocks between patients whose ICD had
the ATP facility and those who either had this turned off or had a shock-only ICD.
The ICD offers two forms of shocks. If the ATP fails to revert a detected arrhythmia the
ICD is preprogrammed to deliver one or more cardioverting or low voltage shocks. Shocks
of 0.5 joules reportedly produce minimal discomfort, but when greater than 3.0 joules
cause a discomfort similar to that felt with maximum strength defibrillating shocks (of 25
to 30 joules or 700 volts) (Estes et al. 1994). Defibrillating shocks are designed to reverse
ventricular fibrillation, a chaotic quivering of the myocardium that results in a fatal cardiac
arrest if not corrected within four minutes (Estes et al. 1994; Yee, Sharma & Klein 1990).
Most devices also include antibradycardic pacing to treat a post-shock heart beat that is
abnormally slow. The ICD also has a memory facility that stores retrievable data on
detected arrhythmias and delivered therapies.
2.2.3
Pre-ICD assessment
Criteria for ICD implantation have changed considerably since the early 1980s. Originally,
patients had to survive at least two arrhythmic cardiac arrests before receiving an ICD
(Mower et al. 1980). By the 1990s use of the ICD extended to include patients whose
ventricular arrhythmia susceptibility could not otherwise be treated (Breithardt et al. 1994;
Mower & Hauser 1993). Even without ICD implantation, recovery from such arrhythmic
events often takes up to six months (DeBasio & Rodenhausen 1984; Dobson et al. 1971;
24
Dougherty 1994; Dunnington et al. 1988; Finkelmeier, Kenwood, & Summers 1984; Kolar &
Dracup 1990; Owen & Harrison 1985; Sauv? 1995).
Potential candidates for an ICD also endure numerous blood tests, a coronary angiogram
and at least one EPS. Each procedure increases the patient's level of anxiety, emotional
stress and discomfort (Beckerman, Grossman & Marquez 1995; Finesilver 1978; Menza,
Stern & Cassem 1988; Peterson 1991; Tyndall 1983). Until the mid-1990s, doctors often
prescribed different antiarrhythmic medications to chemically suppress the patient's
myocardial irritability. Such practices were reduced with the discovery that prolonged use
may actually induce arrhythmias (Estes et al. 1994; Myerburg et al. 1994; Sweeney &
Rushkin 1994).
The offer of an ICD may ease patient anxiety, but the pre-insertion period remains a
vulnerable time. Patients often report a heightened vigilance of their body's responses,
fatigue, sleep disturbances, powerlessness and emotional distress (Beckerman, Grossman
& Marquez 1995; DeBasio & Rodenhausen 1984; Dougherty 1994; Fricchione, Olson & Vlay
1989; Fricchione, Vlay & Vlay 1994; Pycha et al. 1986; Teplitz, Egenes & Brask 1990; VesethRogers 1990). Friends, however, may not comprehend the seriousness of the patient's
diagnosis, distress or proposed treatment (Burke 1996; Owen & Harrison 1985; VesethRogers 1990).
2.2.4
Learning about the ICD
Patients require extensive education, counselling and emotional support in the pre- and
post- ICD implantation periods (Brannon & Johnson 1992; Dunbar, Warner & Purcell 1993;
Fricchione, Olson & Vlay 1989; Fricchione, Vlay & Vlay 1994; Veseth-Rogers 1990). They
require a range of new information about the ICD's functions, and shocks and need for
regular device checks. They also require advice about the impact of the ICD on exercise,
driving and work and how to protect its functions (Dunbar, Warner & Purcell 1993; Moser,
Crawford & Thomas 1993; Schaefer, Chicca & Fisher 1992). Proximity to electromagnetic
and high voltage energy sources may deactivate or switch off the ICD's functions or result
in inappropriate shocks. Hence, patients need to avoid diathermy equipment, airport
screening devices, electricity sub-stations, powerful vibrating tools, welders and operating
truck engines. Innocuous items such as powerful stereo speakers, magnetic bingo wands
25
and hand-held remote controls have also been shown to affect the ICD's functioning
(Embil et al. 1993; Ferrick et al. 1991; Karsen, Grace & Denes 1989; Man et al. 1993; Moser,
Crawford & Thomas 1993; Schaefer, Chicca & Fisher 1992).
Patients may have trouble remembering the complex information about living with an
ICD. Known impediments to comprehension include emotional distress and postarrhythmic cognitive deficits (Dougherty 1994, 1997; Fricchione, Vlay & Vlay 1994; Kuiper
& Nyamathi 1991; Sauv? 1995; Sneed & Finch 1992). Professionally organised support
meetings in the early post-insertion period are recommended to reinforce this body of
information and help resolve patient concerns (Badger & Morris 1989; Burke 1996;
Doolittle & Sauv? 1995; Fricchione, Vlay & Vlay 1994; Molchany & Peterson 1994; Teplitz,
Egenes & Brask 1990).
2.2.5
Living with the ICD
The following overview of patient experiences with the ICD reflects typical issues
addressed in the literature. These issues include patient concerns and physical problems,
psychological adjustment, receipt of ICD shocks, coping strategies, sexual activity, quality
of life and resuming employment and driving. Occasionally divergent findings reflect
differences in research questions and methods as well as changes in the ICD's technology
and related clinical practices.
The literature reviewed in the following discussion provides extensive data about patient
demographics, ICD-related problems and measurable outcomes. In contrast, data about
the type and location of the ICD, duration since ICD implantation and the number, type
and impact of device-related events remain limited. The following review includes
findings from Dunbar's (1993) recent longitudinal study that addressed many of these
issues. Her study used multiple research instruments to explore the experiences of 200
American patient-family member dyads. Patient experiences were studied using the
variables of
pre- and post-ICD functional and cognitive status, coping behaviours,
concerns, mood disturbances, ICD shock sensations and views about ICD implantation.
Data were also obtained about partner experiences. The findings have since been
extensively reported (Davis et al. 1995; Davis et al. 1996; Dunbar et al. 1995; Dunbar,
26
Porter, Jenkins, Hawthorne, Davis, & Dudley 1996; Dunbar, Porter, Jenkins, Hawthorne,
Davis, & Dudley 1996; Hawthorne et al. 1995; Jenkins et al. 1995).
2.2.5.1 General concerns and physical effects
Patients who received the larger abdominal ICD generator reported considerable wound
pain, disrupted sleep patterns, anxiety and ongoing localised discomfort (Cooper et al.
1986; Dubin et al. 1995; Fricchione, Vlay & Vlay 1994; LŸderitz et al. 1994; Pycha et al. 1990;
Sneed & Finch 1992; Vitale & Funk 1995). Regardless of predischarge education, or the
type of ICD, patients worry about the reliability of the ICD and the impact of its shocks
(Cooper et al. 1986; Dunbar, Warner & Purcell 1993; Molchany & Peterson 1994; Sneed &
Finch 1992). Patients report frustrations associated with reduced energy and exercise
levels, overprotective family members and the imposition of lifestyle changes (Bainger &
Fernsler 1995; Kalbfleisch et al. 1989; Kuiper & Nyamathi 1991; LŸderitz et al. 1994; Pycha
et al. 1990; Schuster et al. 1998; Sneed & Finch 1992; Vitale & Funk 1995). Younger adult
patients also express concern about financial difficulties and reduced sexual activities
(Dubin et al. 1995; Kuiper & Nyamathi 1991; Vitale & Funk 1995).
2.2.5.2 Psychological adjustment to the ICD
There is conflicting evidence about the psychological impact of ICD implantation.
Contrary to Pinski and Trohman's (1995, p. 775) claim, there is considerable information
about this aspect of living with an ICD. The first source of information comes from clinical
cardiologists (e.g., Fricchione, Olson & Vlay 1989; Fricchione, Vlay & Vlay 1994; Kerin,
Aarons & Veltri 1991; Morris et al. 1991; Pycha et al. 1986). The second source comes from
findings in quality of life studies that include a psychological component (e.g., Badger &
Morris 1989; Cooper et al. 1986; Dougherty 1994; Kalbfleisch et al. 1989; Kuiper &
Nyamathi 1991; LŸderitz et al. 1994; Sneed & Finch 1992; Teplitz Egenes & Brask 1990).
Collectively, this evidence suggests patients are at risk of several adverse psychological
effects for at least six to twelve months after ICD implantation. The few studies that
include longer term patients (e.g., Craney et al. 1997; Pycha et al. 1990; Sneed & Finch 1992)
do not examine the incidence or severity of psychological problems.
27
Psychological problems noted to occur within the first six months include fears, acute
anxiety, denial and anger, reactive depression, helplessness and mood and sleep
disturbances (Dougherty 1994, 1995; Dunbar et al. 1995; Dunbar et al. 1996; Fricchione,
Vlay & Vlay 1994; Morris et al. 1991; Pycha et al. 1986; Sneed & Finch 1992). Fears relate to
the risk of device malfunction, premature death and unpredictability of ICD shocks
(Bainger & Fernsler 1995; Cooper et al. 1986; Doolittle & Sauv? 1995; Dunbar, Warner &
Purcell 1993; LŸderitz et al. 1994; Sneed, Finch & Leman 1994; Vitale & Funk 1995). There
is a positive correlation between high levels of anxiety and sleep disturbances, physical
symptoms, perceived loss of control, impaired concentration, depression and a sense of
being overprotected (Dougherty 1994, 1995; Schuster et al. 1998). Some patients develop
transitory but severe depression and panic and adjustment disorders (Morris et al. 1991).
There is extensive information about the factors associated with an increased incidence of
psychological problems after ICD insertion (Dougherty 1994; Fricchione, Vlay & Vlay 1994;
Kuiper & Nyamathi 1991; LŸderitz et al. 1994; May et al. 1995; Morris et al. 1991; Pycha et
al. 1986; Sneed & Finch 1992; Sneed, Finch & Leman 1994; Teplitz, Egenes & Brask 1990).
Identified factors include being shocked within weeks of ICD insertion, device
malfunction, deteriorating physical health, unemployment, poor social support and
another family member with a psychiatric illness. The ICD's negative impact on body
image, sexuality, daily activities and employment increases the risk of psychological
problems in patients under 50 years (Dubin et al. 1995; Vitale & Funk 1995). There is,
however, some support for the view (May et al. 1995) that psychological problems may be
more related to experiencing a life-threatening arrhythmia than ICD insertion. Two small
studies compared patient outcomes with either ICD implantation or only antiarrhythmic
medication. Findings suggested that ICD implantation did not affect the patient's preexisting levels of anxiety, psychological distress, quality of life or health status (Arteaga &
Windle 1995; Keren, Aaron & Veltri 1991). As discussed below, conflicting evidence
attributes various psychological problems to the ICD's presence or functions.
2.2.5.3 Being shocked
The ICD's function includes the delivery of one or more shocks to correct a life-threatening
arrhythmia. The experience of being shocked has been extensively described and studied
(e.g., Cooper et al. 1986; Dunbar, Warner & Purcell 1993; Fricchione, Vlay & Vlay 1994;
28
Kuiper & Nyamathi 1991; LŸderitz et al. 1994; Molchany & Peterson 1994; Pycha et al.
1986; Pycha et al. 1990; Sneed & Finch 1992). This body of literature reveals how patients
express apprehension about the possible timing, precipitating activities, nature, impact
and effectiveness of any shocks. This literature also notes that the psychological effects of
being shocked depend on the timing of the first shock, the patient's conscious state, and the
intensity and number of shocks received. Being shocked within the first few months, as
happens for one third of patients, significantly increases anxiety, depression, anger and
stress levels (Bremner, McCauley & Axtell 1993; Dougherty 1995; McKinley et al. 1997;
Morris et al. 1991). Later shocks, in contrast, produce few psychological effects and do not
detract from the patient's quality of life (Bainger & Fernsler 1995; Keren, Aaron & Veltri
1991).
The number of received shocks affects the patient's subsequent experience. Significant
increases in anxiety are reported by patients who receive five or more shocks while
conscious during the first year (Keren, Aaron and Veltri 1991; LŸderitz et al. 1994). Other
detrimental effects include loss of confidence, fears of future shocks, renewed body
vigilance, depression, sleep disturbances, avoidance of everyday activities and reduced
libido (Dunbar, Warner & Purcell 1993; Fricchione, Vlay & Vlay 1994; LŸderitz et al. 1994).
Some patients suffer related panic attacks, vivid flashbacks, nightmares and nocturnal
phantom or imaginary shocks. Psychiatric intervention and anxiolytic or antidepressive
medications may help these patients (Fricchione, Vlay & Vlay 1994; Kowey, Marinchek &
Rials 1992; Pycha et al. 1986; Pycha et al. 1990). More knowledge is needed about the
impact of being shocked on later patient outcomes (Bremner, McCauley & Axtell 1993).
Being shocked is often a physically uncomfortable experience that occurs with little or no
warning (Cooper et al. 1986; Dunbar, Warner & Purcell 1993; Kuiper & Nyamathi 1991).
Descriptive studies indicate that 25% to 47% of patients report discomfort, 17% to 25%
report severe pain, and 14% experience such distress that they become terrified of future
shocks (Dougherty 1995; LŸderitz et al. 1994; Pycha et al. 1990; Sneed & Finch 1992).
Similar findings come from three studies that asked patients to rate their shock experience
on a visual analogue scale. Whereas most American patients rated their shock as
moderately painful (Bainger & Fernsler 1995; Dunbar, Warner & Purcell 1993), most
Australian patients indicated slightly lower levels of pain or discomfort (McKinley et al.
1997). This minor difference might reflect cultural differences in the interpretation of the
words 'pain' or 'discomfort' used in these scales. The Australian patients were more likely
to have a newer model of the ICD with antitachycardic pacing and the lower joule
29
cardioverting shocks. This newer model reduces the level of discomfort associated with
being shocked (Estes et al. 1994).
Knowledge about the impact of inappropriate or multiple shocks is limited. Between 7% to
39% of all shocks are inappropriate, or when there is no life-threatening arrhythmia, with a
faulty sensing mechanism the main cause (Daoud et al. 1994; Kou et al. 1991; Tresch et al.
1991; Villacast’n et al. 1996). Inappropriate shocks create unnecessary psychological and
physical distress. Such shocks also predispose the patient to further arrhythmias and
shocks, impaired cardiac function and possible death (Daoud et al. 1994; Ideker, Hillsley &
Wharton 1992; Jones, G.K. & Bardy 1994; Man et al. 1993; Nunain et al. 1995; Pinski &
Trohman 1995; Tresch et al. 1991; Villacast’n et al. 1996).
Between 3% to 20% of patients experience multiple shocks, or more than two shocks within
a few minutes (Villacast’n et al. 1996). Multiple shocks are often due to a sustained
ventricular tachycardia and more likely if the patient has severe cardiac failure (Pinski &
Trohman 1995; Villacast’n et al. 1996). The limited evidence suggests patients are often
unaware they might receive more than one shock, or that successive shocks might be
stronger or more painful. Fears about the ICD's failure to correct the arrhythmia exacerbate
a sense of helplessness (Dunbar, Warner & Purcell 1993).
The current mode of reporting data about ICD shocks may convey misleading
impressions. Some authors simply note the mean number of shocks received by each
patient. Dougherty (1994, 1995), for example, reported a mean total of 26 shocks per
patient, without adding that five of the 15 patients each received between 3 and 100
shocks. Further ambiguity occurs in noting the total number of shocks received per patient.
Examples of 4 shocks or 10.6 shocks per patient (Bainger & Fernsler 1995; Keren, Aaron &
Veltri 1991) are meaningless without data about the timing or sequence of the shocks. The
shocks could have occurred successively on one occasion, or individually over a period of
time, and on each occasion thus experienced quite differently.
30
2.2.5.4 Coping strategies
The first six months after ICD implantation is a time when patients adopt various
strategies to regain their confidence, resume physical activities and overcome their sense of
isolation (Burke, Rodgers & Jenkins 1992; Craney et al. 1997; Kuiper & Nyamathi 1991;
LŸderitz et al. 1994; Sneed & Finch 1992). Strategies associated with improved physical
recovery and independence include confronting an issue, validating ICD-related
experiences with others, social support and diversional techniques that reduce stress
(Burke, Rodgers & Jenkins 1992; Craney et al. 1997; Kuiper & Nyamathi 1991). Optimism,
positive thinking and denial prove useful strategies for coping with various psychosocial
concerns (Craney et al. 1997; Dougherty 1994; Kuiper & Nyamathi 1991), but even with the
smaller ICD, it takes patients at least three months to regain a sense of control (McKinley et
al. 1997). A sense of control is closely aligned to the concept of self-efficacy, that is,
expecting to be able to manage various activities (Schuster et al. 1998). Diminished selfefficacy is associated with ongoing physical symptoms, fears about ICD malfunction, poor
cardiac function, driving restrictions and difficulties with everyday activities (Schuster et
al. 1998). The concepts of control and self-efficacy have been recommended as frameworks
for nursing interventions to facilitate recovery after ICD implantation (Davis et al. 1996;
Schuster et al. 1998).
2.2.5.5 Changes in sexual activity
In contrast to other aspects of living with an ICD, knowledge about its impact on sexual
activity remains limited and specific to the experiences of male patients. Whereas survival
of life-threatening arrhythmias increases intimacy and closeness (Pycha et al. 1986; Simons,
Cunningham & Catanzaro 1992), the evidence suggests that ICD implantation diminishes
the quality of marital relationships. Many patients are afraid that intercourse might induce
arrhythmias and possible shocks (Brodsky et al. 1988; Cooper et al. 1986; Pycha et al. 1986;
Sauv? 1995; Teplitz, Egenes & Brask 1990). Physiological changes and medication side
effects might also contribute to situations in which approximately 50% of patients between
20 and 50 years of age report reduced libido and sexual intimacy (Brodsky et al. 1988;
Cooper et al. 1986; Dubin et al. 1995). The literature offers little advice about sexual
counselling or the strategies patients could use to resolve these fears.
31
2.2.5.6 Quality of life
Several studies of the patient's quality of life focus on the initial six months after ICD
implantation (Bainger & Fernsler 1995; Cooper, Valladares & Futterman 1987; Dougherty
1995; Kalbfleisch et al. 1989; Kolettis & Saksena 1994; Pycha et. al. 1986, 1990; Sneed &
Finch 1992; Teplitz, Egenes & Brask 1990). Factors that negatively affect quality of life
include early ICD shocks, other health problems, driving restrictions, unemployment,
reversal of family roles, financial hardships and interrupted future plans. Negative factors
for younger adults include concerns about sexuality, body image, altered relationships and
disrupted life priorities (Arteaga & Windle 1995; Dubin et al. 1995; Tchou et al. 1993).
Despite initial diminution of their quality of life, most patients without concomitant
illnesses or device related problems eventually regain their pre-implant quality of life. This
takes approximately 12 months for patients with an abdominal generator (Doolittle &
Sauv? 1995; Dougherty 1995; May et al. 1995) and around three months for those with a
pectoral device (McKinley et al. 1997). Most patients eventually value the ICD as a source
of security and recommend it to others in similar situations (Badger & Morris 1989; Cooper
et al. 1986; Davis et al. 1996; Fricchione, Vlay & Vlay 1994; LŸderitz et al. 1994; McKinley et
al. 1997; Pycha et al. 1990; Reid, McKinley & Nagy 1999).
Early quality of life assessments related to living with an ICD involved a range of
quantitative measures and comparative analyses of the findings proved difficult. More
recent studies recognise a need to use standard instruments for assessing quality of life
with an ICD (Gallagher et al. 1997; Greene 1994; LŸderitz et al. 1994; Saksena 1994).
Examples include the New England Medical Center Health Questionnaire (Dubin et al. 1995),
the Ferrans and Powers Quality of Life Index (Cardiac version) (Bainger & Fernsler 1995) and
the Sickness Impact Profile (SIPS) (May et al. 1995).
Kinney (1995) reviewed numerous assessment instruments used to evaluate quality of life
in patients recovering from a cardiac problem. In addition to distinguishing between
synonymous terms used in these instruments, she recognised the need to "... clarify the
distinction between what is QOL and what contributes to QOL" (Kinney 1995, p. 93).
Qualitative descriptions of the patient's and partner's understanding of their experience
were suggested as the means of obtaining insights into the personal, emotional, social and
cultural context influencing perceived quality of life (Kinney 1995).
32
2.2.5.7 Resumption of employment
There is considerable evidence about the resumption of work by patients who have
experienced life-threatening arrhythmias or have an ICD (Bainger & Fernsler 1995;
Dougherty 1995; Dunnington et al. 1988; Kalbfleisch et al. 1989; McKinley et al. 1997; Pycha
et. al. 1986, 1990). This evidence notes that patients who are unable to resume work
experience a sense of worthlessness and depression. Those who return to work report
improvements in quality of life, well-being, health and physical abilities. These personal
benefits, together with the economic and social value of patient re-employment, supports
the use this expensive technology (Kalbfleisch et al. 1989).
Factors associated with re-employment among patients with an ICD implantation include
confidence in the device, general health status, ability to drive, being married, a higher
level of education and a suitable job (Anderson & Camm 1994; Kalbfleisch et al. 1989).
Work should not involve the patient in physically strenuous activities or being near
electromagnetic forces that might impede the ICD's functions. Most patients in England
(55%), America (60-80%) and Australia (77%) resume work, with young Americans having
the highest rate (80%) (Anderson & Camm 1994; Bainger & Fernsler 1995; Dougherty 1995;
Dubin et al. 1995; Kalbfleisch et al. 1989; Reid, McKinley & Nagy 1999; Vlay 1986). These
re-employment rates are similar to those among patients recovering from other acute
cardiac events (Fricchione, Vlay & Vlay 1994; Kalbfleisch et al. 1989; Sauv? 1995).
2.2.5.8 Driving
Whether patients with an ICD should drive a vehicle is the topic of much international
debate. This debate focuses on the patient's perceived right or need to drive and medical,
legal, social and ethical concerns about public safety (Anderson & Camm 1994; Finch et al.
1997; Jung & LŸderitz 1996a, 1996b, 1996c; Petch 1996; Trappe, Sch?hl & Wenzlaff 1995).
Medical concerns reflect the unpredictable nature of arrhythmias and their impact on the
patient's safe control of a vehicle. Laboratory evidence suggests that patients experience
impaired cerebral perfusion, reduced alertness and slower physical reactions within 30
seconds of an artificially induced arrhythmia (Anderson & Camm 1994; Singer & Edmonds
1994).
33
Medically imposed driving restrictions, however, vary between different countries. In
England, patients cannot drive for at least 12 months after ICD implantation. They also
face a year long ban after being shocked (Anderson & Camm 1994; Finch et al. 1993; Jung
& LŸderitz 1996b; Petch 1996). In contrast, in the absence of national guidelines, individual
cardiologists in the USA and Germany decide the duration of imposed restrictions. Typical
recommendations range from a permanent driving ban, to a wait of one to twelve months
(DiCarlo et al. 1992; Jung & LŸderitz 1996b; Keelan et al. 1995; Larsen et al. 1994;
Strickberger, Cantillon & Friedman 1991). The call for more uniform and less restrictive
policies (Jung & LŸderitz 1996a) recognises that patients vary in their response to
ventricular arrhythmias. It also acknowledges their actual driving behaviours after ICD
implantation.
Most patients see driving as a social right. They resent the negative impact of driving
restrictions on their independence, employment, quality of life and social activity
(Beauregard et al. 1995; Craney & Powers 1995; Finch et al. 1993). Most patients defy their
cardiologist's advice and resume driving. Related evidence indicates a low incidence of
related traffic accidents (Beauregard et al. 1995; Craney & Powers 1995; Finch et al. 1993;
Jung & LŸderitz 1996c; Keelan et al. 1995; Kou et al. 1991; Larsen et al. 1994; Trappe,
Sch?hl, & Wenzlaff 1995; Zilo, Luceri & Vardeman 1994).
2.2.5.9 Female patients' experiences
Questions have been raised about a possible gender bias favouring males regarding the
provision of cardiac treatments, including the ICD (Beery 1995). Males are twice as likely
to suffer a ventricular tachyarrhythmia (Gillum 1989), but receive 73% to 89% of implanted
ICDs (Nisam, Mower & Moser cited in Beery 1995; Villacast’n et al. 1996). In Australia, the
current rate of ICD implantation is 2.4 per 100,000 males, but 0.8 per 100,000 females
(Senes-Ferrari 1999). One study (Horton et al. 1995), however, refuted a suggested gender
bias in the use of the ICD. A chart review of 130 patients (39 females, mean age 66 years; 91
males, mean age 64 years) revealed that female patients not offered an ICD were usually
older, with concomitant medical problems. More female patients also refused an ICD, with
widowed status and poor social support suggested as reasons (Horton et al. 1995).
34
Concerns were expressed in the 1980s regarding the limited information about the
incidence and experience of sudden cardiac death in females (Dimsdale et al. 1987). There
is conflicting evidence about the mortality risks faced by female patients (e.g., Horton et al.
1995; Villacast’n et al. 1996). Knowledge of female patients' experiences of living with an
ICD is limited (e.g., Beauregard et al. 1995; Dunbar, Porter, Jenkins, Hawthorne, Dudley &
Davis 1996; Horton et al. 1995; Molchany & Peterson 1994). It suggests that compared to
male patients, female are usually older, widowed, have a slower functional recovery after
ICD implantation and poor social support. This knowledge also suggests female patients
express less concerns about subsequent lifestyle changes and driving restrictions. Contrasts
occur, however, with the even more limited knowledge about younger adult females. The
available evidence suggests a good recovery that includes giving birth without problems
(Dubin et al. 1995). There is a clear need for more information about the experience of
living with an ICD for females in all age groups.
2.3
Partners' experiences
Although limited, the available information suggests that living with an ICD has a
profound impact on the lives of partners (e.g., Badger & Morris 1989; Dougherty 1994;
Dunbar, Warner & Purcell 1993; Dunbar et al. 1995; Pycha et al. 1990; Simons,
Cunningham & Catanzaro 1992; Teplitz, Egenes & Brask 1990). Although little is known
about male partners, this information suggests female partners often report less access to
social support, increased responsibilities and an increased likelihood of mood
disturbances. Concerns about witnessing a patient's collapse, the near loss of the patient
and the need for specific information are common. Similar concerns are, however, also
often reported by partners of patients recovering from a cardiac arrhythmia, heart failure,
myocardial infarction or cardiac surgery (Caplin & Sexton 1988; Dobson et al. 1971;
Karmilovich 1994; Orzeck & Staniloff 1987; Rankin 1992). In addition, partners of patients
with an ICD report additional stresses related to the impact of ICD implantation for the
patient and other family members.
2.3.1
Witnessing the patient's cardiac arrest
35
Many partners witness the patient's pre-ICD arrhythmic collapse, with some also
participating in the patient's resuscitation (Doolittle & Sauv? 1995; Dougherty 1994;
Simons, Cunningham & Catanzaro 1992). Doolittle and Sauv?'s (1995) phenomenological
study explored the experience of surviving a cardiac arrest for 40 patients and their
partners. Twenty-one partners witnessed the arrest. As with Dougherty's finding (1994),
Doolittle and Sauv? (1995) revealed how partners suffer considerable emotional distress.
Partners who witnessed the arrest noted that vivid memories framed their future concerns,
actions and decision-making (Doolittle & Sauv? 1995), whereas those who did not witness
the arrest based their assessments and actions on the patient's present health status. Most
(28) patients received an ICD, but its impact for partners is not explored.
Simons, Cunningham & Catanzaro (1992) interviewed nine female partners of patients
who survived a cardiac arrest and, except for one, received an ICD prior to their hospital
discharge. Interviews occurred up to 10 months after the patient's discharge. These
partners noted that, regardless of the ICD's presence, the first month involved a time of
fear, uncertainty and intense vigilance of the patient's activities. In keeping with other
partners (Dunbar, Warner & Purcell 1993), they reported an intense sense of responsibility
for the patient's physical well-being.
2.3.2
The impact of stresses surrounding ICD implantation
As with patients, partners experience the pre- and immediate post-implantation period as
a time of considerable anxiety, fear, depression, anger, stress tension, depression and loss
of vigour (Dougherty 1994, 1995). Two studies (Beames et al. 1996; Dougherty 1995)
contrast the experience for partners of the patient receiving only antiarrhythmic
medication with the experience when the patient receives an ICD. Partners of patients
receiving an ICD reported more psychological problems, including a level of anxiety close
to being that of a diagnosable psychiatric disorder (Beames et al. 1996; Dougherty 1995).
Factors known to increase partner anxiety include concerns about the ICD's reliability and
efficacy, as well as the stress and helplessness of witnessing the patient being shocked
(Dougherty 1995; Dunbar, Warner & Purcell 1993; Pycha et al. 1990; Simons, Cunningham
& Catanzaro 1992). Many of the 53% of partners who fear the ICD worry express fears
about feeling its shock (Brodsky et al. 1988; Teplitz, Egenes & Brask 1990). Most often,
36
persons touching the patient at the time of a shock will feel only a tingling sensation. At
worst, a maximum joule shock will produce a skin surface sensation likened to the minor
shock felt from a faulty electrical appliance (Peters et al. 1996).
2.3.3
Lifestyle changes
Several authors describe the ways in which the patient's receipt of an ICD affects the
partner's lifestyle (e.g., Badger & Morris 1989; Doolittle & Sauv? 1995; Dunbar, Warner &
Purcell 1993; Pycha et al. 1990; Simons, Cunningham & Catanzaro 1992; Sneed & Finch
1992). This body of literature suggests partners invest substantial time, energy and concern
in protecting the patient before and after ICD implantation. They seek related information,
learn first aid skills, discreetly observe the patient's activities and also try to shelter them
from various household worries and tensions.
Despite an early clinical report that suggested that the patient's receipt of an ICD was
associated with improved communication and closeness within the family (Pycha et al.
1986), subsequent evidence indicates the toll incurred by the partner, possibly because they
are often the patient's main confidante and source of support (Burke & Jenkins 1992). A
sense of loneliness is thought to result from the way in which partners hide their reactions,
frustrations and anger from the patient (Simons, Cunningham & Catanzaro 1992; Teplitz,
Egenes and Brask, 1990). Driving restrictions imposed on the patient incur an additional
burden. Besides the extra effort involved in being the primary driver, many partners note
that it is often accompanied by the patient's misplaced frustrations and criticisms (Doolittle
& Sauv? 1995; Simons, Cunningham & Catanzaro 1992). Partners also often experience
anxiety about resuming sexual activities and, compared to the patient, are more likely to
report adverse changes in the marital relationship (Dougherty 1994; Teplitz, Egenes and
Brask 1990).
A sense of helplessness about enforced lifestyle changes is common (Simons, Cunningham
& Catanzaro 1992; Teplitz, Egenes and Brask 1990). Despite having few opportunities to
validate their experiences with other partners, partners are also often reluctant to seek
additional social support from family or friends (Dougherty 1995; Kuiper & Nyamathi
1991). Nevertheless, partner experiences of anxiety, depression, anger and stress usually
abate by the end of the first year after ICD implantation. Although more knowledge is
37
needed, suggested factors influencing these changes include the passing of time,
acknowledgment of the security afforded by the ICD and the restoration of a sense of
routine (Dougherty 1994, 1995; Pycha et al. 1990; Simons, Cunningham & Catanzaro 1992).
2.4
Summative discussion
The ICD is part of a rapidly expanding and complex medical technology. This review of
the related literature explored what is currently known about the experience of living with
an ICD for patients and for partners. Broadly, the literature reflects the use of diverse
questions and concerns, by researchers with a disciplinary interest in medicine, psychiatry
and nursing and, even in similarly focused studies, the use of different methodologies and
research methods.
The following comments reflect on what this review reveals about living with an ICD.
First, it considers the medical literature promotion of the ICD's technological power to defy
sudden cardiac death. Without detracting from this benefit, there is, however, a substantial
body of evidence from cardiologists, psychiatrists and nurses of the many problems
associated with ICD for patients and their partners. This section discusses the tensions
inherent in the collective literature, identifies gaps in the current knowledge and explains
how this review informs the proposed research.
2.4.1
Promotion of the ICD as a lifesaving technology
In summary, the ICD is an implanted technology developed two decades ago to reduce the
risk of sudden death in patients who survived at least arrhythmic cardiac arrest (Mirowski et
al. 1980). This review noted how the ICD's experimental qualities, limited availability and
expense, restricted its use during the 1980s. The 1990s, however, brought an exponential
increase in ICD implantation rates, despite the continued high initial device costs. Several
factors were identified as contributing to this increase, not the least being the extensive body
of empirical evidence about the ICD's efficacy, reliability and comparative cost-effectiveness
in reducing the incidence of sudden cardiac death (Chapter 1.1.3; 1.1.4).
38
Improvements in device size, design, therapeutic functions and modes of implantation
further promoted the use of the ICD. Pinski and Trohman (1995) offer a rare critique within
the medical literature about these technological advances with ICDs. They suggest that
new models of the ICD means are increasingly complex, with costly therapeutic modalities
that may not be required by each patient. Pinski and Trohman also note how the use of
newer models of the ICD incurs additional costs because it makes redundant the device
programmers and software used in the routine checks of earlier forms of the ICD.
The medical literature in general heavily promotes the ICD as a wonderful new technology
for reducing mortality from sudden cardiac death. There is less promotion of the also
substantial body of medical evidence about patient morbidity, most often defined in terms
of physical complications or device induced problems (Chapter 1.2.3).. This body of
literature presents details about the associated physical signs, diagnostic investigations
and treatment. In keeping with the discipline's focus on objective physical data, there is
little mention about the patient's lived experience or perception of such complications.
Implicit within this literature, and evident in clinical practice, is the situation in which
doctors leave to others the tasks of ensuring patients and partners receive sufficient
information and of addressing their emotional, physical, psychosocial and spiritual
concerns (Ocampo 2000). Expressions of disappointment with regard to the dearth of
readily available professional education and support by Victorian patients with an ICD
(Reid, McKinley & Nagy 1999), suggest that, at least in this State, other clinicians have not
yet taken on these tasks.
2.4.2
Living with an ICD: Problems for Patients and Partners
There is an alternative body of literature, primarily from psychiatrists and nurse
researchers, that describes living with an ICD as a complex chronic illness experience.
Current knowledge predominantly reflects the situations of male patients during the first
year after device implantation, with emphasis given to patients' physical discomforts,
psychosocial stresses, information and support needs, quality of life changes and
difficulties in adjusting to the device (Chapter 1.2.4). This body of literature identifies how
living with an ICD presents patients and their partners with many physical and
psychosocial problems. It, however, fails to explain how patients, most of whom
39
recommend the ICD to others in a similar situation, resolve the tension of being dependent
for survival on a device
that is associated with numerous problems that reportedly
negatively impact on everyday existence. In part, this failure reflects the fact that there is
little information about longer term experiences, even though most patients live with an
ICD for five or more years (Reid, McKinley & Nagy 1999). There is also a dearth of
positive, or good news stories about patients' experiences.
This review notes how there is limited information about partners' experiences related to
living with an ICD. The available knowledge again emphasises particular psychosocial
problems as well as the burden of additional responsibilities. This knowledge
predominantly reflects the experiences of older, female partners (Chapter 1.2.4).
As summarised in Figure 2.2, this review revealed three main issues that structure the
available information about living with an ICD. These issues are the technological aspects
of the ICD; patient experiences with the ICD, with particular reference to specific
complications, outcomes, and needs; and, partner experiences. This review also noted the
influence of different disciplinary interests and research approaches on this body of
information.
40
Figure 2.2:
Living with the ICD: Current knowledge
• Technological aspects of ICD
Ventricular arrhythmias: treatment modalities
The ICD: technological changes, therapeutic options, cost-effectiveness
• Patient experiences with the ICD
Device-related complications
Recovery outcomes
- coping with unknown: arrhythmias, ICD's functions, shocks
- resumption of activities, work, driving
- physical symptoms
- lifestyle changes
- psychosocial, physical, body image problems
Information and social support needs
- impaired concentration / retention of information
- medications, side effects
- ICD functions
- follow-up medical care
- coping strategies, resources
• Partner experiences
Emotional toll of patient's arrhythmia, ICD implantation
- concerns, fears, anxieties, frustrations, burdens
- protecting the patient, coping with emergencies
- psychological sequelae of ICD shocks
Physical toll
- physical tiredness: additional roles and responsibilities
Support needs
- sense of isolation
2.4.3
Knowledge deficits
There is a clear need to better understand the interface between the ICD as an implanted
technology and human existence. This review of the professional literature confirms the
continuation of several identified gaps in the current knowledge of living with an ICD
(e.g., Dougherty 1994; Jaarsma et al. 1995; Moser et al. 1993; Pycha et al. 1986; Saksena et al.
1995; Teplitz et al. 1990). It is suggested that a better understanding of living with an ICD
requires more insights about:
•
patients' perception of the ICD;
•
the experiences of younger, middle-aged and female patients;
41
•
transitions that arise over time in the experiences of patients and partners;
•
the experiences of younger and male partners and of male partners;
•
the reasons why partners avoid seeking social support from family and friends.
This review also suggests the need for a comprehensive understanding of how Australian
patients and partners perceive, interpret and experience living with an ICD. Such an
understanding will extend the beginning body of information about the Australian ICD
program and its recipients (e.g., Cowley, Conway & Hailey 1990; May et al. 1995;
McKinley et al. 1997; Reid, McKinley & Nagy 1999). Until recently, clinicians have had to
inform their practices with information obtained in overseas research, often conducted in
settings involving different health care practices, support facilities and social contexts.
Current practices also make it difficult for Australian clinicians to learn about living with
an ICD. Implantation of ICDs occurs infrequently. In addition, fragmented patterns of care
delivery deny specialist cardiac nurses the chance to follow a patient's progress through
the pre- and post implantation period to their later recovery. Nurses in non-cardiac wards
and community nurses have even less chance to learn about the ICD or patient and partner
experiences. Nurses and other clinicians also seldom get the chance to meet patients who
experience few problems and who might offer more positive accounts of living with an
ICD.
Information that contributes toward this understanding will provide clinicians with a
valuable resource for nurturing hope and confidence in prospective patients and their
partners and the provision of appropriate advice, support and post-discharge
interventions.
2.5
Conclusion
The review of the medical, psychiatric and nursing literature in this chapter revealed
valuable knowledge about the ICD's functions, efficacy, effectiveness, impact on patient
morbidity, and, the associated physical, psychological and social problems. This review
revealed two tensions. First, despite being a cost-effective, reliable and efficient implanted
device for reducing the incidence of sudden cardiac death, the ICD is associated with
42
notable consequences for patients and their partners. There is significant evidence about
the many potential and actual physical, psychological and social problems suffered by
patients and the psychosocial impact for partners. The second tension arises from a dearth
of published accounts indicating the positive aspects of living with an ICD, for patients or
for partners, possibly because little is also known of their longer term experiences, or the
transformations that occur over time in their comprehension of living with an ICD.
The research reported in this thesis has the modest goal of offering insights that might
redress some of these knowledge gaps. Its primary focus was to extend current awareness
of the everyday experiences, transitions and needs of Australian patients with an ICD and
their partners. This additional understanding was expected to contribute to improved
clinical practices by nurses and other health care clinicians who care for patients needing
and receiving an ICD, and their partners.
The next chapter explains the theoretical framework and the methods and processes used
to explore the phenomenon of living with an ICD with Victorian patients and partners.
43
SECTION
B
Exploring
and
Presenting
44
CHAPTER THREE
METHODOLOGY AND METHOD
3.1
Introduction
The primary focus of this research, guided by three research questions, was to understand
the phenomenon of living with an ICD. The first two questions respectively explored the
nature and meaning of being a patient, and the nature and meaning of being a partner. The
third question explored the nature and meaning of living with an ICD, with specific
attention to how the ICD as an implanted device is bodily experienced, understood and
integrated. The purpose was to provide a descriptive understanding of the everyday lived
experiences of patients and of partners, and an interpretive understanding of the ways in
which the ICD is perceived, integrated and comprehended. Emergence of this
understanding involved an iterative phenomenological exploration of experiential
descriptions provided by one group of Victorian patients and their partners.
The human science method of hermeneutic phenomenology provided an appropriate
theoretical framework for comprehensively understanding the phenomenon of living with
an ICD. Phenomenology is a philosophical mode of inquiry, with variant forms and
complex epistemological and ontological ideas, sometimes expressed in abstruse language.
Early forms of phenomenology were philosophical in their intent. Notable contributions
include Edmund Husserl's (1859-1938) transcendental descriptive phenomenology, Martin
Heidegger's (1889-1976) interpretive phenomenology and Maurice Merleau-Ponty's (19081961)
existential
phenomenology.
The
contemporary
model
of
hermeneutic
phenomenology described by van Manen (1990) is also grounded in philosophical ideas,
but it offers additional practical strategies for using phenomenology as a human science
research method. It provided a valuable framework to explore the phenomenon of living
with an ICD.
Briefly, phenomenology shares with other qualitative modes of inquiry the view that there
is an inseparable meaningful relationship between people and the things or phenomena of
their world. The focus of phenomenology is the intent to explore, describe and interpret
how a given phenomenon immediately manifests or presents itself to human awareness or
45
consciousness. The interest is in original experience, rather than interpreting human
phenomena within the context of particular social, biological or psychological theories
(Crotty 1996; van Manen 1990).
The first section of this chapter reviews the contribution of phenomenology to nursing's
ways of understanding human health and illness experiences. The discussion then
examines the philosophical basis of van Manen's (1990) approach to hermeneutic
phenomenology and research. The final section describes the use of these ideas and
activities in the processes and conduct of this inquiry.
3.2
Phenomenology as a mode of nursing inquiry
Nursing's interest in qualitative research methods, of which phenomenology is one
example, began approximately three decades ago. Prior to this period, nursing's formal
body of knowledge primarily relied on empirico-analytical science and its quantitative
modes of inquiry. North American nurse scholars who acquired higher academic degrees
in the social sciences were prominent in expanding nursing's knowledge development.
Although empirico-analytical science provided explanatory knowledge about measurable
phenomena, there was a need for alternative ways of understanding the other phenomena
inherent in nursing (Meleis 1985). Carper's (1978) seminal work identified how, in addition
to empirical knowledge, nurses required and used ethical, aesthetic and personal ways of
knowing. It also supported the growing scholarly interest in using qualitative modes of
inquiry to explicate these knowledge forms (e.g., Lynch-Sauer 1985; Meleis 1985; Morse
1991; Munhall & Oiler 1986; Swanson & Chenitz 1982). Qualitative research offered the
means for understanding and describing the everyday lived experiences, concerns and
vulnerabilities of patients, families and nurses.
It is not surprising that phenomenology, with its philosophical interest in human
experience, became valued as a useful mode of extending nursing's understanding of
health and illness related phenomena. Nevertheless, the first reported use, namely
Paterson and Zderad's (1976) existential phenomenological exploration of nursing practice,
was poorly received. Appreciation of its rich contribution for understanding the
complexity of nursing practice occurred a decade later, by which time nurses were more
46
familiar with phenomenology's uniquely different language, methods and interests in
embodied experience (Meleis 1985).
Nursing's subsequent understanding of phenomenology was helped, in part, by the
applied use of phenomenology in the disciplines of psychology, psychiatry and education
(e.g., Barritt et al. 1985; Colaizzi 1978; Giorgi 1970; Godkin 1980; Kestenbaum 1982;
Langeveld 1983a, 1983b; Toombs 1992). As with nurses, researchers in these disciplines
struggled with the complex philosophical ideas and language of phenomenology and
framed their research on the available procedural research guides (Cohen & Omery 1994;
Embree et al. 1997; Koch 1995; Oiler 1982, 1986; Omery 1983). These guides, developed by
various North American psychologists (e.g., Colaizzi 1978; Giorgi 1970; Spiegelberg 1967,
1970, 1975, 1976a, 1976b, 1985; van Kaam 1966), translated complex philosophical ideas
into practical step-by-step procedures for conducting a phenomenological study. These
procedures have since been adopted by numerous researchers interested in exploring the
specific qualities, nature and meaning of various phenomena.
The proliferation of phenomenological research within nursing in the past decade
contributed rich understandings of the lived experiences of patients, family members or
nurses. Such understandings complemented nursing's interest in holistic, humanistic
caring practices (Benner & Wrubel 1989; Bergum 1989; Munhall & Oiler 1986; Oiler 1982,
1986; Omery 1983; Parse 1987; Ray 1990). Notable contributions have been made by several
North American scholars, including Benner (1984), Benner & Wrubel (1989), Diekelmann
(1992), Parse (1981, 1987, 1994) and Ray (1987, 1990, 1994). There is also a growing body of
phenomenological scholarship within Australia, including the contributions offered by
Bartjes (1991), Koch (1994) Madjar and Walton (1999), Taylor (1994), Walters (1992) and
Wilkes (1991).
Scholarly debates over the past two decades clarified epistemological differences between,
as well as the need for, quantitative and qualitative modes of inquiry in health care (Baum
1995). Nursing's use of phenomenology has also been the object of several timely
reflections and critiques (e.g., Baker, Wuest & Stern 1992; Cohen & Omery 1994; Crotty
1996; Holmes 1996; Koch 1995; Lawler 1998; Morse 1991; Paley 1997, 1998; Walters 1995;
Yegdich 1999). For example, concern is expressed about nursing's alliance with the
philosophies of Heidegger, given recent evidence about his anti-Semitic activities in
Germany during World War II (Holmes 1996). Other concerns relate to inadequate
explanations about the specific philosophical ideas informing a specific study, the
47
misinterpretation of specific phenomenological principles, or the use of methods that are
incongruent with an espoused philosophical framework.
Methodological inconsistency in nursing, and possibly other social disciplines, is not
surprising. Such problems may reflect the fact that phenomenology actually comprises a
diverse body of philosophical thought, with the philosophies of Husserl and Heidegger
most cited by nurses. These philosophies are difficult to comprehend, open to varied
interpretation, and offer little direct guidance for informing particular research strategies.
The above procedural guides offered researchers a bridge between complex philosophical
ideas and the directions for a systematic research approach. There is, however, little
acknowledgment that these procedural guides specifically derive from Husserl's
descriptive phenomenology (Cohen & Omery 1994). Problems thus arise if the language
and ideas in a study are more representative of hermeneutic or existential forms of
phenomenology.
Crotty's (1996) provocative critique argues that nurses have developed a new form of
phenomenology bearing little resemblance to the original philosophical ideas. His work
provides a timely reminder for a methodical approach to understanding and using
phenomenology. However, his total reliance on specific examples of North American
nursing
research
may
be
misleading
since
there
are
many
other
forms
of
phenomenological research undertaken by nurses (Lawler 1998). Further, his philosophical
focus ignores the ethical and practical issues inherent in nursing research (Lawler 1998).
Information about the complex issues of health care has considerably expanded following
contributions offered by phenomenological research, together with that informed by
humanistic, critical social science and existential thought. Much is now understood, for
example, about the social and political construction of health, the nature of particular
illness situations, the meaning of being and the impact of medical technologies on the
quality of human existence (e.g., Baum 1995; Bronzino, Smith & Wade 1990; Jones 1995;
Kestenbaum 1982; Koenig 1988; Morse 1992; Morse & Field 1995; Plough 1986; Pope &
Mays 1995; Toombs 1992; Turner 1992). As noted in the preceding chapters, much still
needs to be learned about the meanings, dimensions, complexities, lived experiences and
practical concerns of living with an ICD. The following discussion describes how van
Manen's (1990) approach to hermeneutic phenomenology offered the means for exploring
this phenomenon. Walton and Madjar (1999, p. 1) suggest this research approach "... can
help us grasp the ordinary, the unexpected and the ineffable elements of human
48
experience in health and illness". Nevertheless, as explained below, its use required careful
attention to the reality of exploring a sensitive research issue with vulnerable participants.
Explication of the various tensions inherent in this research takes note of Lawler's (1998, p.
110) concern that the practice reality of nursing directly influences the conduct of a
phenomenological inquiry:
There are methodological, ethical, ontological, clinical, and pragmatic issues that
nurses have to negotiate when they take borrowed methodologies out of what
could be called their epistemological ambience-of-origin and into a clinical
context. Furthermore, these methodologies are being relocated from a
predominantly academic context to the world of practice: nursing is yet to
systematically explore the consequences of that relocation both on researchers (as
individuals) and methodology.
3.3
Hermeneutic phenomenology: Max van Manen
3.3.1
Background
As an educationalist Max van Manen's academic background reflects his interest in the
German tradition of hermeneutic human science and the Dutch tradition of descriptive
phenomenological pedagogy (van Manen 1990, pp. ix, 2). Thus, as explained in his text,
Researching Lived Experience: Human Science for an Action Sensitive Pedagogy (1990), his
practical research methodology integrates the ideas of phenomenology, hermeneutics,
semiotics and pedagogy.
Van Manen (1990, pp. ix, 2) explains hermeneutic phenomenology as a human science
mode of inquiry that in intent, method and outcome is "... avowedly phenomenological,
hermeneutic, and semiotic or language oriented". Its hermeneutic direction reflects an
interpretation of textual descriptions to disclose concealed meanings and thus, to better
understand the lived experience of human phenomena. Its semiotic approach emerges
through the use of written reflective analysis of textual data and the use of thoughtful
language to explore and understand a phenomenon's experiential significance and
meaning. Finally, the pedagogical interest of phenomenology lies in its potential to inform
disciplinary understanding and improve related practices.
49
Van Manen's many international publications, lectures and speaking engagements
demonstrate the value of hermeneutic phenomenology for exploring the phenomena of
education and health care (van Manen 1984a, 1984b, 1989, 1995, 1997, 1999). His work has
also informed recent examples of phenomenological research in nursing (e.g., Bergum
1989; Madjar & Walton 1999; Ray 1987, 1990).
3.3.2
Philosophical foundations
Van Manen's (1990) approach to hermeneutic phenomenology merges an eclectic body of
philosophical thought with the practical intent to provide a rich understanding of the
nature and meaning of a given phenomenon. In brief, he explains hermeneutic
phenomenology as a mode of systematic inquiry that begins with a thoughtful interest in
the awareness, consciousness and experience of a given human phenomenon. Through
reflective thematic analysis, writing and re-writing the nature and meaning of the
phenomen is explicated, described and interpreted. As reviewed in the following section,
van Manen's (1990) methodology includes the philosophical concepts of hermeneutics,
everyday lived experience, understanding, phenomena, and pedagogy. The review of
these concepts also refers to various related philosophical texts and scholarly critiques
(e.g., Bossert 1985; Crotty 1996; Heidegger 1962; Kockelmans 1967; Langan 1970; Embree et
al. 1997; Merleau-Ponty 1962; Solomon 1987; Spiegelberg 1967, 1970, 1975, 1976a, 1976b,
1985; Stapleton 1983; Stewart & Mickunas 1974).
3.3.2.1
Hermeneutics and everyday lived experience
Van Manen (1990, p. 11) suggests that a hermeneutic phenomenological understanding of
a phenomenon begins with uncovering "... experiential meanings as we live them". It
involves a reflective and thematic examination of lived experience, that is, the everyday
situations and events through which life is assigned meaning (van Manen 1990, p. 37). As
the locus of all meaning, lived experience is "... the starting point and end point of
phenomenological research" (van Manen 1990, p. 36).
The importance of lived experience in van Manen's (1990) phenomenology draws heavily
from Wilhelm Dilthey's (1833-1911) earlier human science methodology. For Dilthey
50
(1900/1976 trans., pp. 175-178, 249), lived experience referred to the engaged or intentional
relationship between the self and the world. This relationship frames the immediate
experience of a given phenomenon and, as evident in various expressions and actions, the
individual's understanding of its possibilities, significance and meaning. Dilthey (1900)
believed it possible to collectively understand a given experience through individual
descriptions.
Dilthey's (1900) methodology is also evident in van Manen's (1990) hermeneutic approach.
Hermeneutics had long been used as a means for interpreting written texts. Using the
processes of description, reflection and interpretive critique, Dilthey demonstrated how
hermeneutics could be used to disclose the meaning of a specific lived experience.
Specifically, his method offered the means for interpreting textual descriptions or
expressions (such as speech, gestures, actions, texts and music) of lived experience (including
its temporal and historical qualities). The purpose was to develop an understanding
(verstehen) of the recognisable and meaningful patterns of the lived experience (Dilthey
1900, pp. 175-178, 259). As discussed below, van Manen's (1990) hermeneutic
phenomenology similarly involves a to-and-fro inquiry process that explores the
particulars of lived experience examples to uncover the universal or collective meaning of
the phenomenon as it is experienced.
3.3.2.2 Understanding human phenomena
Van Manen's (1990) quest for understanding human phenomenology also draws insight
from Heidegger (1962). Heidegger's approach to phenomenology has been variously
described as existential (Solomon 1987), hermeneutic (Barritt et al. 1985) or ontological
(Spiegelberg 1976a) in intent. Importantly, Heidegger (1962) also saw everyday experience
as the starting point, but his quest was an ontological search for the meaning of Being. In
contrast, van Manen (1990, pp.126-127) expresses an ontic interest in concrete lived
experience in his desire to make "... some aspect of our lived world, of our experience,
reflectively understandable and intelligible". Heidegger's (1962) philosophy nevertheless
informs van Manen's (1990) work in two ways. First, van Manen (1990), in keeping with
Crotty (1996), agrees with Heidegger's (1962) desire to expose the socially inherited and
often unreflected meanings ascribed to particular phenomena. The intent is to better
51
understand the phenomenon as it is immediately perceived and encountered (van Manen
1990).
Second, van Manen (1990) shares Heidegger's (1962) view that language is a pivotal
medium of hermeneutic inquiry. First, "... lived experience is soaked through with
language" (van Manen 1990, p. 38). Language expresses and shares that experience. It is
thus the medium for understanding, interpreting and communicating meaning (Dilthey
1900; Heidegger 1962, pp. 188-195; Kestenbaum 1982; van Manen 1990, pp. 13-19).
Language is also the medium for phenomenological inquiry processes of wonder,
thoughtful questioning, reflection and interpretation. Hermeneutic phenomenological
inquiry is in effect, a "language of thinking" because its reflective discourse strives to "...
deepen our understanding of human life" (van Manen 1990, p. 17). Understanding — that
is, naming or likening what is grasped or perceived as or like something else —
linguistically discloses, communicates and shares insight of its possibilities and meaning
(Heidegger 1962, pp. 188-195). It thus becomes the medium for addressing the questions of
"... what is something 'really' like. What is the nature of this lived experience?" (van Manen
1990, p. 42).
Language is, however, also a constraint for phenomenological inquiry. The English
language in particular is often inadequate when it comes to authentically capturing the
exact nature and meaning of human experience (Heidegger 1962; van Manen 1990).
Although avoiding Heidegger's (1962) use of hyphenated terms, van Manen (1990, pp. 1213) shares the view that the written outcome of this mode of inquiry is a "poetizing"
activity. In its organisation, content and style the phenomenological description strives to
grasp the mystery, complexity, richness and possibilities of a given experience (van Manen
1990, pp. 12-13, 1995, 1997). Van Manen (1990), like Heidegger (1962), suggests
the
discovery of the possibilities of a given experience involves examination of its temporal,
historical and contextual aspects. Unlike Heidegger's ontological intent to disclose the
meaning of Being, or that which is the central feature of existence, van Manen (1990)
focuses on the existential significance of how a phenomenon is experienced. As noted
shortly, this aspect of his hermeneutic phenomenology also benefitted from insights drawn
from Merleau-Ponty (1962).
3.3.2.3 Phenomenology: Different paths of inquiry
52
Van Manen's (1990, pp. 11-12) interwoven understanding of the concepts of
'phenomenology', 'phenomena' and 'lived experience' integrates a complex body of earlier
philosophical thought. For van Manen (1990, pp. 11, 39), phenomenology is the "...
explication of phenomena as they present themselves to consciousness" and the "... return
to the things themselves". At first, this explanation suggests an Husserlian influence in van
Manen's (1990) phenomenology. Husserl conceived phenomenology as a method of
obtaining a true or certain awareness and thus knowledge of human phenomena (Crotty
1996; Solomon 1987). He conceived three complex reductive strategies to ensure the only
content of consciousness was an immediate awareness of a phenomenon's specific
appearances. His epoch?, commonly referred to as bracketing, suspends the natural attitude
or everyday assumptions, theories or pre-conceptions about the world and its objects
(Crotty 1996; Solomon 1987). His transcendental reduction, by ridding consciousness of all
but the pure Ego (the transcendental source of meaning), enabled identification of
cognitions or specific aspects of the phenomenon (Crotty 1996). Finally, the eidetic reduction
determines the phenomenon's essential and unique features (Crotty 1996). Scholars have
since critiqued these reductive phenomenological strategies and Husserl's avoidance of
ontological issues. Further, they note the methodological incongruity of his philosophy for
studying the meaning of human phenomena (e.g., Cooper 1990; Paley 1997; Solomon 1987;
Stapleton 1983; Stewart & Mickunas 1974).
Van Manen's (1990) hermeneutic phenomenology avoids the epistemological focus of
Husserlian phenomenology and the ontological focus of Heideggarian phenomenology.
Rather, his approach makes use of the existential insights offered in Merleau-Ponty's (1962)
approach to phenomenology. Following Merleau-Ponty (1962 p. vii), van Manen (1990, pp.
35-39) notes the desire to disclose and describe the preverbal possibilities, significance and
meaning inherent in various human experiences. He suggests this involves questioning the
particular spatial (lived space), temporal (lived time), relational (lived human relations)
and corporeal (lived body) aspects of a particular existence. As revealed in later chapters,
these existential concepts provided illuminating paths for exploring the phenomenon of
living with an ICD.
53
3.3.2.4 Phenomenology and perception
Phenomenology seeks to describe the immediate perception, or embodied but unreflected
intelligible awareness of a given phenomenon (Merleau-Ponty 1962, pp. viii, 67-70).
Existence, however, represents an engaged involvement, or being-in-the-world, such that
perception of a specific object is to some extent layered with social, cultural or disciplinary
meanings, interpretations or theories (Heidegger 1962; Merleau-Ponty 1962; van Manen
1990). The phenomenological quest is to expose these layers of meaning and accurately
describe the object as it is immediately perceived (Crotty 1996). Immediate perception is,
however, also perspectival, that is, it discloses certain aspects and possibilities while
concealing or hiding other aspects (Merleau-Ponty 1962; van Manen 1990). Merleau-Ponty
(1962, p.42) captured the juxtaposition of this awareness: "[t]o perceive is to render oneself
present to something through the body. All the while the thing keeps its place within the
horizon of the world."
3.3.2.5 Phenomenology as pedagogy
The third philosophical perspective in van Manen's work (1990, pp. 12, 141, 151-153; 1996)
is the link between phenomenology and pedagogy. He suggests pedagogy is much more
than the usual definition of "... act of teaching, instructional methodology, curriculum
approach, or education in general" (1990, pp. 142-143). He sees it as a state of being and
acting embedded in one's questioning and wondering about acts such as parenting,
teaching, nursing and more broadly, about life itself. Similarly, as with Merleau-Ponty
(1962, pp. vii, xxi), he believes that phenomenological inquiry begins in wonder. Using
reflective thematic analysis and written questioning (explained shortly), this mode of
inquiry illuminates the depth, breadth and possibilities of lived experience. This
understanding has the potential to inform and transform the reader's ways of acting
toward others, for example, as a parent, teacher or nurse.
3.3.3
Research activities and procedures
Given the infinite variety of human phenomena, possible questions and contexts, van
Manen (1990) notes there is no single definitive method of phenomenological research. His
54
account of hermeneutic phenomenology suggests several fundamental research activities
(van Manen 1990, pp. 30-34). These activities include turning to the nature of lived
experience; investigating experience as lived; conducting phenomenological reflection and
thematic analysis; writing the hermeneutic phenomenological description; maintaining an
oriented research focus and, balancing the parts and the whole of the research. The
following discussion of each activity outlines their place in this research, with further
detail included in the later explanation of the research methods.
3.3.3.1 Investigating lived experience
Van Manen (1990, p. 40) suggests that a phenomenological inquiry arises from the
researcher's orientation in the world as a parent, teacher, nurse and partner. This engaged
stance underpins the concern, interest, sense of wonder and desire to better understand a
given phenomenon and its meaning. After identifying the phenomenon of interest,
researchers begin by recording their own related preconceptions or beliefs, assumptions
and prejudices. Ongoing reflection and evolving understanding of the phenomenon
unmasks the taken for granted or "... shallow or concealing character" of these
preconceptions (van Manen 1990, p. 47).
The next step according to van Manen (1990) is an early review of the literature. First, such
a review ensures the originality and potential contribution of the proposed research.
Second, its insights help clarify and inform the investigation. In contrast, some nurse
researchers (e.g., Oiler 1982, 1986; Streubert & Carpenter 1995) suggest omitting the
literature review until completion of the data analysis to minimise any misrepresentation
of the data. In the current research an early literature review was undertaken. The
strategies used to ensure the quality of the data analysis and written phenomenological
texts are explained later.
Van Manen (1990, 1995) recommends numerous potential sources for the experiential
descriptions that may be used as textual data in a phenomenological inquiry. Examples
include verbal or written descriptions from people with personal experience of the
phenomenon, biographies, fictional accounts or graphic pictorial or poetic images. With
these examples forming the textual data, the researcher conducts a reflective, thematic and
written analysis that descriptively interprets the nature and meaning of the phenomenon
55
(van Manen 1990, 1995). Support for this phenomenological approach reflects the
established practices of Langeveld (1983a; 1983b) and other scholars from the Dutch school
of phenomenology (van Manen 1990; 1996). As detailed later, experiential descriptions
offered by patients with an ICD and their partners were the primary data for exploring the
phenomenon of living with an ICD.
It is worth noting that other scholars (e.g., Crotty 1996; Paley 1997; Solomon 1987; Yegdich
1999) argue that phenomenological research should be a first-person form inquiry, with
the researcher acting only as a guide. In the first-person approach the researcher guides the
participant — selected because of their immediate or personal knowledge of the
phenomenon — to lay aside their assumptions, reflect on, intuit and describe their
immediate experience (Crotty 1996). As detailed later (Chapter 3.4.4), ethical concerns
supported the decision to follow van Manen's (1990) recommendation to reject this firstperson approach:
It would be folly to expect ... participants ... to reflect phenomenologically on one's
research question. Phenomenological reflection and inquiry is indeed a difficult
process and therefore is the responsibility of the phenomenologist-researcher (van
Manen, M., 1996, pers. comm., 9 Dec.).
3.3.3.2
Questioning, reflecting, thematic analysis, description
According to van Manen (1990), phenomenological inquiry comprises a written form of
intuiting experiential examples of a phenomenon, theme identification, a dialogical
questioning and wondering, and a thoughtful description and interpretation of meaning.
The intent is to make unfamiliar that which is otherwise taken-for-granted, so that a
phenomenon can be understood in a fresh, new or more thoughtful way (Bossert 1985;
Kestenbaum 1982; van Manen 1990). Intuiting or a contemplative concentration on each
experiential example discloses an understanding of the phenomenon's particular qualities
(Spiegelberg 1976b; van Manen 1990). As first explained by Dilthey (1900), the to-and-fro
hermeneutic reflection extends understanding from individual or particular examples to a
broader understanding of the collective or general focus of interest:
Understanding alone surmounts the limitation of the individual experience ...
Extending over several people ... it widens the horizon of the individual life and ...
opens up the path which leads from the common to the general. ... What persons
have in common is the starting-point for all the relations between the particular
and the general in the human studies (Dilthey 1900, p. 186).
56
This bridging of the
"... the gap between stories of individual experience and the
phenomena of human existence" (Walton & Madjar 1999, p. 8) collectively discloses the
dimensions, possibilities and qualities of a phenomenon (Dilthey 1900 pp. 186, 187-188;
van Manen 1990). As explained later, the current research began with concrete, individual,
experiential descriptions, progressed to a collective understanding of patients' and the
partners' lived experiences, and concluded with an interpretation of the phenomenon of
the ICD-as-experienced.
3.3.3.3 Phenomenology as written description
As described by van Manen (1990, pp. 27, 41, 78), hermeneutic phenomenology is a written
form of reflective scholarship that contributes a plausible, aesthetic, pedagogical
description of a phenomenon. The first of two forms of meaning inherent in the description
identifies the phenomenon's cognitive or conceptual aspects (van Manen 1990, 1996).
Second, the aesthetic and poetic style of the description reflects its otherwise often
inexpressible meanings, qualities or possibilities.
Van Manen (1990, pp. 168-173) suggests four ways that a phenomenological description
can be developed into an original, strong and thoughtful text. A thematic framework
structures the description around specific themes. This approach was adopted in the
current research. An analytical structure focuses more on what is problematic in alternative
theoretical representations of the phenomenon, whereas an exegetic description explores
other philosophical or phenomenological accounts of the phenomenon. Finally, an
existential description is directly structured around the phenomenon's corporeal, spatial,
temporal or relational qualities. Regardless of the structure or detail of the description, no
single account can address the full complexity of a given phenomenon. It is always to some
extent limited by the researcher's orientation, interest and questions (Burch 1989; van
Manen 1990).
3.3.3.4 Hermeneutic phenomenology as critique
Opinion differs about the extent to which phenomenology is a form of social critique. One
criticism (Paley 1998) relates to the inability of phenomenology to critique false
57
consciousness, that is, the way dominant ideologies or modes of thought indelibly frame
self-understanding. As with Crotty (1996), van Manen (1990) agrees that phenomenology
cannot achieve the political and social critique inherent in critical social science theories.
He does, however, contend that exploration of a given phenomenon questions "... the
world's very secrets and intimacies..." (1990, p. 5). Phenomenology questions the everyday
language, labels, symbols and assumptions usually ascribed to the phenomenon. This
descriptive process of "... unnaming and unknowing" (Walton & Madjar 1999, p. 8) is
pedagogical. It offers the reader the opportunity to become "... thoughtfully aware of the
consequential in the inconsequential, the significant in the taken-for-granted" (van Manen
1990, p. 8) and, thus, more aware of the phenomenon's complexity (Bossert 1985;
Kestenbaum 1982; van Manen 1990).
3.4
Researching living with an ICD: the processes
The following section interweaves van Manen's (1990) ideas in its explanation of the
activities and processes associated with a hermeneutic phenomenological exploration of
the phenomenon of living with an ICD.
3.4.1
The research context
This research was the second component of a project that reviewed the outcomes and
experiences of Victorian patients with an ICD and their partners. The first component
reviewed the Victorian ICD program through a survey of the outcomes for its adult
recipients. As summarised earlier (Chapter 1.3.2), the survey produced information on
patient demographics, ICD-related experiences, access to education or support facilities,
use of health care resources and everyday activities. The survey findings offer clinicians
and others insights into the context and broad outcomes of ICD implantation for Victorian
patients (Reid, McKinley & Nagy 1999). In addition to providing an insight into the context
of the present research, the survey enabled access to its participants.
58
3.4.2
The research plan
The research activities in the current exploration of living with an ICD closely followed the
above approaches recommended by van Manen (1990). The initial activity included a
written account that explained the origin of my curiosity about this phenomenon and the
preconceptions derived from related personal and clinical experiences. This account
identified the specific concerns, interests and motivations that made it significant to pursue
a better understanding of living with an ICD (Chapter 1.2.2; Appendix B). Regular reviews
of these preconceptions minimised their influence on the analysis and interpretation of the
data.
An initial review of the related professional literature served different purposes. It
confirmed that more information is needed about the experiences of Australian patients
and partners. It also indicated the need to better understand, from the perspectives of
patients and partners, what it is like to live with an ICD. Along with the above
preconceptions, insights derived from the literature review were laid aside during analysis
of the participants' experiential accounts. Steps taken to ensure the quality, credibility and
plausibility of the outcomes of these processes are described later.
Second, the review of the related literature was a necessary requirement for obtaining
institutional approvals for access to patient names and addresses for the survey that
formed the first part of the overall project. Applications for this information were made to
each of the five hospitals that implanted ICDs. Each application required the written
support for the project, and thus the release of patient data, from the Director of Nursing,
Cardiologist (who did the ICD implantations), Director of Cardiology and Director of
Medical Services. Each of these persons received a full research proposal, including a
condensed review of the current related literature. Their written support enabled the
successful application for ethics approval made to the Institutional Ethics Committee of
each hospital and of The University of Technology, Sydney (Appendix A6).
59
3.4.3
Primary data: Experiential descriptions
In keeping with van Manen's (1990, 1995) recommendations, the primary data for this
research took the form of tape-recorded and transcribed experiential descriptions from
patients and from partners, that is, people with personal knowledge of living with an ICD.
Unlike many other health care experiences, living with an ICD is a relatively new
phenomenon. Descriptions of this experience have thus not yet made their way to potential
alternative sources, such as biographical or fictional literature, movies, artistic works or
poetry. As noted, the professional literature presented a fragmented view of specific
variables or aspects of patients' and partners' experiences.
3.4.4
Ethical concerns
The application for ethics approval recognised and addressed several potential concerns
associated with this inquiry. It was assumed that the focused discussion on living with an
ICD could include sensitive issues for vulnerable research participants. Participants
included patients and partners whose previous experiences included the patient's lifethreatening arrhythmic events, ICD insertion and dependency on an implanted device to
prevent sudden cardiac death. Discussions with the chairperson of three Ethics
Committees confirmed the view that discussions of living with an ICD might arouse
discomforting and possibly distressing memories for participants. Strategies for sensitively
minimising this risk and informing an ethical approach to this inquiry were based on
several qualitative research texts (e.g., Atkinson 1993; Behi & Nolan 1995; Bouma 1993;
Demi & Warren 1995; Lawler 1991; Munhall 1988; Neuman 1994; Punch 1986, 1994; Ramos
1989; Shakespeare, Atkinson & French 1993).
Care was taken to minimise invasion of the participants' privacy and respect their
autonomy. At the outset of the project, the implanting cardiologist at four hospitals
provided eligible patients with an introduction to the survey (Appendix A1), and the
opportunity to refuse further contact (Appendix A2). Consenting patients received a
questionnaire and an associated Explanatory Statement (Appendix A3). Finally and of
specific relevance to the present research, the last page of the questionnaire invited
patients and their partners to consider participating in an interview to explore their
60
experiences in more depth. Interested respondents could either return the pre-printed form
in the stamped and addressed envelope provided, or telephone using a reverse charge
telephone facility.
Participants in the present research received an Explanatory Statement (Appendix A4)
describing the purpose and intended process of the conversational interview. The
Statement warned of the potential risk of discomfort when discussing vulnerable
situations. Participants were assured of the researcher's sensitivity to any discomfort and
readiness to offer immediate emotional support and care, their right to pause the recorder
at any time and, if so desired, to withdraw from the research. Complete confidentiality
could not be guaranteed because the small population of patients with an ICD increased
the likelihood of potential recognition by some health professionals. As noted in the
Explanatory Statement, steps taken to minimise this risk included the use of pseudonyms
in the thesis and the use of aggregated coded data in public presentations related to the
research. Participants were also mailed a Consent Form (Appendix A5), with the advice
that it was to be signed at the time of our meeting.
3.4.5
Recruiting participants
Thirty telephone calls were received from both patients and partners in response to the
questionnaire invitation about the present research. Many callers could not take part in an
interview, but still wanted to briefly share their stories, report specific incidents, or relate
their achievements after ICD implantation. Few callers knew anyone else with an ICD.
This was not surprising because two of the five hospitals with an ICD program had less
than 15 patients, each of whom received their device at different times. There was also no
access to a hospital-based or State-wide support group. The few callers who sought more
information or specific contact with others were referred to the implanting cardiologist at
each hospital.
Follow up contact with potential participants occurred approximately two weeks after they
were mailed the Explanatory Statement (Appendix A4). Questions were answered and
arrangements made for our meeting. Except for one patient (Mr A) who provided verbal
consent, participants signed a Consent Form (Appendix A5) on the day of our
conversation.
61
3.4.6
The participants
According to van Manen (1990), the primary criteria in selecting participants is that they
should have direct, personal knowledge about the phenomenon being explored and be
able to readily discuss their experience. There is limited scholarly advice about the most
appropriate number of participants for a phenomenological study. Current suggestions
range from one participant, to a group of between five and twelve people (Morse 1994; Ray
1990, 1994; Sandelowski 1995).
The participant group for this research included seven patients (four males, three females)
and six partners (four females, two males). Work commitments prevented one partner's
involvement. The patient group reflected considerable demographic, geographic and
experiential diversity. Differences in their ICD-related experiences related to the model of
ICD implanted, time since insertion, the number of ICD shocks and post-implantation
events and activities. The next chapter summarises their individual experiences, and
describes their specific social and geographic contexts. Such contexts influence how a
given phenomenon is experienced and understood (Dilthey 1900; Morse 1991; Ray 1994).
3.4.7
Conversational interviews
Tape-recorded conversational interviews were held in the participants' home. Participants
were invited to describe and discuss their particular experiences related to living with an
ICD. Use of a conversational style of interviewing encouraged an open, interactive,
reflective and engaged discussion (Kvale 1984; van Manen 1990). This discussion elicited
rich descriptions of the experience of living with an ICD.
After introductions and often a cup of coffee, the initial 10 to 15 minutes was spent
reviewing the purpose and process of our conversation. This helped to establish a warm
atmosphere for participants to talk about their experiences. In three instances, the patient
was interviewed and then left the room during the interview with their partner. On three
other occasions, the patient and partner opted to provide a shared discussion and
description of their related and mutual experiences.
62
Each conversation began by inviting the participant to recall the situation that pre-empted
their need for an ICD, and to share their experiences of receiving and living with an ICD.
This invitation elicited discussion of relevant events, incidents, stories and anecdotes. One
patient (Mrs E) had a written list of events as a reminder. Attentiveness and sense of
engagement in the conversations followed Wolcott's (1990, p. 127) reminder to "... talk
little, listen a lot" and van Manen's (1990, p. 67) advice to "...stay close to the experience at
hand". Reflective or clarifying prompts such as, "In what way?", or "Can you give me an
example?" invited elaboration of specific issues, clarification of particular ambiguities or
further insights, nuances or issues. Periods of silence for considered thought included
being alert for any hesitancy, uncertainty or discomfort.
Flexibility was also needed. One patient (Mr A), very early in our conversation, explained
he would answer specific questions, but not waste time reflecting on the meaning of
things. A quick transition from a reflective to a more direct questioning approach was
made easier by having to hand a pre-prepared list of possible discussion topics. This list,
derived from the related literature, had been intended as an emergency prompt to avoid
awkward prolonged silences or stage fright (Appendix C1). Other questions arose from his
responses. He, as with other participants included numerous anecdotes, stories and
metaphors about the ICD and the related experiences.
Many participants valued the new insights and meanings that arose in their discussions of
various experiences. For example, one patient (Mrs E) realised the significance of home
and its surrounds for her recovery.
On average, the conversations lasted 90 to 120 minutes, concluding when the participant
indicated there was nothing further to add. Typically, their closing comments
acknowledged their comfort and appreciation at being able to openly share, discuss and
reflect on their experiences with an interest and engaged listener. The expressed hope that
their comments might help others understand what it was like to live with an ICD often
led to interest in the experiences of other Victorian patients and partners. Questions about
other patients related to situations such as device discomfort, ICD shocks, driving,
working or travel. Partners more frequently wondered whether their vulnerability,
responsibility and concerns were usual. In this sense they also "... cross[ed] the threshold
from individual interpretation of the actions and events of their lives to make contact with
a larger range of common experiences" (Churchill & Churchill 1982, p. 74). Those who
63
expressed an interest received broad information drawn from the earlier Victorian survey
(Reid, McKinley & Nagy 1999), related overseas literature and current clinical practices.
A letter of appreciation was mailed to each participant within a few days of our meeting.
Two couples who so desired received a copy of the transcript of our conversation. No
participant accepted the invitation to delete or add further information. No participant felt
the need for a second conversation, with some noting that having discussed their
experiences in depth, their interest now lay in the present and future.
3.4.8
Audiotape transcription and data storage
The slow process of transcribing the tape recorded conversations into a computer file
began the same evening or next day. A back up copy of each tape provided protection in
the event of mechanical problems. Fresh memories and multiple replays of the taped
conversation enhanced the accuracy of transcribing words, inflections, aside comments,
laughter and pauses (Poland 1995; Sandelowski 1994a). Each participant was given a
pseudonym. The transcripts also omitted identifying information about various health care
personnel, hospitals or local towns. The tapes, back-up floppy disks, printed transcripts
and field notes were numerically coded to facilitate cross referencing. Tapes, printed data
and floppy disks were stored in a locked filing cabinet, and locked computer files
protected access to computerised information.
On average, each conversation ranged from 15,000 to 30,000 words. The printed transcript,
of usually more than 30 pages, included line numbering for cross-referencing and wide
margins. Relevant field notes, such as when a person left or entered the room were
transcribed into the left margin. The right margin of each transcript provided room for
subsequent hand-written statements, questions and reflections.
3.4.9
Documenting the processes
In keeping with van Manen's (1990) advice, this phenomenological inquiry integrated an
approach of openness, creativity and flexibility. Four strategies were used to document the
64
influences, decisions and ideas shaping the inquiry's conduct, processes and outcomes.
Such recorded reflectivity improves the rigour and trustworthiness of this type of inquiry
(Clarke, James & Kelly 1996; Koch 1998; Punch 1986; Schwandt & Halpern 1988;
Shakespeare, Atkinson & French 1993).
The first strategy recorded initial preconceptions and assumptions about living with an
ICD (Appendix B). Second, a computerised personal journal listed reflections on the
research progress, including ethical, practical and methodological issues and interactions
with health care staff and participants. The journal thus provided a record of early issues,
strategies and decisions that may have been forgotten as the focus shifted toward data
analyses, interpretation and significance.
Third, field notes recorded immediate impressions, issues and reflections related to the
meeting and conversations with participants. As intended, taking a prepared Field Note
Sheet (Appendix C2) facilitated this process. Headings of 'Equipment', 'Self', 'Research
Setting and Context', 'Ethical-methodological issues' and 'Analytical ideas-reflections'
provided frameworks for otherwise unrecorded biographical, historical and experiential
information. Transcription of relevant field notes onto the transcripts ensured their review
during analyses of the data.
Finally, an audit trail (Appendix D) systematically detailed the timing and context of
practical and methodological decisions, related problems and emergent insights of the
analytic processes. This documentation can help others consider the applicability of the
research design and processes for similar questions, contexts and interests and the
soundness of the analytic and interpretive processes. Advice for preparing the audit trail
came from several qualitative research texts (e.g., Huberman & Miles 1994; Koch 1994;
Lincoln & Guba 1985; Marshall & Rossman 1995; Schwandt & Haplern 1988; Wolcott 1990).
65
3.5
Phenomenological analysis, reflection, description
3.5.1
Overview: Analysis processes and directions
The following section describes the phenomenological analysis of the participants'
experiential descriptions. As summarised in Figures 3.1 and 3.2, three iterative levels of
analysis contributed to a deeper understanding of the phenomenon of living with an ICD.
Each level involved extensive re-reading and concentration, intuitive contemplation,
reflection and considerable writing and re-writing. Each level of analysis differed in its
focus, evidence, reflective questions and language.
In brief, the first level of analysis introduced each participant, their particular experiences
and their related context. The second level involved a thematic analysis of the collective
lived experience. It resulted in the phenomenological descriptions of Being a Patient, and
of Being a Partner. The third level of analysis merged an interpretive exploration of how
the ICD is perceived, integrated and comprehended with insights from relevant
philosophical and disciplinary literature. Clinical practice recommendations emerged from
this understanding and the participants' suggestions.
66
Figure 3.1:
Progressive exploration of living with an ICD
Participant's
Being a patient,
The ICD-as
experience
Being a partner
experienced
Implications for
clinical practice
(the particular)
(the collective)
(the phenomenon)
Focus of
inquiry
Each person's
experiences of
living with ICD
Collective lived
experience: The
nature, meaning
of being a patient,
of being a partner
The Phenomenon:
The ICD as
perceived,
integrated and
embodied
Significance for
nursing, medicine;
clinical practices
Evidence
Transcripts and
findings of earlier
survey (Victorian
ICD program)
Transcripts;
related literature
Transcripts;
disciplinary and
philosophical
texts
Need to question,
inform, transform
clinical practice
Inquiry
Descriptive
processes analysis: events,
experiences,
meanings
Thematic analysis: Interpretive
analysis:
Aspects and
meanings of lived perception and
comprehension of
experience
ICD
Language
Phenomenological Phenomenological Comprehensive
understanding of
themes (linguistic and existential
living with an
transformation of language
ICD
lived experience)
of the
findings
Outcome
In terms of the
individual's
everyday
experience
Phenomenological Phenomenological
Summaries of
interpretation:
descriptions:
individual
experiences of
- The ICD as
- Being a patient
living with an ICD
Friend or as
- Being a partner
Intruder
More awareness
of complexity of
patient, partner
lived experiences
& embodiment of
the ICD
Recommend:
(1) educate staff
(2) educate,
support patients,
partners.
Future research
67
Figure 3.2:
Progression of phenomenological analysis
COMPREHENSIVE UNDERSTANDING OF LIVING WITH AN ICD
↑
P H E N O M E N O L O G I C A L I N T E R P R E T A T I O N : T H E ICD- A S - E X P E R I E N C E D
Interpretation of the perception, integration and comprehension of ICD
- insights drawn from philosophical critiques of technology
- varying the example
- existential exploration
Third level: Interpretive analysis
(related cardiac phenomena)
(corporeality, spatiality, temporality, relationality)
ICD-as-experienced (i.e., as an implanted technology)
↑
P H E N O M E N O L O G I C A L D E S C R I P T I O N : BEING A PATIENT,
BEING A PARTNER
Detailed description of collective patient, partner lived experience
- construction of themes reflective of the nature and meaning of lived experience
- identifying meaning
(significance of ICD and related events)
- identifying nature
(aspects of experience, events)
Second level: Thematic analysis:
Lived experience of being a patient, of being a partner
↑
D E S C R I P T I O N O F I N D I V I D U A L E X P E R I E N C E O F L I V I N G W I T H A N ICD
Detailed description each participant's experiences of living with an ICD
- profile of each participant's contextual background
First level of analysis:
Individual participant's ICD-related experiences
↑
Processes:
Data:
Reading, contemplation, reflection, description and interpretation
Participants' experiential descriptions of living with an ICD;
related nursing, medical and philosophical literature
3.5.2
Analysing the particular: Individual participant experiences
The first level of analysis summarised each participant's experience of living with an ICD.
This summary evolved from reviews of their experiential descriptions, related field notes
68
and demographic data from the earlier survey (Reid, McKinley & Nagy 1999). Each
summary identified events or issues ascribed significance and the meaning of living with
an ICD reported by each participant. The profiles and descriptive individual summaries
(Chapter Four) offered a beginning understanding of concrete, particular and contextual
examples of living with an ICD. This understanding provided the meaningful background
context for the additional levels of analysis.
3.5.3
Analysing the universal: Collective lived experience
The second level of reflective, thematic analysis moved the focus from individual
experiences toward a collective understanding of the everyday lived experience of patients
and partners. Following van Manen (1990, pp. 41, 56, 62, 107), reflective, intuitive
questioning contributed to written themes that described various dimensions,
characteristics and qualities of the lived experience.
Two of the three ways suggested by van Manen (1990, pp. 29, 40) for conducting a
thematic analysis were adopted in this research. Use was not made of the line-by-line
analysis to interpret the content of each line of text. Instead, the wholistic or sententious
approach that examines each text as a whole and tries to grasp its overall meaning was
adopted in the first level of analysis. Use of this approach elicited a beginning
understanding of individual experiences of living with an ICD.
The selective reading approach advocated by van Manen (1990) was used in the thematic
analysis. This slow and intense process required an open contemplative stance and
considerable concentration. In each transcript, particular phrases, sentences and passages
that referred to qualities, possibilities, meanings or the significance of living with an ICD
were marked with a highlighter pen. A brief statement summarised the highlighted
segment of text within the right hand margin of the transcript and, where possible, named
it using the participant's words. All statements from each text, together with line
references, were collated into the respective lists of 'Patients' aspects of experience,
meanings', and 'Partners' aspects of experience, meanings'.
Each list of statements identified various incidents, events, interactions, concerns,
possibilities and meanings. Next, condensing and refining the statements in each list
69
identified various aspects about the nature of living with an ICD, including related events,
issues, dimensions and situations. Identification of its meaning included the significance
and possibilities of specific events and situations, personal relationships, sense of self and
the place of the ICD in everyday existence. Further review, sorting, condensing and
organising resulted in a list of statements about the collective nature and meaning of the
lived experience of patients, and of partners. The emergent findings in these lists (see
Appendix E, 'Working documents: Progressive Findings') grounded the written lived
experience themes.
3.5.4
The writing of themes
According to van Manen (1990, pp. 79, 92), themes are linguistic descriptions of "... the
experiential structures that make up experience". Themes reflect the conceptual nature
(features, events, dimensions) of the experience and its non-cognitive meanings, qualities,
possibilities, significance and mystery. Themes cannot be reduced to an abstract notion,
word or category. He also explains that the identification of themes and disclosure of
meaning involves "... a process of insightful invention, discovery or disclosure, ... a free act
of 'seeing' meaning" (van Manen 1990, p. 79).
Themes reflective of the nature and meaning of the patient's and the partner's lived
experience required considerable clarification and re-writing. Confirmation involved a
dialogical interaction with each and every transcript to answer the question, "Would living
with an ICD be adequately described if this theme was absent from the description?".
Themes deemed not essential to living with an ICD were set aside. Periodic reviews,
together with the discovery of challenging comments, further refined the themes. These
themes structured the written descriptions of Being a Patient (Chapter 5) and of Being a
Partner (Chapter 6). Each description offers a perspective for understanding the
complexity, variant and changing ways in which living with an ICD shapes and impacts
on everyday lived experience.
70
3.5.5
Descriptive interpretation: ICD-as-experienced
The third and final level of analysis moved the focus from individual and collective lived
experience to the phenomenon of living with an ICD. Unlike much of the related medical
research, the focus was not the ICD or its efficacy and effectiveness as a technological
device. Nor did the analysis focus on the experiencing of the ICD as reflected in everyday
lived experience. Rather, the principal interest was in the ICD as perceived and understood
within the context of the body and self. Kestenbaum (1982, pp. 13-14) captures this
phenomenological shift in interest as "... not so much from the object (seeing a cat) to the
subject (seeing a cat) but rather to the object-in-experience (cat as seen)".
The primary data for this interpretive analysis were patients’ experiential descriptions
about the ICD's presence, their perception of the device, or the meaning they accord it.
This analysis reflectively explored a range of issues relating to how the ICD presented
itself to patients. Other data included ideas and insights drawn from existential
phenomenological philosophy (Merleau-Ponty 1962; van Manen 1990) and, although
limited in number, similar descriptions in the professional literature.
Issues of specific interest in this level of analysis included the ways in which the ICD as a
surgically implanted device, manifests its bodily and spatial presence and its unfamiliarity.
This exploration considered the significance of the ICD in the body and its impact on
experiential and existential possibilities. The disclosure of this significance turned the focus
toward the patient's being-in-the-world — that is, their contact, interactions and
engagement in the world. This focus explored how various relationships, activities,
concerns and discourses influenced the comprehension and sense made of the ICD. This
analysis also questioned how the patient's experience of the ICD shaped their everyday
activities. Further understanding of the ICD-as-experienced developed from insights
obtained in reviews of reported experiences of other implanted and transplanted cardiac
technology. Comparative examination of the related phenomena of living with ventricular
arrhythmias, living with a pacemaker and living with a transplanted heart introduced
helpful insights for considering how the ICD is integrated and comprehended.
A review of philosophical critiques of technology and the relationship between nursing
and technology underpinned a review of how living with the implanted biomedical
technology of the ICD impacts on and frames human existence. Finally, a review of
71
nursing, medical and media discourses on medical technology revealed various corporeal
ambiguities inherent in living with an ICD. This interpretive phenomenological analysis of
the ICD-as-experienced extended the ways of understanding the perception, immediate
experience, integration, comprehension and embodiment of the ICD.
3.5.6
The phenomenological texts
The above three layers of progressive analysis of participants' experiential descriptions
produced three written hermeneutic phenomenological texts (Chapters 5, 6, 7). The
phenomenological descriptions of 'Being a Patient' (Chapter 5) and of 'Being a Partner'
(Chapter 6) are each framed by the four themes of Being Disrupted, Reconstructing Life,
Appreciating and Celebrating Life, and Accommodating the Technology. Variations in the
content and meaning reflect inherent perspectival differences between the patient's and the
partner's collective lived experience. The patient's experience reflects specific meanings
associated with bodily awareness, vulnerability, control or choice, and perceiving the ICD.
The partner's experience is specifically framed by an embodied personal vulnerability and
perceived responsibility toward the patient and others. The interpretive phenomenological
description of 'The ICD as Experienced' (Chapter 7) reflects experiential and existential
transitions in the perception, comprehension and embodiment of the ICD over time and
with respect to different events, discourses and social influences.
There is surprisingly little scholarly advice about the place and role of using quotations
when writing a phenomenological text. Van Manen (1990, p. 79) suggests that
phenomenological writing and understanding is an interwoven "... process of insightful
invention, discovery or disclosure ... a free act of 'seeing' meaning". Given that
phenomenological research borrows experiential accounts to describe the meaning of a
given phenomenon (Sandelowski 1994b; van Manen 1990), it is appropriate to support the
description with extracts from these accounts. Each of the next four chapters includes
numerous quotations as examples or illustrations of specific events, moments, perceptions,
images, qualities, dimensions or meanings related to living with an ICD. The intent is to
support and enhance the quality of each description.
Quotations are presented in italicised font, with larger quotations forming an indented
block. Where practical, brief quotations —including illuminating words and parts of
72
sentences — are integrated and interwoven into the text of the description. Borbasi (1995)
used this interwoven literary strategy in her phenomenological description of the lifeworld
of the clinical nurse specialist. The overriding intent, as she explained, was to provide a
coherent understanding of the related lived experience:
It is, in a sense, a narrative which borrows the [participants'] words and combines
their voices not only with each other, but also with the researcher's interpretations,
in an effort to provide a coherent understanding of their lived experience (Borbasi
1995, p. 182).
Similarly, as used in the present research, this literary strategy of in-text integration of
quotations supports the plan to present a coherent reflection of "... the reality of lived
experiences" (van Manen 1990, p. 44) as it was shared and understood in conversations
with participants. An additional desire was to enhance the readability, flow and expression
of the text, to create for the reader a vicarious sense of the experience and its meaning.
Steps taken to ensure the appropriateness, accuracy and sensitive use of each quotation
included re-listening to the recorded conversations and re-reading the transcripts in full.
This process makes sure that the specific use of the quotation reflects its original context,
intonation and subtleties (Sandelowski 1994b).
3.5.7
The quality, credibility and plausibility of the inquiry
The diversity of opinion among scholars leaves unresolved the standards by which the
worth or quality of a phenomenological project can be assessed (Beck 1994; Ray 1994). Beck
(1994), for example, recommends the rigour of the project ought to aspire to Lincoln and
Guba's (1985) criteria of truth value, applicability, consistency and neutrality. These criteria
were originally designed to address the broad field of qualitative research, so do not reflect
the many qualitative research methodologies now in practice (Cohen in Beck 1994). At
present, the different recommended criteria for a phenomenological project reflect some
overlap. In keeping with van Manen (1990, 1995, 1997), the standards of quality, credibility
and plausibility framed the conduct of this research. These criteria integrate alternative
suggestions for trustworthiness, rigour and transferability of meaning (Keddy in Beck
1994; Sandelowski 1995). Future scholarly work may identify the criteria most appropriate
to the different forms of phenomenological research (Cohen in Beck 1994).
73
3.5.7.1 Quality
As interpreted here, the criterion of quality embraces concepts such as trustworthiness,
rigour, thoroughness and integrity. Several strategies enhanced the quality of this inquiry.
First, van Manen's (1990) hermeneutic phenomenology was an appropriate theoretical
framework for systematically exploring the phenomenon of living with an ICD. Second,
the research processes were congruent with the philosophical foundations of this
methodology and offered practical yet sensitive ways of addressing the research questions.
Third, the related decisions and processes of this inquiry were documented in detail.
Where appropriate, specific decisions were justified with reference to scholarly advice
found in the related professional literature. Fourth, this inquiry benefitted from the
scholarly critique that emerged in response to various presentations about the research
conduct, processes, analyses and interpretations. At different times, people present at these
presentations included academic peers, clinical nurses and medical colleagues, and
patients and partners who had not participated in this inquiry.
Finally, after careful consideration, the decision was made not to ask participants to
confirm or verify the phenomenological descriptions as valid or accurate representations of
their experience. Such a request seemed illogical in view of differences between the
researcher's and participants' goals, interests and perspectives (Ashworth 1993; Cohen, in
Beck 1994; Morse 1991; Sandelowski 1993b). In addition, the phenomenological
descriptions included aggregated and linguistically transformed data, quite different to
each participant's original account. Other researchers have reflected on the disappointment
and anxiety that occurs when participants who have been asked to verify a description
cannot recognise either their specific story or an anticipated account of their personality or
self (Ashworth 1993; Sandelowski 1993b). Consequences in the past have included
participants refuting the researcher's interpretation or conversely, giving approval in the
desire to please the researcher (Ashworth 1993).
As a matter of courtesy, participants received regular reports of the progress of the
research. Those who expressed interest also received a plain language copy of the research
outcomes.
74
3.5.7.2 Credibility
Credibility reflects the efforts made to present an accurate and authentic account of the
lived experience of the participants (Ray 1994; Sandelowski 1995; van Manen 1990).
Credibility was enhanced by the detailed description of the participants' specific
experiences, the judicious use of illustrative quotations and the inclusion in the appendices
of working documents formulated during the analysis processes.
3.5.7.3 Plausibility
The plausibility, or believability, of the phenomenological descriptions emerged in and
through careful thematic and reflective analyses of the participants' experiential accounts.
The purpose was to present detailed, aesthetic and pedagogic descriptions that, first,
disclose the nature or 'what-ness' of what it is like to live with an ICD. Second, these
descriptions seek to extend an understanding of the phenomenon's embodied ambiguities,
complexities, possibilities and meaning (Sandelowski 1995; Todres 1996; van Manen 1990).
Acquiring understanding in and through a phenomenological description requires the
reader's open engagement with the detail of the text as well as its nuances, subtleties and
meaning (Sandelowski 1995; van Manen 1990, 1997). As suggested by van Manen (1990, p.
153), this receptive engagement invites the reader to "... meet with [the phenomenon], go
through it, encounter it, suffer it, consume it and, as well, be consumed by it".
The reader is also invited to evaluate whether the descriptions demonstrate the desired
phenomenological qualities of concreteness, evocativeness, intensity and tone, and
epiphany (van Manen 1997). Concreteness is achieved if the reader recognises the
experience of living with an ICD as a familiar or, at least, a conceivable experience.
Evocativeness is achieved if the intensity, tone and vivid language gives a sense of
nearness or presence to the phenomenon. Epiphany, as used by van Manen (1997), is
captured if the reader acquires a vicarious sense and insight into the experience for the
patient or the partner. Pedagogical descriptions should, in addition, invoke a validating
75
nod of affirmation and promote the reader's reflective sense of wonder about the lived
experiences of a given phenomenon (Ray 1994; van Manen 1990; Walton & Madjar 1999).
3.5.8
Disciplinary relevance of phenomenological understanding
Chapter Eight reviews how the specific layers of meaning in the phenomenological
descriptions extend current understanding of living with an ICD within the context of
Victorian health practices. The relevance of this understanding for nurses, doctors and
others involved in the care of patients with an ICD and their partners is discussed. Chapter
Nine
reviews
the
scholarly
and
practical
significance
of
this
understanding.
Recommendations for improving clinical practice are identified and a proposal presented
for their implementation. Several suggestions for further inquiry are also identified. The
thesis concludes (Chapter 10) with a reflective review of the conduct, processes and
outcome of this inquiry.
3.6
Conclusion
This chapter explained van Manen's (1990) philosophical and practical approach to
hermeneutic phenomenology, its suitability for exploring the phenomenon of living with
an ICD and the ways in which it informed the methods undertaken in this inquiry. Each
research activity is described. Particular attention is given to the iterative data analysis
processes that progressively explore individual participant experiences, the collective lived
experience of being a patient or a partner, and the phenomenon being experienced.
Since phenomenological research is primarily a written mode of inquiry, consideration
was given to the processes used to enhance the quality, credibility and plausibility of the
descriptions presented in the next four chapters. These chapters respectively introduce the
participants and their individual experiences, describe the collective lived experience of
being a patient (Chapter 5) and a partner (Chapter 6), and interpretively describe the ICDas-experienced (Chapter 7).
76
CHAPTER FOUR
INDIVIDUAL PARTICIPANT EXPERIENCES
4.1
Introduction
The primary focus of the chapter is to briefly describe each participant's experience and
meaning of living with an ICD within their biographical, experiential and geographic
context. The chapter begins with aggregated and specific demographic data about the
research participants. A descriptive review of each person's experience provides a
beginning understanding of the complex nature and meaning inherent in individual lived
experiences. This understanding established a meaningful foundation for the later
explorations of the collective lived experience of being a patient, and of being a partner.
4.2
The participants: Biographical data
4.2.1
Patients
The patient group comprised four males and three females aged 40 to 59 years. Figure 4.1
provides aggregated demographic data and information related to their ICD and their
post-implantation experiences.
77
Figure 4.1:
Aggregated patient data (n = 7)
Gender
Males: 4
Marital status
All married
Age
40 - 69 years,
mean, 55 years
Residence
Melbourne City, Rural
4 patients
Rural
3 patients
Ventricular arrhythmia
2 patients
Cardiac arrest
5 patients
Wait for ICD
Range: 1 - 24 weeks,
mean: 12.5 weeks
Brand of ICD
'Telectronics': 3 patients
All abdominal devices
'Medtronics':
2 abdo., 2 pect. devices
Presentation
Duration of ICD
Females: 3
4 patients
Range 4 - 70 months
ICD replaced: 1 patient
Single shock
5 patients
Multiple shocks
2 patients (5 ; 12 shocks)
No shocks
1 patient
Pre-ICD
All patients
Post-ICD
4 patients (2 retired)
At interview
2 patients (5 retired)
Driving
Pre- and post-ICD
All patients
Reported QoL
Range: 3 - 8 (mean: 6.6)
(Scale: 0 = very poor;
ICD shocks
Employed
10 = excellent)
78
Details of individual patient data presented in Figure 4.2 reflect the diverse situations,
contexts and experiences that shaped individual and particular understandings of living
with an ICD.
Figure 4.2:
Individual patient data
Individual Patients
Mr A
Mr B
Mr C
Mrs D
Mrs E
Mr F
Mrs G
63
40
53
58
55
69
52
Residence
R
R
R
C
C
C
C
Presentation
VA
VA
CA
CA
CA
CA
CA
1
12
24
18
20
3
10
ICD generator site
P
A
A
A
A
P
A
LOS hospital
(days)
5
8
3
9
10
4
8
Time since ICD
implantation (months)
9
31
43
47
70
4
60
Age
(years)
Wait for ICD
(weeks)
ICD shocks
•
single
Y
N
Y
Y
Y
N
Y
•
multiple
N
Y
Y
N
N
N
N
Employment
•
pre-ICD
Y(s/e)
Y
N
Y
Y
Y(s/e)
Y
•
Post-ICD
Y(s/e)
N
N
N
Y
Y s/e)
Y
•
at interview
Y(s/e
N
N
N
N
N
Y
•
pre-ICD
Y
Y
Y
Y
Y
Y
Y
•
post-ICD
Y
Y
Y
Y
Y
Y
Y
7.5
5
3
8
8
7
8
Driving
QoL (Scale: 0-10)
Code:
Residence:
R
Presentation: CA
ICD site :
P
LOS
ICD shocks: Y
Employment: s/e
QoL:
1
(Quality of life)
=
=
=
=
=
=
=
Rural;
C =
City;
Cardiac arrest;
VA =
Ventricular arrhythmias
Pectoral;
A =
Abdominal
Post-ICD hospital stay
Yes;
N =
No
Self-employed
'poor'; 2.5 = 'fair'; 5 = 'satisfactory; 7.5 = 'good'; 10 = 'excellent'
79
The demographics, device type, ICD-related events, specific concerns and contact with
health care services of this patient group are similar to those subsequently reported by
other Australian patients (May et al. 1995; McKinley et al. 1997; Reid, McKinley & Nagy
1999). Demographic data about overseas patients derives from English, German and
American studies (e.g., Anderson & Camm 1994; Bainger & Fernsler 1995; Burke 1996;
Craney et al. 1997; Davis et al. 1996; Dougherty 1995; Dubin et al. 1995; Dunbar, Warner &
Purcell 1993; Finch et al. 1993; Kalbfleisch et al. 1989; LŸderitz et al. 1994). This body of
information indicates that overseas patients have a mean age range of 57 to 65 years,
compared to the mean age of 55 years (range 40-69 years) of patients in this research. This
information also suggests that, on average, male patients outnumber females by a ratio of
four to one.
Many of the overseas studies focus primarily on patient experiences within 12 months of
receiving an ICD. In contrast, the patient group in the present research comprised four
males and three females who had lived with an ICD for between 4 and 70 months. They
were thus able to describe how the passing of time changed their experiences and
understanding. Contrasts emerged in relation to the experience of different models of the
ICD because five patients had an abdominal ICD and two patients, more recently, received
a pectorally implanted ICD. All patients in Australia and overseas in the mid-1990s
required an ICD because they had presented with either ventricular tachycardia or cardiac
arrest. Future studies, however, may well include patients who have received a
prophylactic device.
4.2.2
Partners
The partner group comprised four females and two males, with one male partner unable to
participate. Specific biographical data were not obtained from partners. Each partner,
however, seemed close in age to their spouse. All partners were car drivers both before
and after the patient's receipt of an ICD and, with one exception (Mrs A), the primary
driver for two months afterwards. Three (Mrs C; Mr D; Mr G) of the four partners who
worked before the patient's ICD implantation, later resumed their employment. Two
couples had school age children.
80
4.3
Individual participant profiles and experiences
The following descriptions summarise each participant's experiences of living with an ICD
within the context of their everyday or lifeworld situation. Each summary required several
readings of the relevant transcripts to identify the timing of specific events and understand
their significance and related issues. As noted (Chapter 3.5.6), relevant quotations, in
italicised font, are presented either as a block paragraph, or interwoven into the
description of the text. The source of the quotation, unless obvious from the text, is
designated in brackets, such as, for example: (Mr A).
4.3.1
Mr A and Mrs A
4.3.1.1 Mr A
Aged 63, Mr A was a strongly built, intelligent and forthright man. His tough and stoic
manner reflected the hardiness needed to maintain a viable farm in a harsh, isolated
environment subject to droughts, dust storms, hot summers and salinity problems. He
angrily recalled protracted legal battles with local government agencies whose policies
added other threats to the farm's viability. He believed these battles contributed to health
problems that in the past decade included a heart attack, cancer, kidney stones, arterial
surgery and ventricular arrhythmias. Not surprisingly, he was cynical about bureaucratic
documents and thus refused to sign the consent form for this research. As he noted, he had
already expressed his consent, first to his cardiologist and second, in his telephoned
invitation to me to visit his farm to learn about his experiences. He agreed to record his
verbal consent.
In contrast to his passion when speaking about his farm, Mr A was more reserved when
discussing his arrhythmias and ICD-related experiences. More than once, having stated
that there was little to tell, he insisted on being asked specific questions. He explained it
was futile to waste time reflecting on feelings, reactions or the meaning of things, when it
could be better spent doing the many jobs needing his attention.
Mr A explained that his arrhythmia problems began a year earlier when he experienced a
little bit of dizziness while working in a distant paddock. Episodes of dizziness recurred
81
three times over the next few months. The worst episode occurred one stinking hot day
when he was in the tractor ploughing a distant paddock:
Mr A:
I felt myself go into fibrillation, got down the steps on to the ground ... walked to a
tree in the shade and lay down. I was going out to it, and ... finding it hard to
breathe.
Fortunately, his son was nearby and called an ambulance. Mr A's ventricular tachycardia
continued after his arrival at the local hospitals. Doctors quickly reverted it with a
cardioversion (a low joule shock from an external defibrillator). He returned home two
days later. After two weeks he required readmission when his antiarrhythmic medication
resulted in an abnormally slow pulse rate. He recalled a sense of feeling as though he was
hibernating. Doctors transferred him to a major Melbourne hospital for various cardiac
investigations, including an EPS.
Mr A's cardiologist recommended an ICD as the best treatment option and the planned
implantation surgery went ahead four days later. Mr A thought it was a bit bloody quick ... a
bit of a hurry for something, you know, you've never heard of. After reading a brochure on the
ICD he insisted that doctors insert a pectoral device so that it would not impede, or be
damaged, in his farming activities. He experienced little post-implantation soreness and
returned home two days later. In two weeks he had resumed most of his usual activities,
including driving.
Several months later, Mr A was pushing a heavy animal out of a muddy river bed when he
noticed a very rapid heartbeat. Recognising its significance, he had just enough time to
move away and lie down, before losing consciousness. Although he did not feel it, he
realised his ICD had delivered a shock. He quickly recovered:
Mr A:
One minute you're doing a job, the next thing you're defibrillating, and the next
you're getting off the ground as though you just laid down and had a sleep there,
and away you go. It's just unbelievable!
Mr A described his ICD as a marvellous, non-intrusive amazing piece of machinery that
allowed him to resume meaningful and productive farm activities. As with other
machinery, he expected it to be reliable and work appropriately, but realised it might be
subject to wear and tear problems. Press reports about fractured pacemaker wires affirmed
his view that the piece of wire that goes into the heart is open to fatigue and cracking.
82
Mr A described living with the ICD was a non-event and unreservedly recommended the
ICD to others with similar problems. He did not, however, believe its presence would
prevent his eventual death: I had no say at coming in, and I have no saying about going out.
4.3.1.2 Mrs A
Mrs A was, in contrast, a shy and very softly spoken person who warmly welcomed my
visit. She waited for Mr A and his staff to return to their outside chores before sitting down
to discuss her experiences. Even so, her soft voice often diminished to little more than a
whisper and was too quiet to be captured on the tape recorder. Brief notes made during
our conversation provided reminders of her comments.
Mrs A explained how marital tension caused her to leave the family home several months
before the arrhythmic onset that resulted in Mr A's need for an ICD. Feeling guilty, she
saw it as her duty to return home immediately. She stayed on the farm during his
hospitalisation and ICD implantation. Lack of contact with nursing or medical staff left her
feeling pretty much in the dark and uninformed about Mr A's arrhythmia and the ICD. After
his return home, Mr A refused to openly talk about his device, instead advising her to read
the patient information booklet. Based on its explanation she thought of the ICD as being
like a pacemaker. She found the descriptions of its shock a bit scary. Hence, she was wary
of touching his skin near the device generator in case she set something off.
Mrs A saw herself as responsible for Mr A's welfare. She was especially worried about her
poor first aid skills and the fact that it took at least 20 minutes for an ambulance to reach
the farm. For several months after his surgery, she closely watched Mr A for signs of any
problems. At night, she listened while he slept. She sometimes gave him a prod if there
were lengthy pauses between his breaths. She also worried that he worked too hard. After
months of persuasion, he finally agreed to her requests to carry his mobile telephone when
working away from the house.
Mrs A's confidence in the ICD increased with time and the knowledge of its role in treating
collapse after shifting stock. Mrs A saw the ICD as a marvellous thing that eased her
responsibility. Regardless, she noted that her geographical isolation made it hard to find
others who were familiar with living with an ICD. She warmly acknowledged being able
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to share her story and asked many questions. She also expressed surprise to learn there
were more than 100 other Victorian patients with an ICD.
4.3.2
Mr B and Mrs B
4.3.2.1 Mr B
Mr B, aged 40, lived with his wife and three young children on a rural farmlet,
approximately 20 minutes away from a small rural town. Congenital cardiac problems
resulted in episodic bouts of ventricular tachycardia over the past decade. The lightheadedness of each bout usually passed within a couple of minutes and he would resume
light activities. Often it took an hour for the arrhythmia to settle spontaneously. When it
persisted he drove to the local hospital, had a cardioversion and, after a brief rest, drove
home again. With time, the effectiveness of his antiarrhythmic medication reduced and he
experienced increasingly frequent arrhythmic bouts. His cardiologist offered the ICD as an
alternative to the risk of harmful liver and lung side-effects from increased medication
dosages. Mr B was hospitalised seven weeks before his ICD implantation to treat an
infection and also to monitor his heart's response to altered medications. Neither he nor his
wife knew anything about the ICD. Nursing staff likened it to a special pacemaker that
could deliver a shock. There was no opportunity to meet another recipient.
Implantation of his abdominal ICD took several hours and resulted in painful abdominal
and chest wounds and the need for further surgery a day later to treat a small
haemorrhage. Prior to his discharge home seven days later, staff provided the
manufacturer's information booklet but offered no advice about diet, exercise or driving.
Over the next few weeks his wound soreness and tiredness gradually subsided. After a
couple of months he resumed his previous activities, with the exception of taking an early
retirement package from his job. His workplace was located near high-frequency power
sources that could affect the ICD's functions. Other reasons included his poor general
health, namely his susceptibility to viral infections, and symptoms associated with his
heart failure. Having secured the family's financial situation, he kept busy assisting in the
care of his young children and the many chores on their farmlet.
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Five months after his return home, Mr B received the first of several ICD shocks when
driving the family car and while stationary at traffic lights.
Three successive shocks
caused him to scream with pain. He and Mrs B swapped seats before she drove him to the
local hospital. The emergency department staff knew little about the ICD and waited for
telephoned advice from the Melbourne-based cardiologist. Meanwhile, Mr B experienced
several more shocks, each more painful than the previous shock. He and his wife believed
he was dying, with neither aware of the ICD's capacity to deliver more than one shock.
Eventually, Mr B's arrhythmia slowed and the shocks ceased after doctors administered
sedation, pain relief and intravenous antiarrhythmic medication. Doctors reprogrammed
the ICD's sensitivity level and discharged Mr B home. There was no immediate or followup counselling.
The physical and emotional distress of the multiple shocks destroyed Mr B's confidence in
the ICD and left him dreading future shocks. His associated anxiety contributed to severe
panic attacks and depression that took two years to ease in intensity and frequency. He
described how the combined sense of powerlessness, loss of control and reduced quality of
life brought the desire for doctors to remove the ICD. Doubting they would understand or
agree, he saw a future heart transplant as the only means of some relief. Based on his
experience, he refused to recommend the ICD to others.
4.3.2.2 Mrs B
Mrs B openly and warmly discussed her difficult dual responsibilities of supporting Mr B
through his many health problems while simultaneously caring for their young children.
For example, hospital visits during his pre- and post-ICD implantation period involved a
round trip of several hours. Each visit had to be arranged around the children's care and
other household commitments.
Mrs B didn't really understand about [the] zapping part of the ICD. She found it easier to
simply explain it to their children as something that would reduce their father's need for as
many tablets; they seemed more intrigued by his many scars. Mrs B's hope that the ICD's
promised protection would restore a sense of stability for the family was not realised. In
addition to his multiple shocks, she noted that for nearly 12 months solid there was almost
always something wrong with him. She recalled it as a debilitating time, because you can't see a
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light at the end of the tunnel. She supplemented his diet with vitamin C capsules, believing
that his potent medications depleted his immune system. She also determined not to let
him sit there and mope and feel sorry for himself.
Noting his protracted recovery and recurrent viral illnesses she reflected how it's not just
the patient that's going through it, it's the family as well. ... As a spouse, you have to work through
it as well. Her related efforts included enrolling in a counselling course where she learned
various motivational, relaxation and diversional strategies and techniques for providing
emotional support. Use of these strategies eased the severity of Mr B's anxiety, panic
attacks and depression. It still took more than a year for his confidence to return enough to
again participate in family activities.
Despite Mr B's problems, Mrs B valued the ICD because she believed it protected him from
the risk of sudden death, and thus also protected her and the children. As yet, her desire to
talk to somebody who knows what you are going through remains unfulfilled. This desire
became even more significant when Mr B expressed his wish to be rid of the ICD. Despite
her misgivings about his decision, she understood his perspective and agreed that its
removal might improve his quality of life. Neither of them had discussed his decision with
doctors, nurses or counsellors.
4.3.3
Mr C and Mrs C
4.3.3.1 Mr C
Mr C, aged 53 was a quietly spoken and reserved man who lived with his wife and teenage
daughter on the outskirts of a small town. It was a place where you have time to stop and
think who you are and where you're at (Mrs C). Local community members were like an
extended family because they quickly rallied with practical help during a crisis.
Fifteen years earlier, Mr C had coronary artery bypass surgery and, after suffering a heart
attack a year later, sold his farm. Having been a hard worker, boredom soon set in and he
and Mrs C just about drove each other mad (Mrs C). A few months later they bought a sheep
farm for him to manage and visit once or twice a week.
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Four years ago, Mr C suffered a cardiac arrest and collapsed in the town's main street.
Bystanders initiated his resuscitation. Within a few hours of his admission to the local
hospital doctors transferred him to the intensive care unit of a Melbourne hospital where
he remained unconscious for three days. Subsequent cardiac investigations confirmed his
need for an ICD, with its insertion planned for a later date. The complication of a small
stroke delayed his return home and the insertion of an ICD. Months later he received his
first ICD, only to have it removed within a few hours because it failed to work. He again
returned home to await a more powerful device and recover from a wound infection
resulting from the failed surgery.
Five months after his cardiac arrest Mr C received an abdominal device. Initial wound
soreness soon subsided and he had an otherwise uneventful recovery. The only other
problems were abdominal discomfort when he sat for a long period or leaned over a hard
object. He believed that compression of the ICD generator against internal organs
contributed to these discomforts because his symptoms abated when he changed position.
Within a few months of receiving his ICD Mr C had resumed most of his usually light
physical activities. Time passing without major problems contributed to a growing sense of
complacency and the ability to ignore minor symptoms. His cardiac failure prevented paid
employment. Noting that life is too short, he recalled how he kept busy: you've just got to get
on with it, you know. In addition to household and farm chores, he did volunteer work for
the local school and community. He eased his family's concerns by keeping them informed
by mobile telephone of his location or unexpected delays in returning home.
Mr C stopped using electrical tools after twice receiving a single ICD shock when using a
different electric drill. Even though neither drill had any fault, he believed the associated
vibrations interfered with the ICD's functions. On two other occasions he was in a public
place when he suddenly lost consciousness before receiving several shocks. Despite his
prompt recovery, news of these collapses quickly reverberated through the town (Mrs C) and
friends no longer sought his help with various local events. Keen to rectify this situation he
and his wife used various public speaking opportunities to explain the ICD's functions and
effectiveness and ease the community's concern. Mrs C also offered first-aid advice for
people worried about being present during any future collapse. The return of invitations
for his help signified their success in increasing the confidence of others in their
community.
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Being able to drive was central to Mr C's busy life, but he remained concerned that his
arrhythmias risked his and other people's safety. He convinced his cardiologist to
reprogram the ICD to deliver an earlier shock and thus reduce the likelihood of impaired
consciousness. Although Mr C acted as a courier in transporting food and sports
equipment for the school, he no longer carried passengers when driving.
For Mr C, living with an ICD meant having the protection needed to continue a
meaningful, productive and rewarding life. He especially valued the ICD for giving him
four extra years to share in their daughter's development. He readily recommended it to
others.
4.3.3.2 Mrs C
For Mrs C, being a partner meant being responsible for her husband's welfare, especially
before and in the early period after ICD implantation. Her anxiety was compounded by
not knowing the signs or symptoms of an arrhythmia or device related problem. Their
local doctors, who upgraded their knowledge about the ICD, became a valued source of
support and information. These doctors readily answered Mrs C's questions and provided
emotional support:
Mrs C:
You can go down and have a cry with them, and I've done that, off load, and say
"Look, I'm frightened, I'm just scared stiff".
Time also taught Mrs C to avoid getting too drawn in by the seriousness of Mr C's situation.
She learnt to distance herself. Keeping busy helped to avoid focusing on the ICD's
presence: you have to live with it, so you do. Although her work as a teacher relieved much of
her tension, it sometimes contributed to a sense of divided loyalty. If Mr C looked unwell
she had to choose between staying home or going to work, but staying at home both
revealed her depth of concern to Mr C and left her feeling guilty about not fulfilling her
teaching obligations. Additional guilt occurred if Mr C misinterpreted her distancing or
silence as a lack of sympathy. She learned to hide her frustrations and anxieties:
Mrs C:
You have your moments, but you try not to let him see how it affects you or upsets
you.
Frustrations sometimes however contributed to heated arguments between Mr C and their
daughter (Ms C), with Mrs C often had to intervene as a peacemaker.
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For Mrs C, the ICD was a reassuring and protective insurance policy, a back-up, even when
the doctors aren't there. Ms C also noted how the ICD's presence eased her concerns about
her father's health problems.
4.3.4
Mrs D and Mr D
4.3.4.1 Mrs D
Mrs D, aged 58, worked part-time and lived with her retired husband in an outer
Melbourne suburb. Numerous photographs of her children and grandchildren reflected
social occasions with her large family.
Eight years ago Mrs D developed atrial fibrillation (AF) and for four years attended
numerous doctors. Despite being treated with a range of cardiac medications, she required
intermittent cardioversions when she developed bouts of very rapid arrhythmias. Four
years ago she again thought her doctor had given up on her and put the treatment of her
AF in the too hard basket because he ceased all her medications.
Three weeks after stopping her medications she was in the kitchen when without warning
she suffered a cardiac arrest. Mr D was outside at the time, but investigated the noise
associated with her fall. Finding her unconscious, he started cardiopulmonary
resuscitation and telephoned for emergency help. Mrs D regained consciousness soon after
ambulance personnel used a single external defibrillator shock. Her condition stabilised
after her transfer to the intensive care unit of an inner Melbourne hospital, but she recalled
little of the next 24 to 36 hours. Mr D remembered her repeated questions about the
collapse. Doctors recommenced her antiarrhythmic medication and she returned home a
week later. Within three weeks she had resumed her housework chores.
As recommended by doctors, Mrs D had an EPS one month after her collapse. The results
revealed her continued susceptibility to ventricular arrhythmias. Despite two more drug
trials and an EPS at monthly intervals her arrhythmia vulnerability persisted. Doctors
scheduled a recommended ICD implantation six weeks after the last EPS. During these
three months Mrs D also experienced considerable lethargy, cardiac failure symptoms and
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numerous medication side-effects, including an epistaxis requiring hospital treatment. At
times, as she recalled, she felt so bad that she thought she was going to die. By the fourth
month she had improved enough to resume her part-time job. Even so, this was a time of
considerable insecurity because it was the first time she had been away from her husband,
who she described as being her bodyguard. Despite her sense of insecurity she also had to
reassure her apprehensive colleagues.
Four and a half months after her arrest Mrs D received her ICD. Having been told it would
be a little device, she nearly flipped when she felt its large size in her abdomen. Her postoperative period went well: no problems, no infection, no nothing, a good recovery (Mr D).
However, two days prior to her discharge her heart rate briefly exceeded the pre-set alarm:
I was shocked! It was shocking! ... It was like being booted really hard. It left her sore for the next
few hours. Pre-discharge advice from nurses explained the need to avoid being near big
power poles and arc-welding equipment because of possible interference with the ICD's
functions. There was no information about exercise, daily activities, driving or diet.
Her wound soreness and tiredness abated after the first week at home and she gradually
increased her activities. By the end of the first month she walked the length of the town's
main street.
Mrs D's second shock occurred several months later, one day before the scheduled
insertion of a permanent pacemaker to control her atrial fibrillation. Again, doctors had
ceased her medications three weeks earlier. She lost consciousness while showering and
awoke on the bathroom floor, but except for sore knees, felt well. Checks of her ICD the
next day revealed she had suffered another episode of ventricular fibrillation that was
reverted by a single shock.
Having initially expected that her life would just be sort of existing, Mrs D reflected that,
four years later, the ICD's presence promoted a fairly good appetite for life. There had been
no more shocks. The only reminder of its presence was some left sided abdominal soreness
after heavy housework. Mrs D likened the ICD to a protective friend that offered security —
a bit like a [baby's] dummy. She especially valued how it secured extra time to enjoy her
grandchildren and to travel. She recommended it to other patients.
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4.3.4.2 Mr D
Mr D was a reserved man whose main contribution to our conversation was to provide a
vivid description of being involved in Mrs D's resuscitation. He recalled that soon after her
transfer to hospital he started wondering if she might have sustained some brain damage.
These doubts tempered the initial exhilaration he felt at saving her life.
His comments seldom mentioned being concerned for Mrs D's welfare in the initial weeks
after her arrest. It was nonetheless obvious in how he continually remained in her presence
until she returned to work. He also recalled how, during the pre-ICD period, her
prescribed medications were badly out of balance. As a result of having her ICD, her need for
as many medications was reduced, something he appreciated:
Mr D:
If you know that ... chemically your life is a wreck without that protection, and
good with it, there's no comparison between the two [antiarrhythmic drugs and the
ICD]. These times the drugs are adjusted, and minimised. The most poisonous ones
are stopped.
For Mr D, the ICD's protection provided them with the positive confidence and authority to
get on with your life.
4.3.5
Mrs E
Mrs E was a 55 year old health professional who lived with her husband and adult son in
an outer Melbourne suburb. Their home was at the top of a hill that overlooked a thick
native forest.
Almost six years ago Mrs E became ill with what she thought was a severe viral illness.
Two days later she was admitted to the coronary care unit of the local hospital with an
acute myocardial infarction that was complicated by several cardiac arrests. On one
occasion she regained consciousness to find her hand held tight by a girlfriend and
thought: She thinks I'm going to leave her. She's trying to hang on and keep me there. Two weeks
later, and a few days prior to her discharge, her husband arrived home from an overseas
business trip.
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Mrs E rested during her first few days at home. Mr E, their adult children and her sister
managed the meals, housework and visitor inquiries. During her second week at home
Mrs E felt more confident. Even though she convinced her family to resume their usual
activities and jobs her first day alone was an anxious and vulnerable time. She kept busy
with some light exercises, such as walking laps of the passages inside the house. She
increased the number of laps each day, but the awful drained feeling associated with her
hypotension left her too weak to walk the steep garden paths and road.
A month later Mrs E underwent the cardiac investigations of an angiogram and EPS. She
absolutely loathed the EPS, describing it as barbaric. These investigations confirmed her need
for corrective cardiac surgery as well as an ICD, of which she had no knowledge despite
her professional background. Use of the ICD in the early 1990s was rare in Victoria and
Mrs E had no opportunity to meet another patient. Doctors refuted her concern about
being used as an experiment. They warned she may die within 18 months without the ICD.
Mrs E recalled the pre-implantation wait of five months from the time of her arrests as an
awful time of being afraid. Implantation of the ICD occurred at the same time as her other
cardiac surgery. Although she experienced considerable discomforts from her chest and
abdominal wounds and the ICD generator site, her recovery was otherwise uneventful.
Staff explained how the ICD's patches (the defibrillating component of early ICDs) would
give her a zap in the event of further arrhythmias. Other explanations concerned how to
protect the ICD, warnings against heavy lifting and not driving until her wounds healed.
Mrs E returned home 10 days after surgery. She noted how her husband drove like a snail,
but the long bumpy pot-holey road home still exacerbated her wound discomfort and she felt
a sensation in which she thought the generator moved within its surgically created
muscular pocket. After being molly-coddled in hospital, she felt insecure:
Mrs E:
It was a nerve-wracking business, because you've been molly-coddled ... and you've
got ... a machine in you that's going to do something.
Despite the presence of ongoing vague physical symptoms — later attributed to the onset
of menopause — Mrs E's confidence and morale gradually increased in keeping with her
resumption of everyday activities. She again took long walks with friends in the bushland
and hills around her home. She also started driving her car again, albeit with a passenger
for company for the first week.
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Within a few months Mrs E was as busy as ever. Having resigned her previous job soon
after her heart attack, she successfully applied for an office based position but avoided any
mention of the ICD or cardiac history. After approximately 12 months she felt life had
regained a sense of normality, but six months later, eighteen months after her heart attack,
she received her first and only ICD shock. Without warning she experienced a big jolt that
was over in an instant and not associated with pain, loss of consciousness or after-effects.
Afterwards, she felt relieved because the shock reassuringly confirmed the ICD's
reliability: I'm really glad it works because I'm still here!
Three years after her original surgery doctors replaced her ICD when the battery of her
original device prematurely depleted its energy reserves. Her cardiologist's reassuring
explanation and thorough checks of her ICD leads during the replacement procedure,
overcame any related concerns.
For Mrs E, the meaning of living with an ICD changed with time. The initial meaning and
focus related to living with a machine in her body:
Mrs E:
It was sort of pretty mind-blowing ... to think that you've got this big thing in your
body that's got leads and stuff. ... It was fascinating ... all very interesting if you're
not the patient. ... It was a whole learning process.
With time, she accepted that what will be, will be and, to her surprise, no longer thought
about the ICD each day. She now accepted the ICD as part of her, a trusted friend that kept
her going despite any arrhythmias. She recommended it to others with arrhythmia
problems.
Although Mr E was unable to participate, Mrs E reflected on his experiences. She noted
how he seldom discussed his anxiety during the pre-ICD waiting period. Often, however,
she awoke to find him checking her breathing, but she recalled how he learned to let go
after her surgery and ICD implantation. At her request, he returned to work two weeks
after her return home. He also supported and encouraged her driving, travel and return to
work. The only time she saw him really panic was his alarm when she detected the original
ICD as being faulty.
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4.3.6
Mr F and Mrs F
4.3.6.1 Mr F
Aged 69 and now retired, Mr F lived with his wife in a forested outer Melbourne suburb.
His health problems began with a heart attack at age 48, but he made a good recovery. Five
years ago he developed hypertension and cardiac failure which, over the past two years,
contributed to episodic bouts of fluid on the lungs. He described these usually late night
bouts presenting as breathlessness, feeling restless, a gurgling in the throat and severe enough
to need urgent treatment at the local hospital. On one occasion doctors noted that he had
brief bursts of a ventricular arrhythmia, but no treatment was prescribed.
Just over a year ago, Mr F suffered another severe episode of breathlessness and gurgling.
Within minutes of reaching the emergency department he suffered a cardiac arrest. His
wife witnessed his arrest and the staff's prompt resuscitation efforts. Soon afterwards, Mr F
regained consciousness and was transferred to the intensive care unit of a major
Melbourne hospital. Surrounded by monitoring equipment in his room, Mr F realised that
something else could happen. Doctors stabilised his heart rhythm with medication and over
the next few days, performed a coronary angiogram and an EPS. The results of these tests
convinced doctors that an ICD was the only [treatment] option available.
Neither Mr F nor Mrs F had previously heard of this device and recalled their sense of
feeling overwhelmed by the amount of new information about arrhythmias and the ICD.
White board diagrams made it easier to understand the ICD's role in treating arrhythmias.
Although they readily accepted one cardiologist's explanations of the ICD as a sort of
monitor to be placed in the abdomen, they were disturbed to learn it was about the size of a
small book (Mr F), or a video (Mrs F). They were relieved when the implanting cardiologist
later explained that Mr F would receive a smaller and newer pectoral ICD.
Three weeks after his admission, Mr F received his ICD. He was surprised that there was
very little postoperative discomfort. Four days later he returned home, an event Mrs F
celebrated by taking several photographs. The nausea present in the first few days
dissipated when Mr F re-arranged his medication times, but his fatigue took longer to
resolve. Having received conflicting advice about the amount or type of recovery exercises,
Mr F determined to increase his activities each day. His exercise plan included regular
94
increases in the distance of his walks. He derived a great sense of achievement when, after
the first month, he could walk a quarter of a mile up very hilly roads without any adverse
physical effects. His returning confidence encouraged him to occasionally tackle more
strenuous activities and resume his creative hobbies. Although he was keen to resume
driving, his various doctors provided conflicting advice, ranging from never driving again
to waiting three to six months. After three months he again felt safe and confident and
resumed his driving.
By the end of the fourth month Mr F felt his normal self again. The only routine thing that
was missing was an evening glass of sherry, but the cardiologist had warned him to keep off
the grog because it was such a shock to the heart. On rare occasions he still had a little
celebratory drink, but sipped it very slowly ever alert for any jerks and bumps that might
indicate a shock to the heart. This caution eased after he visited a local winery with a
friend. Having sampled several selections, he felt better than [he] had for weeks. Soon after,
he again regularly enjoyed an evening sherry.
Mr F recommended the ICD to others. For him, it was understood as a necessary body
modification that, like spectacles or other prostheses, supported an impaired body function.
He was mostly unaware of its presence, noting how it had become part of [his] anatomical
system, something quite natural [that] did a good job. He added: I feel reassured that I've got a
friend there, you know. He had not yet been shocked but, accepting that things could
suddenly change, held a view of the future that was neither too optimistic nor pessimistic.
Plans for the next two years included household renovations and an overseas holiday.
4.3.6.2 Mrs F
Mrs F saw it as her responsibility to ensure Mr F got better and did not give in, especially in
the early weeks after his cardiac arrest and subsequent receipt of an ICD. Being responsible
meant being informed about his arrhythmias, ICD and medications. In addition to sitting
through explanations from different doctors and reading the patient information booklet,
she asked questions of nurses who she thought were knowledgeable. She achieved some sort
of middle ground of information.
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Being responsible also meant supporting Mr F while trying to cope with her own stress.
While she encouraged his resumption of various activities and his need to take as much
rest as possible, she also accepted his felt need to take the occasional risk. She recalled
initially presenting an image to family and friends of coping and having it all together and
thus refusing their offers of help. After realising that you can get very, very tired, where
mentally and physically you don't feel you're coping well she learned to more readily accept
their offers and encouragement. She reflected how this support picks you up, nurtures inner
strength and makes it easier to move forward.
Part of Mrs F's responsibility also involved explaining the ICD to family and friends.
Although accepting it was like a special type of pacemaker many were more interested in
the dramatic aspects of Mr F's surgery. Some asked if he had joined the Zipper Club (had
open-heart surgery) by having his arteries renewed (coronary artery bypass surgery). Others
wondered if he had a new heart (a heart transplant) or a heart pump (a cardiac-assist device).
Mrs F observed that unlike the ICD, these technologies were often featured in the media.
Mr and Mrs F noted how his illness prompted the desire to get their financial and personal
affairs in order. Once done, they became increasingly busy with everyday activities. Both
Mr F and Mrs F valued how the ICD's presence and security provided the positive attitude
needed to move forward and make meaningful plans. To her surprise, Mrs F even
sometimes forgot about his ICD. She was, however, quickly reminded of his vulnerability
whenever he looked pale, tired or unwell.
4.3.7
Mrs G and Mr G
4.3.7.1 Mrs G
Mrs G, aged 55, lived with her husband in an inner Melbourne suburb. Despite long
standing respiratory problems, she maintained a busy professional career. Five years ago,
she experienced atrial fibrillation interspersed with ventricular arrhythmias. After being
hospitalised for a few days she was discharged, without antiarrhythmic medication or an
appointment for specialist review. When her symptoms recurred a few days later she
visited her local doctor who, she recalled, laughed [and said] ... "Oh, you just had some
tachycardia. Everyone has that". Dissatisfied, she visited another doctor who arranged a
96
cardiology review a fortnight later. The day before her scheduled appointment, she
suffered a cardiac arrest in the garden of her home. Describing it as a fluke to find her so
quickly, Mr G quickly transported her by car to a nearby hospital.
Following her resuscitation Mrs G required a prolonged stay in intensive care. In addition
to weeks of being unconscious, she suffered multiple complications that included two
more cardiac arrests, multiple organ failure and the need for renal dialysis and artificial
ventilation. Upon regaining consciousness she recalled being aware of a severe generalised
muscle weakness and initially thought it was a quadriplegia. She also recalled some very
scary moments of being so defenceless without the ventilator, such as when nurses changed her
tracheostomy tube. She vividly recollected her sense of wanting to die, but experiencing the
incredible feeling of being pulled in half when her daughter desperately appealed to her to get
better.
Ten weeks after her arrest Mrs G was transferred to another hospital where she had an
EPS, a procedure she described as an awful and horrible experience. Despite several
misgivings, she yielded to her family's desperate pleas and reluctantly agreed to an
immediate implantation of an ICD. She recalled the frustration and anger at being pressured
to accept the ICD when she knew very little about the device:
Mrs G:
[You feel] you've been very much a nuisance in a sense for all those weeks, so the
least you can do is to comply with what appears to be a way to prevent it happening
again. ... Can you imagine signing an informed consent for something you knew
nothing about? It was a joke, and yet you're cornered.
Other unresolved concerns related to the dislike of having something artificial inside her
body and the belief that so much money should not be spent on one person, despite being
assured the ICD offered the most cost-effective protection. In addition, she had already
survived a serious illness many years earlier and had made her peace. Drawing upon her
strong faith, she believed death was a welcomed spiritual transition and not something to
be feared. Perhaps this is most evident in the rejection she felt after being resuscitated:
Mrs G:
I was very, very distressed that I wasn't wanted up there yet.
SR:
That the good Lord wasn't ready for you, yet?
Mrs G:
Well, He wasn't, and I just felt the door didn't open for me. I got to it, and I parked
outside it, but I couldn't get in!
Severe postoperative pain marked the last week of her hospitalisation. Upon her
discharge, doctors recommended a gradual resumption of activities, with the exception of
using a vacuum cleaner or driving a car.
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Mrs G's initial recovery was slow. Problems with weakened leg muscles, wound pain,
tiredness and laboured breathing gradually subsided over the next two months. She
remained troubled by nausea, abdominal fullness and other troublesome but vague
symptoms. Nevertheless, she resolved to take responsibility for her recovery but found it
difficult to obtain enough information. Her local doctor lacked sufficient knowledge to
answer her questions. Her 'box' doctor — the implanting cardiologist — was the expert on
ICDs. However, he saw himself as the technician in this relationship and refused to answer
her questions. Another cardiologist involved in her care could answer few questions about
the ICD, aside from advising her to expect to be shocked two to three times each year and
a general deterioration in her health over the next three years. She found these predictions
confirmed in various medical articles about other patients' outcomes with the ICD. Because
of her concerns and these predictions, she disliked being left on her own: you sit like a cat on
a hot tin roof, expecting the thing [ICD] to go off.
Three months after her return home, Mrs G returned to her stressful job, believing that
with her prognosis she had to stick it out until the time when she would need an invalid
pension. In addition to benefits to her financial position and self-esteem, work offered her
the chance to fulfil the felt need to give something back and thus re-pay people for their level of
commitment and care during her illness.
After approximately 21 months, Mrs G's vague symptoms eventually abated. By this time,
doctors had finally diagnosed them as menopausal in origin but refused to prescribe
hormone replacement therapy because of her cardiac problems. Life gradually became less
of a physical struggle and was again seen as worthwhile and she was kept busy with her
full time academic career, postgraduate study and international travel. Three years after
receiving her ICD Mrs G experienced her only shock, which was not nearly as bad as she
had expected. Similar to her earlier collapse, she was again tired, stressed and felt run
down. Reflecting that she had already outlived her predicted prognosis, the shock
prompted her decision to adopt a more relaxing lifestyle, including a less stressful job.
Although Mrs G readily acknowledged the value of the ICD in reassuring her family, more
than ever she resented its presence. Aside from how the box left her feeling programmed and
very uncomfortable, her worsening lung problems increased her desire for a quick,
unencumbered death. In her view the ICD would prevent fulfilment of this desire. She
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dreaded the possibility that its repetitive, hideous shocks would intervene when she was
dying:
Mrs G:
I have absolutely no fear of dying. .... I have plenty of fear about the way I die, now,
that I didn't have before, but I have no fear actually of being dead.
Her view of the ICD, together with her deteriorating health, convinced Mrs G to refuse a
replacement ICD when the current generator battery reserves are depleted. Her husband
opposed her decision. Although she had yet to discuss her decision with her cardiologist,
she expected a similarly negative response.
4.3.7.2 Mr G
Mr G appeared slightly older than Mrs G. He openly discussed his vivid recollections of
the distress of finding her in a cardiac arrest and the staff's frantic resuscitation efforts over
45 minutes. He followed as they transferred her to the intensive care unit. She seemed to
be unconscious but he believed she was aware of his presence. Over the next three months
he took extended leave from his job so that he could spend several hours each day at her
bedside. He often helped nurses as they cared for Mrs G. This was a difficult time. The
family's vulnerability and felt confusion culminated with vigorous debates over treatment
options:
Mr G:
People were wanting to do something and somebody else was wanting to do
something else. It was a hell of an emotional time for everybody.
Mr G's siblings were overseas at the time and he missed having a shoulder to cry on.
Cultural differences prevented him accepting support from in-laws, but discussions with
an ex-priest friend provided some solace.
After Mrs G's return home, Mr G helped with her physical care, household chores and
transport to various health care appointments. Whenever they were any distance from
home he used a map to learn the location of the nearest hospital, just in case there was a
problem. Mr G also became worried about Mrs G's return to work. Believing she was too
blas? about her ICD and its functions, he reminded her of the need to avoid the ultrasound
and short-wave equipment in her workplace.
Even years later, Mr G's vivid nightmares about Mrs G's cardiac arrest meant that his
dread of a recurrence is always there:
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Mr G:
Of course, you're on tenterhooks the whole time. I'm still not relaxed. Although
you come to terms with it, and perhaps you come to live with it, you can't forget it,
you can't pretend that it doesn't exist. You might try to push it to the back of your
mind, but it doesn't go all the way back. You know, it's there, lurking. It is not
very easy to forget. I think it is the worst experience I ever had in my life.
This vulnerability came to the fore when he witnessed her being shocked. Having seen her
become ashen and give a bit of a jump with the shock, he stood there, holding [his] breath,
waiting. To his relief, she quickly regained her composure. Her quick recovery affirmed his
view of her ICD as a remedial thing, a lifesaver. He explained how its protection of her eased
his sense of responsibility and worry:
Mr G:
It's going to do the job that otherwise I would have to do again, and I don't want to
go through it again.
Her refusal of a future ICD replacement implicitly brought with it the fear of having to go
through it again and from his perspective was an incomprehensible act of euthanasia, where
you switch off life support.
4.4
Summative comments
This chapter introduced each patient and partner and provided a descriptive summary of
their experiences of living with an ICD. These summaries reveal how biographical,
experiential, geographical and social situations shaped and were shaped by these
experiences. Implantation of an ICD affected physical and emotional well-being,
information needs, social relationships, experience of home, work activities and personal
aspirations. For patients, such everyday situations also framed the meaning accorded the
ICD. These summaries reveal how living with an ICD is a complex phenomenon that
manifests itself in diverse physical ways and with significant meanings for individual
existence, possibilities and relationships with others. The beginning understanding
derived from these concrete, particular examples provides a contextualised background for
exploring and describing the collective lived experience of being a patient and of being a
partner.
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CHAPTER FIVE
BEING A PATIENT
5.1
Introduction
This chapter presents a description of the collective lived experience of being a patient
through a reflective and thematic analysis of patient data. The description explicates the
nature and meaning of the patient's experience. The chapter is structured around the
specific themes that constituted this lived experience. These themes included Being
Disrupted, Reconstructing Life, Appreciating and Celebrating Life and Accommodating the
Technology.
The first theme, Being Disrupted, attests to the disruption wrought by life-threatening
arrhythmias. It speaks of the isolation, endurance and resoluteness of surviving these
arrhythmias, being hospitalised and waiting for the ICD. The second theme,
Reconstructing Life, addresses the experience of ICD implantation, the struggle to make
sense of its presence and significance, to resume everyday activities and fulfil various
responsibilities. The third theme, Appreciating and Celebrating Life, is more future
oriented. It reflects a philosophical acceptance of the situation, efforts to resolve everyday
issues and decisions to move forward in meaningful ways. The final theme,
Accommodating the Technology, describes the ICD's integration, comprehension and
place in the patient's life. Four meanings permeated each theme, namely bodily awareness,
vulnerability, control and choices, and perceiving the ICD. Each of these meanings reflect
issues related to life, death, self, possibilities and concern for others.
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5.2
Being disrupted
THEME:
Being disrupted
'Being Disrupted' denotes the occurrence, with little or no warning, of an episode
of life-threatening cardiac arrhythmias. It reflects the individual's loss of control
over their heart and being and their transformation into being a patient. Invasive
medical procedures further expose their vulnerability. Fears, doubts and isolation
mark the struggle to survive. The offered ICD brings hope for a restored sense of
security and normality. Despite the anxiety of protracted waiting, the patient
prepares the body and self to receive the ICD. Fortitude, determination and
resoluteness sustain hope.
Each patient's experience of living with an ICD originated in their survival from lifethreatening arrhythmias, admission to a critical care unit and results of cardiac
investigations. Having been diagnosed as needing an ICD, patients confront an anxious
wait until implantation. Being Disrupted reflects their lived experience of an existence
interrupted by cardiac arrhythmias and waiting in suspense.
5.2.1
Surviving ventricular arrhythmias
Two patients (Mr A; Mr B) remained conscious during their episodic periods of ventricular
tachycardia. One patient (Mr A) experienced brief episodes of shortness of breath and
severe palpitations in the months before the onset of a sustained bout of ventricular
tachycardia. His readmission two weeks after his discharge culminated in his transfer to a
Melbourne hospital and ICD implantation a week later.
The other patient (Mr B) experienced episodic ventricular tachycardia for many years so
knew how to recognise and minimise its effects:
Mr B:
I can feel when it is coming on. Your blood pressure drops. ... You get very lightheaded, ... your chest is starting to thump a bit. And you say, "oh, yeah, VT", and
you're basically shaking your head keeping yourself awake. Then, once it's in VT,
you carry on as per normal.
He only sought medical help if his arrhythmia persisted for more than an hour. Seeking
this help involved driving to his local hospital, being cardioverted and later driving home
again.
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Each of the other five patients (Mr C; Mrs D; Mrs E; Mr F; Mrs G) suffered an arrhythmic
related cardiac arrest. Two patients (Mrs E; Mr F) were in hospital at the time, but the other
arrests occurred at home (Mrs D; Mrs G) or on in the street of a local town (Mr C). Patients
who survived a cardiac arrest were admitted to a critical care unit. Being surrounded by
cardiac monitors and other unfamiliar medical technology reinforced the patient's
awareness of the seriousness of their situation (Mr F).
Patients were also confronted with the unfamiliar language of cardiology. As evident in
our conversations, they soon learned and appropriately used various medical terms.
Frequently mentioned terms included heart failure, sinus rhythm, ectopic beats,
tachycardia, AF (atrial fibrillation), VT (ventricular tachycardia), fibrillation and VF
(ventricular fibrillation).
Within weeks of surviving their arrhythmic event most patients endured various
investigative medical procedures. The most remembered were the coronary angiogram
and the EPS. One patient's (Mr F) fears about his angiogram reflected the fact that a close
friend suffered a debilitating stroke during this procedure. Such fears, together with a
perceived loss of control and the sense of living on borrowed time, are common with a
coronary angiogram (Beckerman, Grossman & Marquez 1995).
5.2.2
Experiencing the electrophysiological study
The EPS is a complex but now relatively routine diagnostic procedure undertaken by an
electrophysiologist (specifically trained cardiologist) in a cardiac catheterisation
laboratory. It determines whether a patient has a predisposition to ventricular tachycardia
or ventricular fibrillation and thus, sudden cardiac death. With the patient continuously
monitored and, using the medium of a temporary pacing wire, the doctor uses
programmed electrical stimuli to assess the ease with which an arrhythmic episode can be
initiated. Treatments to reverse an induced arrhythmia include intravenous medication,
antitachycardic pacing, shocks from an external defibrillator and life-support if needed.
Most patients in the current research were awake during their EPS. Female patients offered
the most vivid descriptions. Although the EPS was not painful (Mrs D), they experienced it
as an awful and barbaric procedure (Mrs E; Mrs G). They were particularly aware of the
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very rapid heartbeat that signalled induction of their arrhythmia (Mrs E; Mrs G). Some
patients felt the zap (Mr A), or voltage (Mr F) when their arrhythmia was corrected by a
defibrillator shock. Other patients (Mrs D; Mrs E; Mrs G) felt a horrible sense of doom.
Fearing an imminent cardiac arrest, two patients shouted "You're killing me! " (Mrs D; Mrs
E). Even the doctor's panic was obvious (Mrs G):
Mrs G:
Oh, it was awful. I just remember yelling out: "You're killing me!" And he
couldn't revert me, and he had to shock me out of it. ... He couldn't just stop
aggravating my heart. ... And he got a bit panicked too. It was a horrible
experience. I was terribly scared.
Mrs D:
I just can't understand why anybody would want to knock you cold, to give you a
cardiac arrest to find out. I know they have to do it, but it's a horrible feeling, lying
there, and your head's spinning, and you're know you're going to get knocked out
cold, and ... wondering if they're going to get the paddles on in time, and all that.
Elsewhere, common patient concerns about the EPS include unmet needs for reassurance
and support and fear of an impending death (Fricchione, Vlay & Vlay 1994; Menza, Stern
& Cassem 1988). Their fear is justified. Complications such as irreversible arrhythmias or
traumatic cardiac injury are rare but usually fatal (Fricchione, Vlay & Vlay 1994). Patients
(Mrs D; Mrs E), who needed a repeated EPS dreaded re-visiting the chamber of horrors (Mrs
D) and the possibility of further failure:
Mrs D:
And there was also denial: I didn't want to go into cardiac arrest, either, you know,
I wanted to pass this test. I didn't want to have anything to do with the doctors
anymore. And there was that thought of going down there, and knowing that you
were probably going to fail again.
Medical and nursing staff routinely use the term 'failing the EPS', to explain the result
when arrhythmias are induced. For staff, this language simply reflects the diagnostic
significance of the EPS. Patients, in contrast, interpret the term more broadly, perhaps, as
one patient (Mrs D) noted, because the EPS occurred at a time when patients were still
trying to understand the full significance and consequences of their arrhythmic
vulnerability. 'Failing the EPS' further exposes their arrhythmic vulnerability (Mrs D).
Further meaning associated with this phrase arises from the way in which the heart is
routinely accorded symbolic and existential meanings in addition to its physiological
actions. Symbolically, the heart represents the core of existence (Mrs D). Thus, the artificial
demonstration of the heart's vulnerability in the form of the EPS exposes the heart's and
the body's inability to resist being manipulated by another person. The resulting felt loss of
control of the body further exposes the fragility of the individual's life (Mrs D). It is the
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context of these complex and significant meanings that the patient is told of their need for
an ICD.
5.2.3
Needing and learning about an ICD
Based on the EPS results, doctors recommended the ICD as the best thing (Mr A) to reduce
the patient's risk of sudden cardiac death:
Mrs E:
I'd actually said to Dr ... "If I don't have this defib. put in, what'll happen to
me?". And he said "You'll be dead in 18 months". There was no going around it,
he just said "You will be dead..." And I said "OK, I'll have it done!".
No patient or partner had any prior knowledge of the ICD because its use in Victoria was
rare and it had received little media attention. Getting sufficient information was thus a
common problem. Two recent patients (Mr A; Mr F) received printed information prior to
their surgery. Most patients relied on the initial explanation offered by their implanting
cardiologist. The implanting cardiologist was often busy, so patients often asked questions
of other hospital doctors, only to find the answers were ambiguous, in conflict with the
cardiologist's information, or inaccurate (Mrs D; Mr F; Mrs G). Most patients were
annoyed that they had little insight into how the ICD would affect their everyday life.
One patient (Mrs G) did not want the ICD, but after feeling pressured, and knowing her
family were all dependent on its promised security, she reluctantly agreed to an
implantation. Five years later, she acknowledged her ICD had helped them get on with
life. Nevertheless, she remained concerned about the cost, artificiality and bodily impact.
One other female patient (Mrs D) readily agreed to the ICD. To her surprise, her son
expressed disgust at the idea of its insertion. He thought it was a hideous interference with
her body.
5.2.4
The enduring wait: watching, being watched, anticipating
Two patients (Mr A; Mr F) received a pectoral ICD within a year prior to our meeting. Both
remained in hospital from the time of their EPS, confirmation of its need and its
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implantation. In contrast to the patient (Mr A) who saw his five day wait as a bit bloody
quick, the other patient (Mr F) experienced three weeks as a long wait. For each, the wait
was an anxious and apprehensive time. It was also a time when they tried to get some
information about the ICD and its anticipated impact on their lives. They found few staff
who knew enough about the ICD to offer accurate advice.
Five patients (Mr B; Mr C; Mrs D; Mrs E; Mrs G) received an abdominal ICD, with the time
since its implantation ranging from 31 to 70 months. Each of these patients waited at least
three months from diagnosis until ICD implantation. Patients who waited at home (Mr C;
Mrs D; Mrs E) described a protracted, frightening and terrible time (Mrs E) of watching
their body for signs of a recurrent arrhythmias. One patient (Mrs E) likened her arrhythmic
risk to having a gremlin in the body because without warning, she could go into cardiac arrest
[and] fall down. Waiting was a time of intense learning about the meaning of various
symptoms and signs. In the absence of professional guidance or support patients sought
advice from nursing friends (Mrs E; Mr F), medical resources in the local library (Mr B;
Mrs G), but often also relied on trial and error learning strategies.
Waiting was a time of being closely watched by other family members concerned about
any recurrent arrhythmic events. One patient's (Mrs D) husband was her bodyguard. After
assisting in her resuscitation, he remained in her company until her return to work.
Couples seldom discussed each other's concerns during the pre-ICD wait, but patients
accepted and appreciated their partner's close observation:
Mrs E:
The worst thing was that I apparently slept very still, and my husband would wake
up in the morning and look at me and think I was dead. And I'd wake up then, and
he'd be this far from my face — about 4 inches — seeing if I was breathing. ... And
I remember thinking how worried he must be. ... I wasn't as frightened as him, but
I was frightened, you know.
Making sense of their situation involved the patient in trying to understand their body's
arrhythmic vulnerability. The physiological explanation provided by medical staff
attributed the electrical conduction disturbance to damaged heart tissue. Most patients
also constructed an understanding grounded in their vulnerability and their everyday life.
This understanding variously attributed the arrhythmic vulnerability to a weakened
immune system (Mr A; Mr B; Mrs G), excessive work-related pressures (Mr A; Mrs G), past
cardiac events (Mr B; Mrs D; Mr F; Mrs G) and smoking (Mrs E). One patient (Mr A)
blamed his impaired kidney function, since the electrolytes in the blood won't be real good.
Another patient (Mrs D) believed the medically prescribed cold-turkey (sudden) cessation
of antiarrhythmic medication contributed to a cardiac arrest and, several months after ICD
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implantation, another episode of ventricular fibrillation. Her reading of pharmaceutical
texts supported her theory.
The patient's efforts to enhance their physical recovery, fitness and readiness for ICD
implantation were informed by medical explanations about arrhythmias and by personal
theories about the body's vulnerability. Typically, most patients alternated regular exercise
with ample rest. For some patients, a healthy diet included the use of multivitamin
supplements. The power of positive thinking (Mrs E) was also important for maintaining
their optimism and resilience. Having a specific ICD implantation date increased hope and
focused their efforts, but any delay in this date was devastating. One couple (Mr C and
Mrs C) described it as the worst period of time in their wait when the first implanted ICD
failed and had to be removed within hours. Subsequent implantation was delayed because
doctors needed to obtain a more powerful device and also by an infection of the original
wound.
In addition to making sense of their body, its vulnerability and their readiness for the ICD,
patients often reflected on the meaning of surviving a life-threatening cardiac event. They
especially valued having either a bodyguard (Mrs D) who rescued them, or somebody up
there (Mrs E) who offered protection. They realised how it was kind of miraculous (Mr F) that
they were either in hospital at the time of their arrest (Mrs E; Mr F) or quickly found by
people who could initiate their rescue. As elsewhere (Finkelmeier, Kenwood & Summer
1984), gratitude was a common response to their survival. The exception was one patient
(Mrs G) who expressed disappointment about her resuscitation. Based on her religious
faith, she had long ago made her peace and saw a quick death as a release from the effects
of her chronic respiratory illness.
5.2.5
Summation:
Being disrupted
The onset of illness or injury represents a "... conspicuous disturbance [that] possesses the
character of an encumbrance" (van Manen 1988). Similarly, except for a prophylactic use,
living with an ICD originates in the psychological and physical encumbrances imposed by
the onset and risk of life-threatening arrhythmias. Admission(s) to a critical care unit,
diagnostic tests and the body's unpredictability interrupts everyday life. Arrhythmic
predisposition deceptively betrays the patient's body and life. Taken for granted modes of
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existing are put on hold and significantly reframed by enforced changes in everyday
activities. Life becomes a tenuous, day by day existence constituted by fears, anxieties and
a diminished sense of control. Hope resides in the ICD's anticipated protection and
security. Waiting for the implantation is commonly a worrying time of trying to remain
optimistic, acquiring related information and preparing the body.
5.3
Reconstructing life with the ICD
THEME:
Reconstructing life
The experience of receiving the ICD and adapting to its presence and significance
is a time of further considerable change, with the recovery period varying
according to the type of ICD. This period of reconstructing everyday life lasts
approximately 12 months for patients implanted with a large abdominal ICD
generator and approximately 4 months with the smaller pectoral device.
Reconstructing life consists of learning about and understanding the altered body
and learning to trust the unknown qualities of the ICD and its shock(s). Home
provides the meaningful context in which to regain a sense of identity and
cautiously resume various activities. Taking the occasional risk extends perceived
possibilities and provides much needed confidence. The diminution of uncertainty
and ambivalence underpin the restoration of a sense of normality, security and
control. Reconstructing life also means being responsible by protecting the self
and others.
5.3.1
Being prepared: peri-operative education
Most patients had to wait until the perioperative period to receive an explanation of the
ICD's purpose, size and functions from the implanting cardiologist. Patients were
generally disappointed by the fact that few other health professionals could provide
accurate advice about the ICD or insights into the anticipated post-operative recovery
period. Patients noted that doctors provided inaccurate advice about the size of the ICD
(Mrs D; Mr F) and little warning about the severity of the post-operative pain following
implantation of an abdominal device (Mr B; Mrs G). Discussions about nursing staff were
limited to praise for their advice about medications.
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It is possible that more detailed pre-operative advice was offered but not retained. The
emotional and physical stress during this period impeded patients' comprehension of often
complex information (Mrs E; Mr F). One patient (Mrs E) recalled being overwhelmed by the
mind-blowing idea of having in her body this big thing ... that's got leads and stuff.
Explanations were better understood when supplemented with white board diagrams,
written information and seeing a replica of the ICD (Mr A; Mr F & Mrs F).
5.3.2
Receiving the ICD
The patient's immediate post-operative experiences varied according to the size and
location of the ICD generator and, thus, the extent of their surgery. Five patients (Mr B; Mr
C; Mrs D; Mrs E; Mrs G) received an abdominal generator. This involved the insertion of a
rectangular, metallic encased device weighing around 250 grams and approximately the
size of a pack of cards. Surgical attachment of the defibrillating patches to the heart's outer
surface required a thoracotomy, whereas implantation of the generator in a muscular
pocket involved an abdominal incision. Electrodes connecting these patches to the
generator were threaded through a surgically created tunnel in the diaphragm. Postoperative incisional pain and device-related discomforts were common (Mr B; Mrs E; Mrs
D; Mrs G):
Mrs G:
I was so sore! ... Here I was, I had a thoracotomy, a fractured rib, an upper
abdominal incision, and no pain control. And I would have to ask, and I thought,
I'm a wimp.
Patients were discharged home seven to ten days later, but wound discomforts often
persisted for many weeks (Mrs E; Mrs G).
In contrast, implantation of the pectoral model of ICD incurred little discomfort (Mr A; Mr
F). One patient (Mr F) expected to be in agony but hardly felt a thing the next day.
Similarly, the other patient (Mr A) noted that it didn't hurt. There was no ache, no pain, no
nothing.
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5.3.3
Pre-discharge advice
Pre-discharge advice given to patients focused on specific aspects related to the care and
management of the ICD. Patients were warned to protect the ICD by avoiding being near
strong magnetic and high electrical energy fields. Specific situations included avoiding
working generators (Mr A; Mrs D) and welders (Mr A; Mr C). Patients were also advised
to have their ICD checked regularly at an ICD outpatient clinic and to notify the
cardiologist if the ICD delivered one or more shocks.
All patients criticised the paucity of advice regarding specific aspects of their recovery and
the ICD's anticipated impact on everyday activities. Each patient received the ICD
manufacturer's information booklet before their discharge. This booklet affirmed the staff's
explanations about the device and protecting its functions, but it offered little advice to
assist the patient's recovery. One patient (Mr F) noted the incongruity of a cover image of
people holidaying on a cruise ship while inside instructions advised patients to notify their
doctor before planning a trip away from home.
5.3.4
Returning home
5.3.4.1 Coping with uncertainty
Each patient celebrated their return home as a significant family event (Mr B; Mrs D; Mrs
E; Mr F). They noted the relief of again being able to exercise some choice and control over
daily life. Two patients strongly objected to the diet received while they were in hospital.
One patient (Mr B) couldn't eat the food and eventually bought meals from the hospital's
little tuck shop. Another patient (Mrs D), on her home first day at home, defiantly ordered
and enjoyed meal of fish and chips — with grease and salt! Such instances are not unique.
Participants in a study about cholesterol and heart disease noted "... their irritation and
annoyance about having their dietary choices dictated to them, and the work and denial of
pleasure involved in maintaining a 'healthy' diet" (Lupton & Chapman 1995, p. 486).
Possibly, exercising dietary choice reflects the desire for a sense of normality.
110
Although relieved to be home, patients endured a general sense of insecurity and anxiety
about their arrhythmia and the ICD's unknown potential. Fatigue compounded their
uncertainty:
Mr F:
My immediate concern, of course, was surviving, and looking in the short term.
Will this treatment work? ... It was good coming home. I'm the sort of person
that's never experienced fatigue much, and I found it strange getting tired, having
to go back to bed to rest two or three times a day. I found this strange. even though
in retrospect ... looking back at the photographs, you wouldn't be surprised.
Mrs E:
You're not quite sure what's going to happen. Even going down this road here ...
just in the car, was a nerve-racking business, because you've been molly-coddled in
there. I think most people find that when they first come out of hospital, but it's
more so when you've got ... a machine in you that's going to do something.
Mrs D:
Oh, I was relieved to be home. I was very sore. I would have only been up for one
hour in every three, I suppose. I'd get up for one hour, and go to bed for three, at the
start.
Patients were sensitive to the family's anxiety, so put on a brave face (Mrs D). They avoided
discussing their personal concerns (Mr B; Mrs E). After their first week at home, patients
usually encouraged other family members to resume their usual routines, including
returning to work. Despite exuding an air of confidence, the patient's first day alone at
home was a very apprehensive time:
Mrs E:
The first day they all left me was a bit frightening, because you sort of think, "I've
got to get up and walk; and I've got to do this". You're so determined to get better
quick. ... It is a bit scary, because you're here, and you think, I could die, and
nobody would know, and what if I can't get to a phone.
5.3.4.2 Receiving mixed medical advice
The early period of being home brought into focus the patient's needs for information.
Besides needing reassurance, most wanted information about post-ICD exercise and
physical activities, diet and driving (Mr B; Mrs D; Mr F; Mrs G). Patients (Mr C; Mrs D;
Mrs E) realised the ICD was a rare treatment and that doctors were really flying in the dark
(Mr C) when offering advice about everyday activities. Patients thus sought additional
information from nursing friends (Mrs D; Mrs E; Mrs F) and medical texts (Mr B; Mr F;
Mrs G). One patient (Mrs G) had difficulty in getting information from her doctors and,
much to her cardiologist's displeasure, obtained and read a range of related medical
articles about patient outcomes after ICD implantation.
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5.3.4.3 Making sense of the altered body's symptoms
Differences in how patients experienced their body related to the type of implanted device.
Within two weeks the patients who had received a pectoral ICD were hardly aware of its
presence. There was no mention of the problems reported elsewhere, such as shoulder
pain, restricted arm movement, protruding leads or bulging generators (Burke 1996).
In contrast, most patients with an abdominal ICD continued to experience troubling
symptoms associated with its size, hardness and position. One patient (Mr B) noted how
his generator pocket was originally rough, like sandpaper inside you until it all settles down. He
was also aware of his device ... sitting under the rib cage, applying pressure on adjacent internal
organs. Abdominal pressure was exacerbated by prolonged sitting (Mrs E; Mrs G), heavy
housework (Mrs D), bending, or leaning over something (Mr B; Mr C; Mrs D). This
pressure resulted in a sense of pinching, light bruising (Mr C; Mrs D; Mrs E), backache or
spasms (Mrs E) and generalised aching (Mrs D). Other sensations included persistent
feelings of fullness after eating only small amounts of food (Mrs G), light-headedness (Mr
B) and a general feeling of being unwell (Mrs D; Mrs E; Mrs G).
Patients received little guidance for interpreting the significance or minimising the
occurrence of various symptoms. They sought medical attention for distressing or
persistent symptoms. Through trial and error they learned strategies to relieve most
symptoms and their anxiety. Specific strategies included positional changes, a short rest,
mild analgesia, activity modification and the partner's use of distractions or relaxation
strategies (Mr B; Mrs D; Mrs E; Mr F).
Symptoms associated with side-effects of medication also took time to recognise and
resolve. Commonly prescribed medications included antiarrhythmic, diuretic and antihypertensive agents, as well as Digoxin, potassium supplements and, more rarely,
anticoagulant (Mrs D) or antidepressive agents (Mr B). Rearrangement of medication times
reduced one patient's (Mr F) dizziness and nausea. Another patient (Mr B), however,
stopped taking his antihypertensive medication because the associated severe dizziness
restricted his everyday activities. Another patient (Mrs D) who was prescribed both an
antiarrhythmic and an anticoagulant agent suffered a severe epistaxis and required several
days of hospitalisation.
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Patients closely assessed their body's response to increasing levels of physical activity.
Specifically, patients were alert for increases in the pulse rate, breathlessness or level of
tiredness (Mr A; Mr C; Mrs E; Mr F). One patient (Mr A) resumed his farming activities
within two weeks of receiving his ICD. He soon realised that providing he took things
steady and did not go like a bull in a china shop he did not get puffed out. Another patient (Mr
F) spent an afternoon sawing timber. Afterwards, he recognised he may have overdone it a
bit because he still felt wrung out two hours later. Taking care to pace his activities
contributed to a situation where, within four months of ICD implantation, he felt as if was
sparking on all six cylinders again.
The female patients in this research each reported experiencing persistent vague physical
symptoms and, at least for the first 12 months, a diminished sense of a worthwhile future.
Two women (Mrs E; Mrs G) wondered if they had developed cardiac complications
because their symptoms mimicked the warnings signs listed in pamphlets about heart
attacks. Both women described how their implanting cardiologist disparagingly dismissed
such concerns as insignificant. One patient also found this doctor would not answer any
questions (Mrs G).
Mrs E:
But I'd had sweats, felt flushed, didn't sleep, and if you look at the symptoms for
heart attack people, it's all the same things. I used to go down the list and think
they're all the same. The anxiety ... and I'd cry easily, and they say that when you
have a heart attack you get depressed and I ... just thought is this worth it, you
know. When I mentioned it, he (the cardiologist) said "You poor old chook", and
that was the end of the conversation. ... You're dealing with male doctors so they
have to learn how to handle you, and I mean they don't know ... That was one area
where I felt I was in a different land you know.
After many months of visiting local doctors, both women's symptoms were diagnosed as
menopausal. Hormone replacement therapy helped one woman:
Mrs E:
My local GP was the one that helped me. ... Once I was on the hormone treatment I
was fine. Obviously, it was more to do with the menopause.
The other female patient's (Mrs G) doctor refused to prescribe this therapy because he
doubted its safety in patients with cardiac problems. This patient's severe symptoms
continued for at least 12 to 18 months.
Local doctors were poorly informed about the ICD. Some doctors made little effort to
become informed, and aside from writing repeat prescriptions, referred the patient to a
specialist if any physical problems occurred (Mrs D; Mrs G). Patients especially
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appreciated those local doctors who tried to learn about ICDs (Mr B; Mr C; Mrs E) and
who readily offered support. Specific examples of this support included facilitating contact
with the implanting cardiologist (Mr C), educating paramedical staff about the ICD (Mr B;
Mr C), and offering supportive advice about symptom management (Mr C; Mrs E).
5.3.4.4 Regaining confidence in the body and self
Despite their initial fatigue patients realised the importance of trying to increase their level
of activity. Walking was the main form exercise. Pride and increased confidence
accompanied the milestones achieved as they measured their walks according to various
local environment markers:
Mrs D:
It was a slow recovery, you know. I was really wrapped the first day that I could
walk down to the shop and buy rolls, which was a couple of weeks down the track.
Then I could walk the full length of the main street. Each little milestone was good.
Other strategies also extended patient confidence. Two patients (Mrs E; Mrs G) enrolled in
local cardiac rehabilitation programs specifically designed for patients recovering after a
heart attack or cardiac surgery. Such participation was especially valued because it offered
the opportunity to be part of a professionally supported exercise program. Inner strength
and a sense of humour also became useful resources for remaining positive and being
resilient (Mrs E; Mr F). As noted by one patient (Mrs E), it was also important having a
partner who overcame their own anxiety and concern, learned to let go and encouraged a
sense of independence, such as the desire to take an interstate holiday within two months
of ICD implantation:
Mrs E:
He encouraged us to do it. ... But that was the independence thing, me wanting to
make sure that I could still do all those things, and I was probably in a hurry to do
them, you know.
Being able to trust the ICD was fundamental to the restoration of a sense of confidence,
independence, recovery and meaningful future:
Mrs E:
Yes, it is trust. ... You can be cynical about a lot of things, but eventually you have
to trust the doctor you're dealing with is doing the best for you. And you have to
trust that the machine is going to work, because you can't live in an anxiety state.
You just have to accept some things.
Developing and extending this trust involved a fine balance between know[ing] your
limitations (Mr A) or staying within sensible limits (Mr F), and taking the occasional risk. One
patient (Mr C) reflected: it's no good sitting on the couch there ... until I'm 80. Another patient
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(Mr F) demonstrated similar resolve by again walking up the steep hill near his home. His
ability to again reach the summit, without adverse physical problems, symbolised a
restored sense of normality. For other patients (Mr A; Mr C; Mrs E; Mrs G), the satisfaction
derived from being productive outweighed any associated risk:
Mr A:
I've spent a lifetime doing ... what I like doing, ... I just love the land, and you
know, it gives me pleasure get some land, and to do what has to be done. To look
after it, and have it in a better condition when you have finished with it than when
you started.
Most recipients of an abdominal ICD resumed their previous activities within months of
their surgery. Various physical symptoms and discomforts delayed a recovered sense of
normality for at least 12 months and up to 21 months for one patient (Mrs G).
5.3.4.5 The importance of returning home
For five patients (Mr A; Mr B; Mr C; Mrs E; Mr F) home was at least 15 to 30 minutes from
the nearest ambulance station. Regardless, all patients not only returned home but also
resisted any thought then or later of moving to be nearer a health facility. Two patients (Mr
C; Mrs E) noted any such enforced move would kill them. Another patient (Mr A) accepted
the fact that the return to his remote farm made it harder to access to emergency services:
Mr A:
Yeah, about half an hour to get out. But so what? — You can't have the world at
your feet, really. We live in the country, and that's part of it, and I like living in
the country.
Regardless of their own sense of wanting to be home, patients recognised that reduced
access to emergency help was a source of anxiety for their partners. A mobile telephone
facilitated regular contact between patients and partners, in addition to being the means of
calling for help in an emergency (Mr A; Mr B; Mr C).
The significance of home and its meaning has been the subject of much philosophical
discussion (e.g., Baldursson 1995; Buttimer 1980; Cooper 1990; van Manen 1990). The
suggestion is that home provides a sense of belonging or rootedness that is integral to
human identity (Godkin 1980). In addition to being a repository of personal meaning,
home is also the place where the individual can truly be themselves. Patients in this
research described being at home as being in a safe place that was vitally important to their
recovery, identity and belonging. In contrast to their entry into the technological
environment of a critical care unit, home reunited them with the people, things and places
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that enhanced their lives with meaning prior to the disruptive arrhythmic events (Mr A;
Mr B; Mrs D). Home also provided patients with various reminders of their pre-ICD self
and thus useful reference points for their recovery. For example, they noted the calming
and revitalising benefits of again walking to the farm gate (Mr A), strolling nearby streets
(Mrs D), climbing nearby hills (Mrs E; Mr F), and caring for a farm (Mr A; Mr C).
One patient (Mrs E) noted how being home was very important in the beginning after her
surgery. When asked to explain this importance, she turned to the open window, opened
her arms toward the surrounding native forest and noisy birds and quietly added, this
helped me. As if to illustrate this significance, she recalled an incident that occurred three
months after her cardiac surgery. Upon her return from a day trip she found firefighters
blocking vehicle access to the steep road to her house. Undaunted by a nearby bushfire
threat or her still healing wounds, she left her car and walked the kilometre track: I was
determined to get up the hill and get home. You see, determined to get home (Mrs E).
These insights exposed and challenged my assumption that, because of their arrhythmic
predisposition and unfamiliarity with the ICD patients might want to recuperate in a
setting close to medical facilities. The next chapter notes this assumption did reflect the
meaning of home for partners.
5.3.4.6 The ICD and sexuality
Patients received no medical advice about the sexual aspects of living with an ICD,
possibly as one patient (Mrs E) observed, because they would have felt uncomfortable. Two
couples recalled their fears that sexual activities might induce another arrhythmia and an
increased likelihood of the patient being shocked (Mr B; Mr G). After receiving multiple
shocks (unrelated to sexual activity) one patient (Mr B) subsequently abstained from any
sexual intimacy. One partner (Mr G), who had been involved in his rescuing his wife after
a cardiac arrest, noted how fears about a recurrence framed concerns about their sexual
relations: There was always the question of how far should we go. ... What if it triggers it off? One
male patient (Mr A) implied a concern about his partner co-experiencing a shock: I haven't
defibrillated in the presence, you know, in the presence of the missus, so to speak, so that she's likely
to get shocked.
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The ICD's presence and power framed the identity of being female. First the device was a
source of mystique and curiosity to male friends. One patient (Mrs E) recalled that male
friends were intrigued to learn that her husband, who had his arm on her back at the time,
felt a tingling sensation when she received an ICD shock. As well asking the question of
"Well, do you, or don't you [have sex]?", these male friends were curious about the effect of a
shock during intercourse:
Mrs E:
They are fascinated by the fact that, you know, the machine gives me a zap, and [my
husband] feels it, and that's all a curious thing, especially with sexual intercourse.
Being referred to as bionic woman by male friends implied a perception that the ICD confers
special powers on the female body (Mrs E). In contrast, another patient (Mrs G) explained
that the visibility of the generator bulge and its associated scarring contributed to
perceiving her body as ugly and unromantic. In addition, she believed the ICD's presence
reduced her sexual appeal. It left her feeling turned off as somebody ... [who is] romantic or
sensuous.
5.3.5
Restoring a routine
5.3.5.1 Being productive
All patients were in paid work or self-employed before receiving their ICD. Two patients
(Mr B; Mr C) experienced poor general health and retired early but kept busy through
household and community activities. Reduced income required a sound household budget
(Mr C).
Five patients returned to work within months of receiving an ICD. Two patients (Mr A; Mr
F) were self employed. Two others (Mrs E; Mrs G) obtained new positions, but without
mentioning their ICD or risk of arrhythmias to their new employers. Being able to work
was a significant milestone in the patient's recovery (Mr A; Mrs D; Mrs G). As well as
supplementing the family's income, work increased self esteem and fulfilled the desire to
have a life (Mrs E). Such was the importance of work to one patient (Mrs G) that she
returned to a stressful job, expecting that deteriorations in her health would result in an
enforced early retirement. Three years later, and still relatively well, she received her first
ICD shock. Interpreting it as a turning point, she took the chance to jump ship and secured
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a more enjoyable job. Despite recent health problems, she tried to maintain an appearance
of being well and avoided taking sick leave.
Being productive, through paid work or through community or household contributions
(Mr B; Mr C) fulfilled a second social goal. Patients commonly reflected the desire to re-pay
people (Mrs G) and society for receiving excellent care (Mrs C) and an expensive health
treatment (Mr A; Mr C; Mrs E; Mrs G). One patient (Mr A) believed that his continued
hard work ensured society got good value for its investment:
Mr A:
I'm just thankful that I got it. It's worth about $30,000, you know. ... At least
they're getting value for it, as I'm still working, and I'm happy to do it.
No patient reported any significant work-related problem. Working meant avoiding
situations or tools that might impede the ICD's functions. Typically, they avoided the use
of a welder (Mr A) or an electric drill (Mr C), or being near to potentially hazardous
electromagnetic forces (Mr B; Mrs G). Three patients later retired to spend more time with
their family (Mrs D; Mrs E; Mr F).
5.3.5.2 Resuming driving
All patients were car drivers before ICD implantation. All noted the fundamental
importance of being able to drive for their sense of independence and engaging in social,
occupational and community activities. After ICD implantation, most endured some
period of medically imposed driving restrictions. These restrictions created a dependency
on others, slowed the patient's resumption of routines and diminished their quality of life.
One patient recalled the anticipated deprivation had she been permanently barred from
driving:
Mrs E:
You'd really be killing me almost, if I couldn't drive ... I mean, I'd have to move
where I could catch buses and stuff. It'd worry me if I couldn't drive, because I
spend my life in the car.
There was no consistency among this patient group regarding the duration or type of
driving restrictions, nor any pattern that suggested advice related to the risk of
arrhythmias, post-ICD experiences or type of device. One patient (Mrs E) resumed driving
three months after ICD implantation and five months after her cardiac arrests. Her
cardiologist allowed her to drive 100 kilometres to a regional city but not to an interstate
destination. Another patient (Mrs G), who had also suffered an earlier cardiac arrest, was
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told never to drive again. Having obtained evidence from medical literature about the low
incidence of traffic accidents among patients with an ICD, she convinced her cardiologist
to change his mind. Five years later, and incident free, she drives a daily average of 100
kilometres as part of her job.
Patients also found that different doctors involved in their care offered varying and
sometimes conflicting advice (Mrs E; Mr F; Mrs G). One patient's (Mr F) local doctor
advised him never to drive again. His cardiologist recommended a 12 month wait, but his
implanting cardiologist advised a 3 to 6 month wait.
All patients resumed driving between one and eight months after ICD implantation, even
if this was contrary to medical advice. Being able to drive also meant being responsible.
Patients waited until their chest wounds healed (Mrs E; Mrs G) and felt confident that they
were not a risk to other road users (Mr B; Mrs E; Mr F; Mrs G). Driving was important to
one patient's (Mr C) continued volunteer activities and farm management. Concerned
about the risk of losing control if driving at the time of an arrhythmia, he persuaded his
cardiologist to reprogram the ICD to deliver an earlier shock during future arrhythmias
and thus minimise the risk of reduced consciousness. His changed driving practices
included refusing to transport children between different venues.
No patient reported being involved in a traffic accident related to the experience of an
arrhythmia or ICD shock. One patient's (Mr B) vehicle was stationary at traffic lights when
he received three shocks. He swapped seats with his partner who drove him to hospital.
5.3.6
Learning to trust the ICD
Learning to trust the ICD took time because it involved making sense of potential
mechanical problems, but more significantly being shocked. The experience of being
shocked varied according to the number of shocks received and the patient's conscious
state. Three patients (Mr B; Mrs E; Mrs G) were shocked while conscious. Two (Mrs E; Mrs
G) received a single shock but another (Mr B) received multiple sequential shocks. Three
other patients became unconscious before receiving either a single shock (Mr A; Mrs D) or
several shocks (Mr C). With one exception (Mr B), patients recovered quickly and without
any adverse after effects.
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5.3.6.1 Experiencing a single shock
Patients typically used metaphors to describe the sensation of receiving a single shock.
Being shocked was described as just a bang (Mr C), a powerful but not painful feeling of
being booted really hard in the chest (Mrs D) or receiving a sudden POW!! in the middle of
the back (Mrs E). Although worse than touching an electric fence, its instantaneous impact
meant it was all over before you realise what's happened (Mr C). One patient (Mrs G) who felt
as if the shock had jolted everything experienced residual chest and joint soreness for the
next two days. A single shock alleviated the anxiety of wondering what a shock would be
like. It also demonstrated the ICD's effectiveness and reliability:
Mrs G:
You sit like a cat on a hot tin roof for the first year, expecting the thing to go off.
Are you able to go here or will you go there?
Mr A:
You feel a bit full in the chest, and it feels a bit funny, a bit different. And you'd
rather sit than stand and fall over and hit your head. [The shock] was a non-event
... Next thing, I'm up walking around, and just going on with what we're doing.
Unbelievable!
Being shocked was, nevertheless, a disconcerting and sombre confirmation of the patient's
continuing vulnerability (Mrs D; Mrs E; Mrs G). For one patient (Mrs E) the shock occurred
exactly 18 months after ICD implantation, thus affirming her cardiologist's earlier
prediction that without it she would be dead in this time.
Making sense of being shocked led patients to identify precipitating factors. Factors
identified included being stressed (Mrs G) or overly tired (Mr C; Mrs G), recent excess
physical exertion (Mr A; Mrs E) or changes to prescribed medications (Mrs D). Patients
used this understanding to minimise the risk of further arrhythmic events and shocks.
5.3.6.2 Experiencing multiple shocks
The two patients (Mr A; Mr C) who received multiple shocks were unaware that the ICD
could deliver more than one shock. One patient (Mr C), who was unconscious during his
shocks, learned of the event from bystanders. Although relieved and grateful that the ICD
intervened with life-saving shocks, he expressed concern about his felt loss of control.
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The patient (Mr B) who received multiple shocks while conscious vividly recalled each
distressing shock:
Mr B:
It's like it's right on the heart, and you can just feel this real whack in one spot, and
you sort of sink back in your bed, and you yell. You've no control over it - it hurts
a helluva lot.
The shocks continued after his arrival in the emergency department of a rural hospital.
Staff lacked the knowledge needed to temporarily deactivate the ICD or revert his
arrhythmia and thus reduce his pain. He and his wife felt powerless to prevent what they
thought was his imminent death. Based on telephoned advice from the patient's
Melbourne based cardiologist staff reverted his arrhythmia with intravenous medication
and eased his immediate pain with sedation. This patient's experience destroyed his
confidence in the ICD. For nearly two years, his anxiety contributed to debilitating panic
and anxiety attacks and severe depression. Its negative impact on his quality of life
resulted in his desire to have the ICD removed:
Mr B:
Well I think the defib is always a worry, it's always playing on your mind, always
there in the background. And you're always thinking, what happens if the heart
rate goes up too fast, or too high, or something? Is this thing going to whack me?
... Yep! Take it out! I don't like it. I don't like something I've got no control over.
... The whole time it's a constant worry. I myself would prefer it out, and put up
with the consequences, than have this thing go off all of a sudden, and who knows
where'd you be.
5.3.6.3 Being in awe of the ICD
Awe, a sense of fascination and of wonder typified patients' descriptions of the ICD. It was
variously described as a mind-blowing (Mrs E), amazing piece of engineering (Mr A) that
evolved from space age technology (Mr F). As an internal ambulance (Mr A), it recorded
arrhythmic events to the second, what happened, when it happened, and what it did, including
the delivery of a zap or shock (Mr A). For most patients, awe of its powerful capabilities
reflected a positive acknowledgment of its value. For two patients (Mr B; Mrs G), however,
this awe took a negative form. As noted above, one patient's (Mr B) multiple shocks
contributed to a permanent dread of the ICD's omnipotent power. The other patient (Mrs
G) felt as if the ICD programmed her body and, as described later, her future death.
The ICD's invisible monitoring functions contributed to this sense of awe. Patient survival
was dependent on a fully functioning ICD, so it was not surprising that concerns about its
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reliability were common, especially in the early recovery period (Mr A; Mr B; Mrs E; Mrs
F). Patients avoided known situations likely to interfere with this functioning.
Nevertheless, drawing on their everyday knowledge of other electrical equipment, they
wondered if friction or wear and tear might cause metal fatigue and thus damage to the
leads (Mr A; Mr B). Subsequent medical research (Jones et al. 1995) confirms this
possibility. Constant rubbing against bone or cartilage has been shown to damage the
protective coating of the electrode and increase the risk of a lead fracture. The patient is left
vulnerable to inappropriate shocks or sudden death if the ICD fails to detect and correct
arrhythmias (Jones et al. 1995).
Further threat to the ICD's reliability arises if it malfunctions due to an inherent technical
fault. Two patients (Mrs D; Mrs E) initially gave little attention to overseas press reports
that some patients with the same ICD model required a replacement device due to a faulty
battery. Some months later, each received a call to visit their cardiologist. After having
their device checked, they received a small hand held tester with instructions on how to
use it to check their device each day. After religiously checking (Mrs D) the ICD for many
weeks each patient reduced the frequency of these checks over time. One patient (Mrs D)
stopped using her tester and her partner forgot it was in a bedside drawer. The other
patient (Mrs E) infrequently checked her device. Late one night she discovered a problem:
Mrs E:
I just tested it, and it said "Ring your doctor", you know, a little red light came on.
It gave me a fright. My husband panicked then —that was the only time I saw him
really panic. It was 11 o'clock at night, and he just said "Well, I'm ringing", which
he did, and I was told to go in the next morning. And [the implanting cardiologist]
said "It's not working. We're going to have to change it".
The doctor and cardiac technician blamed the failure on a faulty device, but the
manufacturer's representative denied such a possibility:
Mrs E:
...The [manufacturer's representative] ... gave me this lot of nonsense, which I
didn't believe, and I'm still angry with her ... She actually said that I'd used the
machine so much that I'd actually worn it out. I knew that wasn't true. ... I would
have preferred it if she'd have said it malfunctioned. My husband thinks ... they
can't actually say something malfunctions, but I think they should be able to.
Unlike other patients (Sneed, Finch & Leman 1994), this patient did not lose confidence in
her new device. Her primary concern related to the possibility of faulty leads, similar to
problems reported in the press about pacemaker leads. Her doctor pre-empted this
concern:
Mrs E:
When the machine was changed, it was round about the same time that the press
was coming out, and [the doctor] said "I've checked all your leads, and they're all
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fine". I didn't need to ask him ... so, that was really good for me. I thought
"Phew!"
SR:
And you didn't need new leads put in with the new battery?
Mrs E:
No, they just changed it, and they checked it all, and everything was fine. Yes, so
that was a relief ... that he pre-empted my concern.
Patients also worried whether a mobile telephone might interfere with the ICD's functions.
Most patients regularly carried a mobile telephone, both for personal security and to
maintain regular contact with family members (Mr A; Mr B; Mr C; Mr F). Again influenced
by press reports, they wondered if electromagnetic sources from the mobile phone might,
as with permanent pacemakers, interfere with the ICD's functions (Mr B; Mrs D). Although
cardiologists dismissed this possibility (Mrs D), more recent evidence reveals how close
proximity to a cellular mobile telephone can disrupt the generator's functions (Bassen,
Moore & Ruggers 1995; Fetter et al. 1998).
Despite the many potential risks to the ICD's reliability, patients accepted some
uncertainty as inevitable. They realised the futility of being continually anxious:
Mrs E:
You have to trust that the machine is going to work, because you can't live in an
anxiety state. You just have to accept some things.
Collectively, the resumption of everyday activities, time without problems, a growing
sense of personal achievement and an acceptance of uncertainty nurtured a patient's
growing trust in the ICD.
5.3.7
Being responsible toward others
Being responsible toward others was framed by the recognition that, in addition to being
concerned about the patient's health, family, friends and colleagues were unlikely to know
about the ICD or its actions (Mr C; Mrs D; Mrs E). Patients tried to alleviate device related
concerns by offering simple reassuring explanations that likened the ICD to a special type
of pacemaker and avoided mention of its electrodes, patches or shocks. Such explanations
reduced the likelihood of being asked awkward questions (Mr F), but people who wanted
more information were reminded of the external defibrillator so often seen in televised
medical shows (Mrs D).
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Being responsible also meant protecting other people from undue anxiety, alarm or worry.
One patient (Mrs E) quickly realised that her decision to play a game of tennis alarmed her
friends:
Mrs E:
That was a nightmare, because they wouldn't make me run and if I did, they'd
shout "Don't run! Don't!". ... I just thought I've got this bunch of friends, who
are really great, but I made them really really nervous by playing tennis. So it was
better not to do it.
Another patient (Mr C) noticed that, soon after his original collapse, his local community
no longer sought his voluntary help with various activities. In addition, people would
often intervene if they saw him doing any physical chores. He realised they could not
handle ... the fact that you might kill yourself. Recognising their concern, he and his partner
used public settings to explain the ICD, offer first aid advice and give reassurance. The
community's increased confidence became obvious in renewed requests for his help. This
in turn helped to restore his sense of belonging within his community.
Finally, being responsible facilitated the patient's desire to be treated as normal by friends.
As noted by one patient (Mr B), friends had to feel comfortable. Hence, they were told
enough to summon help if needed, without being overawed by the patient's arrhythmia
problem or presence of the ICD. Noting how he wouldn't have it any other way, this patient
enjoyed sharing some beers with his mate. They occasionally bought a slab and did a good job
of dinting it (Mr B).
5.3.8
Summation: The nature of reconstructing life
The theme of reconstructing life reflects patients' experiences related to ICD implantation
and taking responsibility for their recovery that is often framed by limited professional
information or support. Lethargy, as well as uncertainties about the ICD's unfamiliar
physical presence and capabilities, frame the activities and view of the early post-discharge
period. Home provides the meaningful context for making sense of the ICD's bodily
presence and significance. In time, confidence and trust in the ICD increases as the patient
gradually resumes everyday activities. Being able to drive, even if contrary to medical
advice, provides much needed independence. Driving facilitates the personal and social
rewards of being productive, either through paid work or voluntary activities. Being
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productive helps to repay the perceived debt owed to society in return for the skilled
health care and the expensive ICD received.
Reconstructing life varies according to the type of ICD in place, the nature of its physical
presence and the impact of its shock(s). Being shocked vividly reminds patients of their
persisting vulnerability. For the conscious patient who receives a single shock, or the
unconscious patient who receives multiple shocks, being shocked confirms the ICD's
effectiveness and reliability.
In contrast, multiple shocks for the conscious patient incurs considerable distress. The
distress incurred by this experience destroys confidence in the ICD and produces
omnipresent fears that diminish quality of life and hope for a meaningful future.
Reconstructing life is a complex, dynamic experience that, in most instances, restores a
sense of control and normality and a responsibility to reciprocate the support offered by
others.
5.4
Appreciating and celebrating life
THEME:
Appreciating and celebrating life
Appreciating and celebrating life reflects the culmination of the recovery
experience. It is a time for fulfilling various obligations and making sense of the
susceptible body within the context of one's life. The focus of existence shifts from
the ICD's presence to a life that derives its meaning from past experiences and
current philosophies. The overriding desire is to move forward in personally
meaningful projects. For most patients, the ICD's proffered security and
confidence creates future possibilities.
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5.4.1
Achieving a meaningful life
5.4.1.1 Living on borrowed time
The determination to achieve a meaningful life required patients to come to terms with the
ambivalence inherent in living with an ICD. Unlike other potentially fatal health situations,
a predisposition to arrhythmias presents the patient with an unpredictable and poorly
defined future and quality of life. Patients noted that the receipt of an ICD offered hope,
but did not abolish uncertainty: things can happen suddenly (Mr F) and with dire
consequences. Gradually, growing trust in the ICD eases this ambivalence and shifts the
focus toward an appreciation of life.
5.4.1.2 Evaluating the meaning of life
Patients integrated personal philosophies, values and aspirations when interpreting the
meaning, nature and significance of their lives. Typically, these reflections recognised that
ambivalence and many other aspects of their situation were beyond their personal control.
One patient (Mr A) believed that regardless of the ICD's presence if your number's up, your
number's up. Acknowledging this inevitability he continued his enjoyable but sometimes
strenuous farm work:
SR:
What you're telling me, is that when your time is up, your time's up, no matter
what you've got inside of you.
Mr A:
Oh, yes, it's no good worrying about it. You've got plenty to do ... when you're
living rather than worrying about dying, that's what I think.
Another patient (Mrs E) reflectively observed that you do your best, you fight your hardest, but
que sera sera, ... what will be will be. Such perspectives were implicit in not being either too
pessimistic or too optimistic (Mr F) in their views of the future.
Quality of life rather than its duration became a primary focus of attention. Noting her
acceptance that she would not make old bones, one patient (Mrs E) observed how each
birthday brought ambiguous meanings. She celebrated each birthday as an extension of
her life yet she was also reminded of the years going too fast. The sense of time running
out meant it was too precious to waste on worrying about trivial matters or regretting lost
opportunities (Mr A; Mr C; Mrs E). Instead, as one patient (Mrs E) noted, it was more
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personally rewarding to take some time to stop to smell the roses (Mrs E) and reflectively
appreciate and value what otherwise seems inconsequential:
Mrs E:
I appreciate living, very much so. And I get angry with people who don't see the
birds and bees, or stop to smell the roses. I didn't myself until I had all this happen.
And you just appreciate everything and realise that people let the little things
worry them too much, the little petty stuff. ...It's made me think. Yes, I'm sort of
much happier, and more content, I suppose, which sounds crazy, but it's true. ...
The little things in life don't worry me now. I see people worrying about stupid
things, and I think, "Does it matter?"
Metaphors of time, distance and movement were common in patients' descriptions of their
recovery. One patient (Mrs D) saw each achievement as the sense of having walked another
mile. Other patients (Mrs E; Mr F) recalled pacing their activities, exercising caution and
being ready to slow down if needed. Another (Mrs G) likened her protracted recovery to
going around corners, of warily moving forward, yet alert for hidden obstacles.
5.4.1.3 Resolving tensions
Achieving a meaningful existence meant trying to resolve various tensions in everyday
life. One tension arose from a context in which the partner was the patient's confidante and
principal source of support. Patients described a sense of responsibility to protect their
partners. Especially in the early recovery period, patients tried to hide their concerns,
worries and related issues from their partner (Mr A; Mr B; Mrs G). One patient (Mr B),
reflected that he kept his wife in the dark about a lot of things, including his possible need for
a heart transplant.
Another source of tension occurred when patients wanted to openly discuss their health
situation so that partners and families could make plans in the likely event of an early
demise. Such efforts were, however, often resisted. One patient's family dismissed such
discussions as morbid (Mrs E). She viewed their resistance as an inability to accept the
reality of her situation:
Mrs E:
The hardest thing I've found is, is that my family won't talk about me not living a
long life. I actually said something just recently, and one of them said, "Oh, don't
be morbid", and I said, "I'm not being morbid. I just want you people to face up to
[it]". ... They find that hard to talk about. ... I feel like I'm stronger than they are.
Another patient (Mrs G) originally overcame her misgivings and reluctantly agreed to ICD
implantation to ease her family's fears and insecurities. Five years later her misgivings and
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dislike of the ICD, together her failing health, contributed to her decision to refuse a
replacement when the current device's battery depleted its energy reserves. Her partner
vehemently opposed her decision and likened it to an act of euthanasia. The unresolved
tensions in which others appeared not to hear, understand or respect the patient's wishes
added to the felt sense of isolation. Female patients recovering from cardiac surgery, heart
attack or cardiac investigations express a similar tension, with one noting: "Sometimes I
feel like no one can hear me, they don't want to know what I am going through" (cited in
Fleury, Kimbrell & Kruszewski 1995, p. 478).
Other tensions, such as the patient's perceived responsibility to fulfil various social and
personal obligations, were more easily resolved. Mention was made earlier of their return
to paid and voluntary productive activities. Patients also ensured that their legal affairs
were in order (Mrs E; Mr F). Resolving tensions and satisfying perceived obligations made
it possible to re-focus their attention on the future.
5.4.2
Living with an aberrancy of the stressed body
For most patients, the possibilities inherent in moving forward were grounded in an
understanding of their existence, body and meaning of life. For example, they understood
their arrhythmia as an aberrancy, something out of the ordinary, or a gremlin (Mrs E) that
occasionally, albeit dangerously, interfered with their otherwise busy lives (Mr A; Mr C;
Mrs D; Mrs E; Mrs G). As noted (Chapter 5.2.4), part of this understanding involved
reducing the physiological and everyday stresses that increased the body's vulnerability to
arrhythmic events.
Finding meaning in life also involved making sense of and accommodating the body's
physical changes. Several patients (Mr B; Mr C; Mr F; Mrs G) modified everyday routines
to minimise physical symptoms associated with their pre-existing lung or cardiac
dysfunction. In the previous survey patients were asked to rate their perceived quality of
life on a 10 point linear scale (1-10, with 1 being poor and 10 being excellent). Five patients
(Mr A; Mrs D; Mrs E; Mr F; Mrs G) rated their quality of life as good (score, 7 to 8). Two
other patients attributed a reduced quality of life to the physical limitations imposed by
their cardiac failure. One patient (Mr B) rated his quality of life as satisfactory (score, 5),
while the other (Mr C) rated it as fair (score, 3).
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Patients did not describe living with the ICD and an arrhythmic risk as living with a
chronic illness or being chronically ill. Perhaps in part, this derived from the desire not to
be seen as being different. Alternatively, as one patient (Mrs E) explained, it also reflected
a process of adapting to the changed body and learning to move on:
Mrs E:
I'm really quite well. ... I don't even have to see [the cardiologist] anymore. He was
seeing me regularly, and then it got to 12 months, and then he just said "Well,
unless you need me", you know, and I thought, "Terrific!". And that makes you
feel good, because you're just thinking I don't want to have to go to a doctor unless
I have to....
SR:
That's interesting I think, because ... a lot of the literature ... talks of people who
have rhythm problems as being chronically ill, and -
Mrs E:
Yes, but I don't consider that I am, because I'm not.
SR:
I thought, this is not how people come across who've got a defib. They've got on
with living, and -
Mrs E:
No, I don't consider myself as ill at all. I'm living with a defib. as you say. I don't
consider that I'm ill; I really don't. ... My family get concerned when I over-do
things. My daughter in particular will ring up and say, "Mum, look after yourself,
please", you know, because I rush around and do things ... And I've learned to pace
myself a bit too, I think. And the walking makes me strong.
SR:
If I was to say to you, what's living with a defib. meant for you, have you got any
words, phrases?
Mrs E:
Not really. I just suppose it's 'adapting', really, initially adapting to having a
machine in your body and learning to live with it. I mean, it really hasn't altered
things much. Initially it did, it sort of changed everything. But now I live a life
that is probably fuller than a lot of people's. ... Please, write that we're not
[chronically ill]!
5.4.3
Moving forward toward new goals
Having a positive view on life allowed most patients to develop future goals, ever mindful
not to plan too far ahead (Mr C). The desire for a meaningful existence framed their
anticipated activities. Two patients (Mrs D; Mrs E) looked forward to being well enough to
get to know and enjoy new or unborn grandchildren. Another patient (Mr A) wanted to
spend the rest of his days on his farm:
Mr A:
I’d be just as happy to die in the country here, or more happy to die here than to go
out in an old folks’ home for derelicts after 10 years.
Travel was a common goal already enjoyed by several patients. Patients had already taken
interstate (Mrs D; Mrs E; Mr F) and overseas holidays to Thailand (Mrs D), England,
America and Italy (Mrs G). There were no problems with travel insurance, or with the
129
checking of the ICD at airport security terminals. One patient (Mr F) wanted advice about
the overseas medical facilities so that he could plan a future holiday.
5.4.4
Summation: Appreciating and celebrating life
Appreciating and celebrating life reflects a shift in interest from arrhythmic risks, the
susceptible body and the ICD toward future possibilities. With time too precious to waste
and family and social obligations fulfilled, the patient looks forward to being involved
with productive and personally meaningful projects.
5.5
Accommodating the technology
THEME:
Accommodating the technology
Accommodation of the ICD is a transformational process. Comprehension of its
presence usually progresses from awareness of its physical properties, to a
growing sense of complacency, to an embodied accommodation. This process
suggests the ICD has existential significance and meaning related to the patient's
social context. For these patients, living with an ICD is embodied either as living
with a protective friend or, alternatively, living with an unwelcome intruder that
occupies the body and self. Each understanding is laden with the significance of
the ICD's technology on present existence and future possibilities.
5.5.1
Being protected: The ICD as friend
For these patients, accommodation of the ICD was both a physical and an embodied
process. Physical accommodation meant making sense of the presence of the ICD's leads
and hard generator within the body. The abdominal generator, in particular, presented as
a space-occupying object. In addition to wound pain, patients had to learn to avoid body
positions that compressed the ICD against adjacent organs and brought discomfort or pain
(Mr B; Mr C; Mrs D; Mrs G). Symptom abatement was almost imperceptible:
Mrs E:
It's sort of gradual thing. All of a sudden you realise that I was sleeping on my
stomach, and doing all the stuff I was doing before, and it just happens.
130
Time without problems and the development of trust nurtured a view of the ICD as an
internal ambulance or insurance (Mr A) that provided security (Mrs D) and confidence (Mr F).
Being shocked affirmed its ability to prevent an arrhythmic demise. More implicitly, most
patients implied their belief the ICD would not interfere In their dying or death.
Some patients likened the ICD to other objects that, in everyday life, simply assisted the
body or its activities, such as a wrist watch, artificial teeth and artificial limbs (Mr A; Mr F).
One patient (Mr F) saw his ICD as a necessary modification to his faulty body and part of
his anatomical system.
The inbuilt protection afforded by the presence of the ICD bestowed the authority for a
renewed appetite for life (Mrs D). Patients acknowledged that this protection facilitated their
increasing absorption in busy lifestyles, renewed sense of control and a greater
appreciation of life's pleasures (Mr C; Mrs D; Mrs E; Mr F). These transitions brought a
sense of complacency, but patients were still surprised that it was possible to forget, albeit
briefly, something as significant as the ICD.
Most patients eventually accepted and accommodated the ICD as a reassuring and trusted
friend. As with their other trusted, reliable and protective friends, the patient responded
by protecting the ICD's functions. They avoided body movements likely to cause friction
on the leads or undue pressure on the generator (Mr A; Mr C; Mrs D; Mrs E). They also
stopped using tools that might impede its function (Mr A; Mr C). Integrating and
embodying the ICD as a friend restored a sense of comfort and ordinariness to everyday
life.
5.5.2
Being occupied: The ICD as intruder
Two patients (Mr B; Mrs G) resumed active and productive lives, yet described a distinctly
different meanings accorded to the ICD. Each patient, in different ways, felt controlled or
programmed by the device and powerless to have its presence removed from their lives.
For one patient (Mr B) the ICD was a prick of a thing, a source of fear, dread and lost
control. Even on a good day, he was aware of its powerful, threatening capability:
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Mr B:
I've got no confidence in it at all — I just hate the thing. ... The whole time it's a
constant worry. I hate the thing, I really do, I hate it, better out than in, I reckon.
SR:
Have you discussed how you feel with the doctors?
Mr B:
Oh, they know. ... They sort of laugh it off. I keep telling them, "You can take this
device out, you can have it". ... They probably think I'm joking, but I don't like the
device. I would like it out. But they're not going to do that now ; they've spent too
much money putting it in.
His only foreseeable hope of having the device removed lay in the remote possibility of a
future heart transplant.
The other patient (Mrs G) ignored personal concerns about the cost and artificiality of the
ICD and reluctantly agreed to its implantation to provide her husband and family with the
security they desperately needed. She acknowledged that its security helped them to get
on with their lives, but was disappointed they could neither understand or accept her
dislike of the ICD and decision to refuse a future replacement of the current device. Factors
associated with her dislike included protracted post-implantation symptoms, the ICD's
negative impact on her perceived appearance and sexual appeal. She described it as an
unromantic box, something artificial inside that made her feel programmed. She also believed it
would thwart her desire for a quick and dignified death. Having experienced distressing
lung problems, she imagined a choking and coughing demise complicated by hideous and
repeated ICD shocks. Her recent hospitalisation for yet another chest infection affirmed her
concerns:
Mrs G:
And just after this last time, I just said to [Mr G] then that I wanted to go. I said,
"How many times do I have to go through this?" It's so undignified; it's so violent.
It is the violence I hate. ... I've still got an abhorrence of a violent death, and if
that's how I'm going to die - choking - it's very violent; it's horrible.. ... How will I
die? And how can I die? When I raised this with the cardiologist, he laughed ...
and said, "Oh, you'll find a way!". But it worries me. I don't want to get shocked!
and shocked! and shocked! and shocked! while I'm trying to die until it runs out of
shocks and then I'm allowed to die. I mean, what a hideous way to die. I have
absolutely no fear of dying. I have plenty of fear about the way I die - now - that I
didn't have before, but no fear actually of being dead, at all.
Neither patient had discussed the situation with their cardiologists or a counsellor. Each
patient doubted whether medical staff would understand or agree to discontinue the ICD
when so much time, money and effort had been invested in its implantation.
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5.6
Summative comments
The ICD is a relatively new treatment to reduce the risk of an arrhythmic sudden death in
susceptible patients. Patients in this study provided rich insights into their experience of
needing and living with this device. Figure 5.1 summarises the specific themes, aspects and
meanings in this thematic analysis of their experiential descriptions.
133
Fragile existence:
(i) risk of arryhthmias;
(ii) effects of investigations
(iii) waiting for ICD
Losing control of the body, being
controlled by others, feeling
overwhelmed
ICD offers hope for a more
secure existence
Vulnerability
Control or choice
Perceiving the ICD
Arrhythmia onset, being in
hospital, experiencing pre-ICD
investigations, being offered ICD
= disruption of one's life; fears,
doubts & isolation; learning
about ICD, preparing self &
hoping ICD will restore security
Arrhythmia risk and physical
body dominate focus; living
moment for moment
Being Disrupted
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ICD as a source of discomfort &
unknown potential power:
Will it work? How? What if?
Regained choice & independence;
occasional risks; restored meaning
Unknown capabilities of the ICD:
tentativeness & uncertainty limit
future plans
ICD insertion: wound soreness &
discomforts; minimal medical
advice; being home; adjusting to &
trusting the ICD; resuming usual
daily activities; experiencing ICD
shock(s); regaining confidence &
sense of security
Dual awareness: arrhythmia risk
and ICD's presence; being home
restores sense of identity
THEMES
Reconstructing Life
Being a patient: Themes, Aspects of Experience, Meanings
Bodily awareness
Meanings
Aspects of
Experience
Figure 5.1:
ICD prevents premature death, but
variant views on its role when it is
one's destined time to die
Usually, reduced awareness &
growing trust in ICD (protects, gives
authority & security to daily life)
But: ICD's power may also be a
source of fear & awe
Resumption of normality & control;
or
ICD dominates existence
Accepting ambivalence of living on
borrowed time; fulfilling personal
and societal obligations/ debts; redirecting the focus from the ICD
toward a meaningful future
possibilities; moving forward with
new goals
Making sense of the body-with-ICD
Appreciating & celebrating life
(ii) an unwanted intruder
(i) ICD = a trusted friend
or
(ii) Being controlled
(i) Being-in-control
or
(ii) ICD as threat
(ii) Constantly aware of ICD
(i) ICD: inbuilt insurance,
security
or
(i) Ability to forget the ICD
or
Embodied accommodation of
ICD as
(i) Necessary modification,
protector
or
(ii) That which is dreaded
Accommodating the
technology
The disclosure of these themes structured a detailed description of the nature and meaning
of living with an ICD, as understood through the collective lived experience of being a
patient.
The following summative comments reflect on this understanding. Being susceptible to
ventricular arrhythmias threatens the physical body and disrupts taken for granted
qualities of everyday existence. The patient's vulnerable body is further challenged by
multiple medical procedures, prescribed drug regimes and monitoring procedures.
Implantation of an ICD offers the hope that life might regain some sense of security.
Despite expert medical and nursing care in the perioperative period, patients receive
minimal professional support to cope with the uncertainty, protracted symptoms and need
for information in the early recovery period. The resumption of everyday activities
nurtures a growing trust in the ICD. The experience of being shocked affirms the body's
vulnerability, but also reassuringly confirms the reliability of the ICD's otherwise invisible
functions.
Contrary to professional views, living with an ICD is not experienced as living with a
chronic illness. Instead, it is an evolving existence of reconstructing life in productive and
personally significant ways. Time, personal philosophies and, for most patients, trust in
the ICD helps to restore a sense of routine and normality. Appreciation of the ICD's value
contributes to the celebration of meaningful future possibilities. The focus of awareness
shifts from the ICD and life and death issues. Questions, such as, "Will I live?", "What will
life be like with this device?", "How long will I live?" subside as the focus moves to making
meaningful plans and the desire is to answer the question, "How can I live my life to the
full?". Contemplating the question, "How can I die when it is my time?", most patients
believe the ICD will prevent their premature and untimely demise, but not interfere when
it is their time to die. However, the ICD is seen as an intolerable presence when patients
believe it will interfere or prevent a peaceful and dignified death.
Being a patient means experiencing the ICD either as inbuilt protective friend, or as an
unwelcome intruder. For most patients, the ICD's presence diminishes their vulnerability,
increases their sense of control and facilitates restoration of a sense of normality. Aside
from its physical and functional aspects, the ICD is accommodated as a friend that will
promptly respond when needed. The ICD's protectiveness thus makes a meaningful life
and existence possible.
135
Conversely, experiencing the ICD as unwelcome intruder means living with an awesome,
omnipresent technological power. In this context, the ICD's power, presence and
potentiality controls and compromises existence, exacerbates the patient's felt vulnerability
and thwarts their existential possibilities. Finally, being a patient means acknowledging
how living with an ICD is a phenomenon experienced by all the family.
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CHAPTER SIX
BEING A PARTNER
6.1
Introduction
This chapter describes the partner's experience of the patient's arrhythmic events, initial
hospitalisation, pre-ICD wait and subsequent recovery after ICD insertion. The partner's
lived experience, similar that of the patient, comprises the themes of Being Disrupted: The
distressing near loss of the patient, Reconstructing Life, Appreciating and Celebrating Life, and
Accommodating the ICD. Intermeshed into each theme are elements of the partner's
embodied vulnerability and perceived responsibility toward the patient and others.
Through these themes this chapter discloses how living with an ICD for the partner
culminates in their comprehension of the ICD as being a protective insurance policy.
6.2
Being disrupted: The distressing near loss of the patient
THEME:
Being disrupted: The distressing near loss of the patient
Being disrupted and distressed reflects the upheaval, anxiety and changes to the
partner's everyday world when the patient survives the onset of a life-threatening
arrhythmic event. In contrast to situations where others rescue the patient,
partners with a direct involvement experience additional doubts and insecurities.
Exhausting hospital visits, family workloads, the paucity of professional support
and a sense of isolation intensify the partner's distress. The promised security of
the patient's ICD offers the partner some respite but they nevertheless see
themselves as responsible for the patient's future well-being. They closely monitor
the patient who endures the pre-ICD wait at home. They also try, with limited
success, to acquire sufficient information about arrhythmia problems and the ICD
to inform their support of the patient in their recovery. The anxiety, apprehension
and uncertainty wrought by the patient's arrhythmic event transforms the
partner's present and conceivable future reality.
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6.2.1
The patient's survival from a sudden cardiac death event
Each partner's life was distressingly disrupted and forever altered by the patient's survival
of life-threatening cardiac arrhythmias. In two instances (Mr D; Mr G), the partner was
directly responsible for the patient's survival. For other partners (Mr C; Mr E; Mrs F), this
responsibility fell to bystanders or hospital staff. Distress, worry, workloads, weariness
and isolation typified the partner's reality.
6.2.1.1 Being distressed: Rescuing the patient
Two patients (Mrs D; Mrs G) suffered a cardiac arrest at home. In each instance, the
partner who was directly involved in ensuring the patient's survival, had initial doubts
about the effectiveness of their actions. Being a rescuer and faced with the onerous
responsibility for the patient's survival, had a long lasting significance. This responsibility
was eased, but was not abolished, by the patient's later receipt of an ICD.
One partner (Mr G) found his wife in a cardiac arrest and realised there was no time to
wait for an ambulance:
Mr G:
The shock to be the person who gives the assistance, the first aid, you know, having
to establish for instance, no pulse, no breathing. What will I do now? It's no use
ringing the ambulance.
Instead, he immediately drove her to a nearby hospital where he watched the staff's
successful resuscitation efforts. Mrs G remained unconscious for several weeks and
suffered multiple physical complications. Mr G's daily visits to the intensive care unit
included helping staff with Mrs G's physical care, while also emotionally supporting their
adult children. With his siblings living overseas, he had few sources of social support for
himself and sometimes felt that he didn't have a shoulder to cry on. Following her recovery,
knowing that his wife had the ICD offered him and their family much needed security, but
five years on they still fear a recurrence of her collapse:
Mrs G:
I don't think we would have got on with life as a family if I didn't have [the ICD].
The kids were extraordinary at first. They used to panic: "It's 10 o'clock Sunday
morning [the time of the arrest]"! And to this day they still panic if I don't answer
the phone ... or if I'm not home when I'm meant to be. So it's still there a little bit,
isn't it?
Mr G:
Of course, you're on tenterhooks the whole time. I'm still today not relaxed, and
although you come to terms with it ... you can't forget it, and you can't pretend
that it doesn't exist. You might try to push it to the back of your mind, but it
doesn't go all the way back.
138
The other partner (Mr D) vividly recalled finding his wife slumped on the floor —gasping,
prior to stopping gasping totally. After what seemed like a long delay, ambulance staff
arrived and took over the resuscitation efforts. His wife was semi-conscious by the time
they transferred her to hospital. His initial elation of beating the hand of death was
tempered by doubts about possible brain damage:
Mr D:
I was exhilarated more than anything else, ... on an extreme high because you've
saved a life. ... But there was also this underlying feeling of doubt about the
patient's long-term lot or performance. ... It's always on your mind: excitement on
the one hand that you have beaten the cause of death, and on the other hand, would
you be thanked for it.
He resolved this ambivalence by deciding to have no misgivings, no self-pity and no
recriminations about his actions. After her recovery and return home he also stayed in her
company until her return to work, thus reinforcing her view of him as being her bodyguard.
Several weeks later she received an ICD.
6.2.1.2 Being relieved: When other people rescue the patient
Three partners (Mrs C; Mr E; Mrs F), although also distressed, were at least spared the
awesome immediate task of rescuing their spouse from a cardiac arrest. They were also
spared the doubts and dread that confronted the partners who had to perform this task.
One partner, Mrs C, was notified by police soon after her husband's resuscitation from a
cardiac arrest in a local street. She was prepared for the worst on the way to the hospital. He
was still unconscious. Although doctors reassured her he was fine they explained that he
required immediate transfer to a Melbourne hospital for intensive care treatment. A small
stroke complicated his recovery and delayed his return home. He then waited another
three months before receiving an ICD.
A second partner, Mr E, was overseas on a business trip when notified of his wife's heart
attack and subsequent cardiac arrests. He returned home a few days before her discharge.
He took leave from work and, with the help of family members, managed the meals and
housework. Two weeks later, at her insistence, he returned to work. He seldom discussed
his concerns in the weeks prior to the implantation of her ICD, but she often woke to find
139
him checking her breathing. The value of the ICD in easing his concern became fully
apparent two years later when an ICD tester revealed a fault with her device:
Mrs E:
And one day I just tested it and [the tester] said "Ring your doctor", you know. A
little red light came on. It gave me a fright. My husband panicked then. That was
the only time I saw him really panic.
The third partner, Mrs F, accompanied her husband when he attended the local emergency
department for what he referred to as fluid on the lungs. Within minutes, she observed his
cardiac monitor tracing going into a straight line and, recognising a cardiac arrest, knew he
was dying. She recalled the staff being very much in control. They knew what to do and timed
it very well. He quickly regained consciousness and was transferred to the intensive care
unit of a major Melbourne hospital. Numerous investigations culminated in his receipt of
an ICD prior to his discharge three weeks later. Mrs F used this time to collect a range of
information about ICDs and medications because she felt so tremendously responsible for the
continuation of [his] aftercare.
6.2.1.3 Being exhausted
Besides the emotional distress of their near loss, each partner described the exhaustion
associated with their spouse's period of hospitalisation. Hospital visits had to be organised
to fit in with work (Mrs C), care of young children (Mrs B; Mrs C) and household
responsibilities (Mrs B; Mrs C; Mr D; Mr G). Partners (Mr D; Mr G) who lived nearby
visited almost daily. Other partners (Mrs B; Mrs C; Mr D; Mrs F), who faced a round
journey involving two to seven hours of driving, visited less frequently. The duration and
nature of the patient's hospitalisation compounded the exhaustion. Some patients (Mr B;
Mr C; Mrs G) were hospitalised for at least six weeks, with most of the time spent in an
intensive care unit.
Patients (Mrs C; Mr D; Mrs E) discharged after their initial arrhythmic event often required
one or more readmissions for diagnostic tests, other medical treatments and ICD
implantation. In the midst of their exhaustion, partners had to cope with a body of
complex information related to the patient's health problems and medical tests. It was a
period when they coped by living on adrenaline (Mrs F). Only later did they realise the full
extent of their fatigue:
Mrs B:
I was travelling backwards and forwards. I had to do the shopping and pay the bills,
and then go back to Melbourne again to be with [Mr B]. ... I didn't really think
140
about it at the time. You just do it, you know. ... It's not until afterwards that you
think about it. ... And you think, gee, seven weeks passed - that's a long time, you
know, to go through the waiting, the not-knowing, and then the surgery.
6.2.2
Waiting for the ICD: Anxiety, apprehension, anticipation
Partners experienced the patient's pre-ICD waiting period as a time of anxiety and
apprehension. For some partners (Mrs F; Mr G), the patient's continued stay in hospital for
the wait provided easier contact with nursing staff and to a lesser extent, medical staff.
Even so, emotional exhaustion and general tiredness made it difficult to understand
explanations about the patient's situations, procedures and ICD. For other partners,
distances between home and hospital prevented hospital visits (Mrs A) or involved
lengthy and exhausting travel (Mrs B).
In situations where the patient's pre-ICD wait was spent at home, partners (Mrs C; Mr D;
Mr E) endured the additional burden of feeling totally responsible for protecting the
patient's well-being. None recalled receiving any specific advice from staff about
recognising or managing potential problems. Their anxiety and apprehension meant being
vigilant for any hint of a problem in the patient's health, such as increased tiredness (Mrs
F), malaise (Mr D; Mrs E), or breathing difficulties during exercise or while asleep (Mrs B;
Mrs C; Mrs E).
Partners also invested considerable efforts in supporting the patient's emotional and
physical pre-ICD preparations. These efforts, sustained by hope, focused on the scheduled
date of ICD implantation. Any delay in the surgery was thus very disappointing. One
patient (Mr C) faced an additional wait when doctors removed a newly implanted, but
ineffective ICD. In addition to waiting for the hospital to obtain a higher-tech model (Mr C),
a wound infection delayed device implantation. His partner recalled the disappointment:
Mrs C:
That was the worst period of time, when the first defibrillator wouldn't work.
You've built yourself up to this, and then you go in and find that they put it in and
took it out again.
Partners also recognised and tried to minimise the impact of the waiting period tension on
other family members. Their comments and explanations were kept at a simple level,
sometimes understating the seriousness of the patient's situation (Mrs B; Mrs F).
Maintaining a sense of routine was also important (Mrs C). However partners were also
141
aware the patient's situation might quickly change. They thus had contingency plans to
ensure the care of children and pets (Mrs B; Mrs C), leave from work (Mrs C) and, if
necessary, overnight accommodation (Mrs B).
Partners tried to be strong and put on a brave face. It was, however, a time of considerable
isolation. No partner had the chance to share and validate their apprehension and
concerns with others who would understand (Mrs A; Mrs B; Mrs C; Mrs F; Mr G).
6.2.3
Being responsible: Learning about the ICD
Three partners (Mr D; Mrs F; Mr G) were present during the doctor's explanation of the
ICD and related surgery. One partner (Mr G) especially valued the reassurance promised
by its life-saving features:
Mr G:
[He] explained the procedure and what it was, the padding they had to put around
the heart, the two pads, in front and back I think, and what this thing did. He also
said there had only been [a few] cases in Australia at the time. ... I certainly saw it
as a lifesaver. ... a means of giving me my wife back, as simple as that, some
security. ... I didn't want to have to pick my wife up off the ground again.
In contrast, partners not present during the doctor's explanation found it even more
difficult to get information about the ICD. There were also several criticisms about the
paucity or ambiguity of information on living with the ICD and the patient's expected
recovery (Mrs A; Mrs B; Mrs C; Mrs F). Staff other than the implanting cardiologist often
could not answer related questions (Mrs B; Mrs C; Mrs F). It is, however, possible that
informal conversations conveyed this type of information, but it may have been
overlooked or not understood. Partners (Mrs B; Mrs C; Mrs F) realised in hindsight that
stress and fatigue impeded their concentration. Comprehension of complex information
was less difficult when staff provided printed explanations, explanatory diagrams or
showed a replica of the ICD (Mrs E; Mrs F). Even so, gaining an understanding still
required repetition and time:
Mrs F:
I actually picked up everything I could ... trying to absorb it. ... It's amazing how
much one does absorb when one's emotionally a bit out of kilter I think. But there
are some things you don't retain. And I did have to keep going back and looking at
things.
Partners could not rely on the patient to provide all the answers. Some patients (Mr A; Mr
B; Mr E) limited or filtered the information they passed on. Partners also realised that
142
patients may not have been able to accurately recall the content of the doctor's
explanations:
Mrs C:
I get what emphasis he puts on it ... and you know damn well that's perhaps not
what the doctor meant, because he's drugged to the eyeballs and depressed or sick,
or whatever. ... One of the hard things is that you haven't got access to the doctor.
Unlike partners elsewhere (Simons, Cunningham & Catanzaro 1992), there was no
mention of partners being offered a chance to learn or update life-saving skills. The adult
children of one patient (Mrs E) saw it as their responsibility to undertake a first aid course.
For the partner, waiting for the ICD involved being disrupted, distressed, exhausted and
isolated. The ICD's lifesaving functions reassuringly promised hope, but partners had
many unaddressed concerns and questions about its anticipated impact for the patient's
life.
6.3
Reconstructing life
THEME:
Reconstructing life: reclaiming normality
Reconstructing life reflects the partner's reality when the patient returns home
after ICD implantation. In contrast to the anticipated respite and relief, awesome
responsibility for the patient's safety and well-being dominates their existence.
Unlike the patient, the partner experiences home as a place of considerable anxiety
and insecurity. Time, together with an emerging belief, trust and reliance in the
ICD helps to restore a redefined sense of normality.
6.3.1
Being relieved but anxious: The patient's return home
Relief, optimism and hope marked the patient's return home. Such was its significance that
one partner (Mrs F) took photographs to keep a record of this event. There was an optimistic
belief that family life would regain some sense of normality (Mrs B; Mrs C; Mrs F):
Mrs B:
Given that he was a bit sore, life went on pretty much as usual. We were all back
home. Yes! I think it was probably relief that your life was finally back to normal,
that we were a family again, that we weren't separated by him having to be in
Melbourne.
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The partner's relief was short-lived, because it took time to learn to trust the ICD. Doubts
about its reliability and effectiveness contributed to the anxiety and insecurity all partners
experienced in the first few weeks. Whereas the patient saw home as a safe place vital to
recovery and a restored sense of identity, for the partner it signified vulnerability and
anxiety. Home was where a partner felt solely responsible for the patient. The sense of
home as a vulnerable place usually dissipated over time and as the patient became more
confident in the ICD's functions. For two partners (Mr D; Mr G), however, home was a
vivid reminder of their vulnerability. The kitchen (Mr D) and the garden (Mr G) provided
constant reminders of the date, day and time of frantic efforts in rescuing the patient after
the cardiac arrest. No partner had previously discussed the transformed understanding of
home.
The partner's vulnerability was also exacerbated when distance or location reduced their
accessibility to local emergency services (Mrs A; Mrs B; Mrs C). Some rural partners (Mrs
B; Mrs C) provided the ambulance service with information about the patient's ICD and a
map of the nearest routes to the family home.
6.3.2
Protecting the patient
Such was the partner's felt responsibility for protecting the patient that, at least in the first
few weeks, they remained vigilant and ensured the patient was seldom if ever left alone
(Mrs B; Mr D; Mrs E; Mrs F; Mr G). One partner (Mrs C) described it as a parental
responsibility:
Mrs C:
In a sense it's like having another child that you feel responsible for. ... You don't
rely on [the patient] as much as you might have done for a healthy person. You do
feel more responsible. ... It's only natural that you worry, and I accept that. But I
would never tell [him] not to do something.
Protecting the patient meant learning about living with an ICD, but with limited sources of
information. There was little professional guidance before the patient's return home.
Partners praised the explanations in the manufacturer's information booklet regarding the
ICD's lifesaving features and need for regular checks. However, the booklet offered limited
advice on what happens when it does its job, or the pacing (Mrs B), the patient's recovery (Mr
D) or preparations for dental care (Mr D). It was one partner's (Mrs A) sole source of
information. She noted how its scary comments about the ICD shock left her afraid she
might set something off if she touched her husband's shoulder near his device. Like patients,
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partners were reluctant to disturb busy cardiologists with day to day problems. Efforts to
become better informed included reading related medical papers (Mr G) or magazine
stories about other recipients (Mrs A; Mrs B) and seeking advice from nursing friends (Mrs
E; Mrs F).
Partners had little understanding of what to expect regarding the patient's recovery. It took
time, as well as trial and error, to make sense of the patient's many symptoms. Such
symptoms included lethargy, chest soreness, vague pains, pallor, nausea, sweats and
anxiety attacks. Patients seldom required medical intervention, but their symptoms
hampered their recovery. Partners learnt that reassurance, praise, relaxation exercises,
distraction and humour eased the intensity and duration of most symptoms (Mrs B; Mrs C;
Mrs F). Ongoing health problems took a heavy toll (Mrs B):
Mrs B:
For nearly twelve months solid there was almost always something wrong with
him. ... He just didn't seem to have a break from being sick. ... That can be
debilitating for yourself, because you can't see a light at the end of the tunnel. ...
It's frustrating because you can't make it better, you do the best you can, but as
soon as you get him over one thing, something else that happens.
This partner's enrolment in a counselling course provided her with an additional range of
relaxation and diversional techniques. Use of these techniques, combined with other
motivating and cajoling strategies, gradually diminished his depression and sense of
despondency:
Mrs B:
I can't really say what I would do in his situation. You know, I might ... sit there
and mope and feel sorry for myself, too. ... You can't let them do that. You can't
let them give up.
The partner's confidence increased as the patient's symptoms abated and they resumed
various physical activities without the occurrence of any adverse events. Partners tried to
encourage the patient to do various activities on their own (Mrs A; Mrs C; Mrs F).
6.3.3
Being protected: Trusting the ICD
Partners conceptualised the ICD as similar to a permanent pacemaker, but with the added
ability to use an internal shock to treat an arrhythmia and thus protect the patient. Only
one partner (Mr G) knew it could deliver more than one shock. Another (Mrs B) became
aware after witnessing her spouse's receipt of multiple shocks.
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Some partners (Mrs B; Mr D) were relieved that the ICD's presence obviated the patient's
need to continue medication with toxic side-effects:
Mr D:
If you know that chemically your life is a wreck without that protection and life's
good with it, there's no comparison between ... before and after.
Partners' early fears and apprehensions of potential problems reduced as confidence in the
ICD to protect the patient grew, to the point where they felt able to positively encourage
the patient's recovery. Some partners also accepted the patient's need to take the occasional
risk (Mrs C; Mrs F). As noted earlier, one patient (Mrs E) noted how her husband
supported her interstate holiday two months after her cardiac surgery and ICD
implantation. Another partner (Mrs C) recalled her concern as she watched her husband
chase some escaping sheep:
Mrs C:
I see him running down the hill, and I'm thinking, oh well, it looks as if today's the
day. (laughs) If anything's going to happen, it will happen today. If he shouts
abuse at the dog one more time! And I think, well, at least he's going to die happy.
Relinquishing the habit of protectiveness was much harder when the patient had doubts
about the ICD's reliability. One partner (Mr G) who had been involved in his wife's rescue
noted how her ICD eased his concerns. Nevertheless, he could not totally rely on the
device. As he noted, the information booklet revealed hundreds of ways it could be stuffed up
or deprogrammed by environmental hazards. Such was his dread that whenever they were
any distance from their home he checked the location of the nearest hospital.
6.3.4
Supporting children
Partners (Mrs B; Mrs C) were sensitive to the impact of the patient's situation on young
children in the family. Efforts to minimise this impact included an early restoration of a
sense of routine and stability.
One partner (Mrs B) simply explained to their young children that their father's device
would help his heart and reduce his tablets. Several months later, however, the children
saw him being distressed at the time of his receipt of multiple shocks and the shared fear
of both parents at what was believed to be the patient's imminent death:
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Mrs B:
They said to us they thought Daddy was dying, and I said to them, "Well so did
Mum. Mum thought the same thing, and so did Dad, but that's not the case". And
we virtually explained to them what the doctors had explained to us.
Thereafter, the children remained wary of his ICD, with the youngest child referring to it
as the zappy thing (Mr B). Although seldom mentioned, their concerns were evident:
Mr B:
They've seen the device go off, ... The oldest sort of understands. My boy, he
doesn't like the device either, 'cos he's seen what it does and all that. He calls it the
'zappy thing'. ... He worries about it: "You shouldn't drink beer, you've got to
think of your zappy thing", "Don't do that, think of your zappy thing". "Leave me
alone, kid!" [laughter] It has affected them.
Their older daughter doesn't say much about her father's situation, but readily helped in the
care of her siblings whenever her father was ill.
The teenage daughter (Ms C) in another family offered additional insights. She had grown
up knowing her father had heart problems. She no longer saw his hospitalisations as a big
deal (Ms C) and realised the need to stay with friends. She had learned not to worry:
Ms C:
I just figure that if I worry, it's not going to change anything, and it's just going to
make everyone else upset if you're there. So you just act like you always do and try
not to dwell on the fact that they're in hospital, and they've got a heart problem. ...
There's no point on dwelling on it, because it's not going to change.
Her mother agreed that her daughter usually appeared to cope well. Despite her brave
face, however, unexpected events exposed her vulnerability. Having been told to hurry
home one afternoon, Ms C thought there was a problem with her father. She cried with
relief when she saw he was safe and well. Her mother reflected: You think everything's okay,
but it is not far from the surface, obviously (Mrs C). Ms C understood the nature of her father's
ICD and, like her mother, saw it as insurance policy and a relief to have it there (Ms C). She
seldom discussed his health problems or her reactions, mostly because friends or teachers
would not understand.
Being a partner meant being mindful of the impact of the patient's experience on their
children. Each spent as much time as possible offering realistic but simple explanations
and reassurances. Children seldom took up invitations to discuss their feelings or
concerns, yet still seemed to develop a mature insight and resilience beyond their young
age. Their comments and responses to anything that threatened the patient's health
revealed their vulnerability and a potential sense of loss.
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Being a partner also meant being aware of how family tensions and frustrations manifest
in frayed tempers and sometimes, the children's annoying behaviours. They thus faced the
challenging task of easing these tensions, restoring harmony and supporting their children,
while also attending to the patient's need for support and understanding.
6.3.5
Supporting others
Being a partner meant supporting friends and colleagues with simple reassuring
explanations of the patient's problem and ICD (Mrs B; Mrs C; Mrs F). Reference to the use
of defibrillators in various television programs helped people to better understand the ICD
(Mrs C; Mrs F).
One partner (Mrs C) noted how news of the patient's collapse and ICD spread quickly,
with their small community rallying with various forms of support and practical help,
including child minding. Although other people volunteered to keep the patient company
in the partner's absence, they also expressed concern about being present if the patient
suffered another arrhythmic event. In recognition of this support and concern, this couple
used various public venues to explain the ICD, offer reassurance and to provide simple
first aid advice.
6.3.6
Being isolated and vulnerable
Each partner nominated the patient as their primary support person, but this compounded
their felt isolation. Keen to minimise the patient's worries they adopted an air of reassuring
confidence and avoided expressing their emotions and responses (Mrs C; Mrs F):
Mrs C:
I tend to bite my tongue a lot more now, for the sake of what I call peace, because
[he] does get upset. ... I just back off all the time.
Despite the support they provided for the patient, family and community, there were few
avenues of emotional support for partners themselves. Other than the patient's busy
cardiologist, partners had no access to a professional person who could offer advice about
day to day issues about living with an ICD or offer additional support to their children.
Most local doctors knew little about the ICD and offered little practical support. Local
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doctors who acquired additional information about the ICD provided practical and
emotional support to one partner (Mrs C):
Mrs C:
I think the support's there, but you probably need to go looking for it. I'd like to
think it's there. I get mine from the local doctor, and they're very supportive. You
can go down and have a cry with them. And I've done that, off load, and say
"Look, I'm frightened, I'm just scared stiff. I don't want to lose another husband".
Partners had no access to other patients with an ICD or their partners. They shared the
patient's felt sense of isolation and reluctance to seek support from friends or colleagues. In
part, they did not want to disrupt other people's lives (Mrs F), but they also lacked the
energy needed to explain the patient's situation to people who knew little about cardiac
arrhythmias or the ICD (Mrs C; Mrs F). In part, because they coped by suppressing their
emotional responses, partners were also reluctant to expose their felt vulnerability to
others (Mrs C; Mrs F; Mr G). Typically, this suppression of emotions continued long into
the patient's recovery. As noted earlier, tensions then arose when the patient tried to
discuss future plans that openly acknowledged an anticipated early demise. Some partners
(Mr E; Mr G) saw such discussions as morbid and quickly changed the subject. Another
partner (Mrs C) and her husband avoided such issues and just got on with their lives.
6.3.7
Protecting the self
Partners realised how months of exhaustion, self-restraint and repressed emotions posed a
risk to their own health. Coping strategies included regular physical exercise, ample rest,
and vitamin supplements (Mrs B; Mrs C; Mrs F). Visits to friends (Mrs B) and workplace
activities (Mrs C) provided a safe venue for releasing pent-up emotions:
Mrs C:
I know I've got to look after myself too. ... I know that while I've got this stress
I've got to do something to offset it. And so school is a good screaming, yelling, and
slamming up and down place for me to be! (laughs) ... You get yourself out of this
environment, completely away from it all.
Partners also used various distancing strategies to ease their felt vulnerability. They
avoided being drawn in (Mrs C) and overwhelmed by the seriousness of the patient's
situation (Mrs B; Mrs C; Mrs F):
Mrs C:
I have to keep myself up from it, if you like, umm, so I don't get too drawn in by it
all.
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Distancing and suppression of their own emotional responses enabled the use of other
strategies. One partner (Mrs B), for example, reminded herself that there is no point in
panicking about anything unless it actually happens. This belief supported her husband during
his many anxiety attacks. Distancing also allowed another partner (Mrs C) to objectively
consider non-cardiac reasons for his symptoms:
Mrs C:
Every little thing that happens to him healthwise he's taking in and thinking,
"Does this mean my heart is getting weaker" or "Am I going to have another
stroke, or this or that?". All that's important to him, because it's his life on the line.
... But a lot of those things happen to me too, and it's just part of your body ageing.
So I just tend to ... not listen to his complaints as much as perhaps I should.
Restoring and maintaining a sense of normality often saw the partner redirecting family
conversations to avoid recurring discussions of the patient's problems, health or symptoms
(Mrs B; Mrs C; Mrs F):
Mrs B:
You don't sort of sit there every day and think, you know, [he's] terminal and this
is the end, sort of thing. You just go along as per normal every day.
Patients sometimes misinterpreted the intent of their partner's approach. Being accused of
displaying a lack of understanding, empathy or sympathy left some partners feeling guilty
(Mrs B; Mrs C). The partner's interests outside the home, or their employment, were other
sources of guilt (Mrs B; Mrs C; Mr E). For example, even though employment provided
financial, career and social benefits, it incurred a sense of divided loyalty in the partner if
the patient appeared unwell (Mrs C; Mrs E):
Mrs C:
My dilemma is always how much to give [work] and how much to give home.
When should I take leave and stay home with [Mr C], which I've done, or how
much to let him be alone. Sometimes I feel guilty that I'm not back at [work] when I
should have been.
Other forms of protecting the self used by partners included distractions such as
gardening, humour and relaxation exercises that eased their tension and stress (Mrs B; Mrs
C). In addition, partners also realised the importance of accepting the praise and support
of others. Such praise nourished the partner's inner strength and resilience (Mrs B; Mrs C;
Mrs F):
Mrs F:
I think when we see in your life — what seems like a situation where mentally and
physically you don't feel you're coping well, or you feel terribly low for all sorts of
reasons, and then somebody else picks you up, without realising it, sometimes and
somehow something happens to you. You feel better, you start going forward again,
and you start building strength. And often it is just somebody ... who consciously
or unconsciously, you feel something, apart from the verbal, that somehow they've
got faith in something that's in you.
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In summary, because it takes time to fully trust the ICD the partner's experience of
reconstructing life is framed by the onerous responsibility of protecting the patient.
Reconstructing life also means being responsible for supporting young children, friends
and colleagues. It also means minimising exhaustion and vulnerability to maintain their
own well-being.
6.4
Appreciating and celebrating life
THEME:
Appreciating and celebrating life: Moving on
The protective security afforded by the patient's ICD produces various
possibilities for the patient, partner and their family. The restored sense of
normality and resumption of busy routines diminishes the partner's awareness of
the ICD and the patient's arrhythmic risks. This transformation makes it possible
to reflect on the value of the present and, in appreciation of the ICD's presence,
celebrate life and make plans for a meaningful future.
6.4.1
Being able to forget the ICD
The patient's continued recovery returned some sense of routine and normality for their
partner and family. It was, however, a redefined normality framed by varying degrees of
uncertainty. For example, despite his wife's resumption of a full-time busy career and the
protection afforded by her ICD over the preceding five years, Mr G doubted if their life
would ever regain the comfort it had prior to her arrhythmic events:
Mr G:
It has been ... a long process. I mean, five years [and] we still haven't reached a
comfortable stage. ... Is there a comfortable sort of level where you go back to
normal? Do most people reach that normality?
The passing of time and trust in the ICD, in most situations, gradually eased the partner's
uncertainty and doubts (Mrs C; Mr D; Mrs F). As with some patients, the distractions and
complacency evoked by an increasingly busy life brought the surprising possibility of
forgetting the ICD:
Mrs F:
Well, what I've found is that because life has its normal demands, is that I might go
several days without thinking about [Mr F] having the defibrillator. Except, I
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might look at him sometimes, and think "Is he okay?", "He looks quite pale; he's
dosing off; I suppose that's okay, he's had a fair day's work"Mr F:
Oh, I get drowsy from time to time-
Mrs F:
But then sometimes when we're going out, I'll be so busy with all the things I have
to do, depending on where we're going, and then I suddenly say to him "Have you
got your [ICD] ID?" (laughs) — when we're halfway to where we're going!
(laughs). So, I don't know what that indicates. I find that I fluctuate.
Complacency and being able to forget the ICD were easily disturbed situations that again
exposed the patient's and thus the partner's vulnerability. Such instances included times
when the patient looked unwell (Mrs F), or received multiple shocks (Mrs B) or expressed
the desire to have the ICD deactivated or removed (Mrs B; Mr G).
6.4.2
Planning a meaningful future
The resumption of a busy life and the passage of time made it possible for the partner to
reflectively appraise present and future existence, as an individual and as a couple. As Mr
G noted, the patient health situation transformed the partner's personal views of what is
important in life:
Mr G:
[Mrs G's collapse] jolted a lot of preconceived ideas ... about things, and life and
situations. It makes you look at life in a different way, and what is important, and
what isn't.
Typically, having resolved to organise the family's financial and legal affairs (Mrs B; Mrs
F), partners determine to get on with life (Mr D) and avoid wasting time on trivial or
inconsequential issues (Mrs A; Mrs B). Mrs F's comments capture the desire to resolutely
move forward and celebrate life in meaningful ways that mutually enrich present and
future possibilities:
Mrs F:
I thought we are getting older, this has happened, we had better get a lot of things
in order. ... Perhaps we might have to live somewhere where we have more
immediate help. ... There were a lot more things that I felt we had to get in order in
our lives, bit by bit, when [Mr F] was better ...
Mr F:
A lot of tidying up to be done-
Mrs F:
There were lots of things. It brings home, I think, the reality of one's mortality.
And ... you think of the other people who will be here after you have gone, and ...
therefore, you must leave your life in some sort of order ...
SR:
So, it is a time of stock-taking as well?
Mrs F:
Yes, I think it is ... Something like this brings it into sharper focus, once and for all.
...
SR:
If I was to ask you [Mrs F], what being a partner has meant with [Mr F] having his
defibrillator, any thoughts come to mind?
152
Mrs F:
A feeling of responsibility that he continue to get better, that he go forward, that we
even ... take some risks; that we feel that life has got a lot more to offer and that we
don't become static; that we keep on living until the time is right for us not to be
here. That's what I think, that we go forward together, and do things, discuss
things, be part of other people's lives, and maybe have our rests, when we're weary,
but not to give in; we've got to keep going.
In summary, appreciating and celebrating life thematically reflects how the distractions of
everyday life and a redefined sense of normality diminish the partner's awareness of the
patient's health problems and ICD. The focus shifts from earlier day to day issues of
reconstructing life toward a determined desire to mutually constitute and celebrate
meaningful future possibilities.
6.5
Accommodating the ICD
THEME:
Accommodating the ICD: Being protected
Accommodating the ICD metaphorically describes the contribution and
integration of the ICD's protectiveness in the partner's everyday life. Being
protected means making sense specifically of the ICD's shocks to the patient and
more broadly, the ICD's value for easing the partner's awesome responsibility.
Threats to the partner's restored sense of hope and security arise if the patient
wants the ICD deactivated or removed.
6.5.1
Making sense of ICD shocks
Partners knew the ICD would not cure the patient's arrhythmic risk. Nevertheless, being
able to trust the ICD's protection of the patient diminished their vulnerability and
perceived responsibility for the patient's welfare. The patient's receipt of one or more ICD
shocks often sharply interrupted the partner's sense of complacency with yet another
reminder of the patient's vulnerability.
In contrast to partners not present when the patient was shocked (Mrs A; Mrs C; Mr D),
those who witnessed the patient being shocked (Mrs B; Mr E; Mr G) endured initial alarm
and fears about the patient's risk of another collapse. Mr G revealed how his sense of dread
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dissipated with his wife's speedy recovery after being shocked. Her recovery affirmed his
reliance and trust in her ICD:
SR:
[Mrs G] was saying that the only time the defibrillator has gone off was one day
[when] you were standing beside her. Do you remember it?
Mr G:
I sure do! Well, I knew that she was uncomfortable, because she wasn't looking too
well ... [and] had been sick for a few days before that with a bad cold. ... And when
it did happen, you didn't quite jump up in the air, but I think you did give a bit of a
jump, you sort of stiffened up, and then you had to sit down on the kerb. Her colour
was ashen, so to speak, all the blood was drained from her face ... and then you just
came good.
SR:
(To Mr G) That must have frightened you.
Mr G:
Oh, yes, I was back to square one. Okay, the defibrillator went off, it worked. But
what if it starts again? Because the one thing that we were told was that it does it
for 7 times, and then that is it, you know. ...Oh, yes, it works. ... And I stood there,
holding my breath, waiting for the next one. I'd rather there weren't a next one ...
for sure, because if it happened, there must be a reason for it to come in. ... Perhaps
that's why I've got a different idea about the defibrillator than what [Mrs G] has,
because to me ... it's going to do the job that otherwise I would have to do again,
and I don't want to go through it again.
SR:
So, it takes some of that responsibility off you?
Mr G:
Well that's right. If there is an arrest again and there is a machine there now that is
going to do the work, I don't have to pick her off the ground ... I don't have that ...
responsibility, that worry.
In comparison, Mrs B described the anguish, anxiety and fear of seeing her husband
receive multiple, really horrific and painful shocks. Unaware the ICD could deliver more
than one shock, she felt helpless to prevent what they each believed was his imminent
death. Aside from his obvious distress, the repeated shocks engendered a long lasting and
devastating loss of confidence in the ICD, a dread of future shocks and anxiety-related
panic attacks. She recalled that he did not allow her out of his sight for a good 12 to 18 months
(Mrs B). Regardless, Mrs B doubted that even if she had the means, she probably would
not have deactivated the ICD, just in case it still offered him some life-saving protection:
Mrs B:
It was pretty scary at the time. You sort of feel helpless because there is nothing you
can do. And I think even if I had the magnet, I don't know that I really would have
gone through with it and turned it off because there's always the underlying thing,
that this, maybe, is saving his life. You're just not a hundred per cent sure.
Partners typically comprehend the ICD shock(s) as evidence of the device's reliability and
effectiveness, and as affirming their trust that its protection will facilitate future shared
possibilities.
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6.5.2
Making sense of the ICD
Partners metaphorically accommodated the patient's ICD as a reassuring insurance policy
(Mrs C) and security for the patient, family and self.
Partners (Mr D; Mr G) who
previously rescued the patient from a cardiac arrest, valued how the ICD's protection
eased fears of ever again being responsible for the patient's survival. The ICD's protection
provided the confidence, optimism and authority to get on with life (Mr D) and, as Mrs F
noted, go forward into the life that you have beyond this, with some sort of a positive attitude.
Partners accepted the patient's view that the ICD, like other machines, might develop
mechanical problems and eventually fail. As reflected by Mrs C, rather than worrying
about this risk, the partner remained focused on the ICD's positive benefits:
SR:
(Having already asked the question of Mr C) What about you [Mrs C], what's the
defib meant for you?
Mrs C:
I think relief really. ... It's like an insurance policy, a back-up, if you like. It's there
even when the doctors aren't. ... One day it probably won't work, and that will be
that, but it's there and it's still working so, we're lucky that this technology's there
and it can help.
6.5.3
Making sense of the patient's dislike of the ICD
The patient's desire for the ICD to be ceased threatened the partner's regained sense of
security (Mrs B; Mr G). The partner (Mrs B) who witnessed her husband's receipt of
multiple shocks understood his desire to have the ICD removed. In his view, its continued
presence posed the threat of more shocks, pain, loss of control and impaired quality of life.
She reluctantly accepted his decision:
SR:
If the decision was up to you, would you recommend that [he] have another
defibrillator?
Mrs B:
Mmm. That's a hard one. (Laughs) Maybe, maybe not, ... For me, for wanting
him around longer, yeah, sure. But for his life and his quality of life, I'd probably
say no.
Another partner, Mr G, could not comprehend his wife's dislike of her ICD (described
earlier in Chapter 5.5.2) and decision against a future replacement. In his view, cessation of
the ICD represented withdrawal of life support and an act of euthanasia that should only
be decided by the cardiologist when imminent death made the need for an ICD redundant:
SR:
(To Mr G) If I was to say to you, what has [Mrs G's] defibrillator meant for you, or
what's been the experience for you as a partner of someone who's got a
defibrillator? ...
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Mr G:
Well, it's security, as far as I'm concerned because it will avoid me being put in the
same situation I was the first time. ... I haven't ever thought about it the way [Mrs
G] was talking about, that if you were to die or something else, that it won't let you
die: well, that's ridiculous. The heart is not the only organ that kills you; there are
other things that you die of. ... It will come to a space where the defibrillator is no
longer an aid, and it becomes a hindrance, if your heart plays up all the time, the
defibrillator becomes redundant, because it discharges itself, so I mean, this is a
terrible thing that you have to work out with the cardiologist. ... Because otherwise
we go into the euthanasia path where you, you know, switch off life support.
No partner mentioned preparatory information about a possible discontinuation of the
ICD, either electively or as an end-of-life decision.
These aspects indicate how accommodation of the ICD represents the partner's integration
of its promised security into everyday life. Single ICD shocks renew awareness of the
patient's vulnerability, but also confirms the partner's confidence and trust in the device.
The patient's desire to discontinue the ICD threatens the partner's security, exacerbates
their felt vulnerability and reduces the likelihood of a secure future.
6.6
Summative comments
Partners in this study provided detailed insights into the complexities, responsibilities and
perceived vulnerability of the everyday reality and experiences related to the patient's
need for, receipt of and recovery after the implantation of an ICD. This chapter described
the nature and meaning of Being a Partner. Similar to the preceding description of Being a
Patient, this chapter was structured around the thematic transitions of being disrupted and
distressed, reconstructing life, appreciating and celebrating life and accommodating the
ICD. Although experiencing these complex transitions in ways that differ from the patient,
partners describe how the phenomenon of living with an ICD is encountered by, lived by
and accorded meaning, by all the family.
The following comments reflect on the understanding that emerges in this chapter.
Foremost, the experience of living with an ICD as a partner reflects an embodied
relationship that is grounded in concern, commitment and being available to protect the
patient's well-being. At its most profound, the partner's responsibility takes the form of
rescuing the patient after a cardiac arrest. The personal vulnerability felt at the near loss of
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the patient persists because of the patient's continued risk of arrhythmic events. Typically,
the partner assumes the onerous responsibility of protecting the patient and ensuring their
well-being.
The offer to the patient of an ICD brings some hope, but waiting for its implantation is a
time of uncertainty and, if the patient spends the waiting period at home, being vigilant for
any signs of problems. Adding to the partner's vulnerability is a sense of being illprepared. Typically, there is a felt sense of not knowing enough about arrhythmic events,
managing potential problems, or what to expect in relation to the patient's recovery. Rarely
does the partner have ready access to a health professional knowledgeable enough about
the ICD to discuss day to day issues, or to meet other partners to share experiences and
concerns. Within this context and in contrast to the patient's view, home becomes a place
of insecurity and anxiety. It is where the partner feels the full enormity of being solely
responsible for the patient. For some partners, home also presents inescapable, daily
reminders of the place where the patient suffered an earlier cardiac arrest. Some partners
also have to minimise the impact of the patient's situation on their children.
Typically, the partner hides the toll of personal frustrations, tiredness and felt isolation.
The primary focus becomes the patient's recovery through reassuring and encouraging
various activities and providing the freedom for them to take occasional risks. In addition,
the partner uses various strategies to minimise despondency if the patient experiences
ongoing emotional or physical problems. Time and the patient's recovery increases the
partner's trust in the ICD's protection. As with patients, this trust diminishes anxiety and
uncertainty, helps to restore a sense of normality to everyday life and facilitates future
possibilities. The patient's ICD is thus seen as a protective insurance that eases the
partner's embodied vulnerability and perceived responsibility. This re-established sense of
security is jeopardised if the patient expresses the desire for the cessation of the ICD as an
active therapy.
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CHAPTER SEVEN
THE ICD AS EXPERIENCED: FRIEND OR INTRUDER?
7.1
Introduction
7.1.1
Living with an ICD: The ICD-as-experienced
This chapter extends current perspectives of the nature and meaning of living with an ICD
by presenting an interpretive understanding of the ICD-as-experienced. As discussed in
Chapter Two, there is already an extensive body of information about the ICD, in terms of
device efficacy, reliability and cost-effectiveness. Previous chapters (Chapters 5, 6) offered
specific insights into the patient's and the partner's everyday lived experiences. These
insights complement the current body of knowledge (Chapter 2) about patient outcomes,
complications, coping processes or problems in adapting to the device.
This chapter shifts the focus from the ICD and everyday lived experience towards the ICDas-experienced, that is, interpreting how this implanted technological device is perceived,
integrated, embodied and comprehended. This interest serves three concerns. First, it
addresses the phenomenological concern to study the object-in-experience (Crotty 1996;
Kestenbaum 1982), that is, the ICD (as object) as it is directly experienced by patients.
Second, this focus addresses rarely asked, but relevant questions about living with this
implanted technology. For example, what is the immediate experience of the body-withICD? In what ways does the ICD manifest its bodily presence, power or potential in and
through the body? How is this technological device experienced, integrated and embodied
within the body and self? What is the relationship between human consciousness of the
ICD (i.e., awareness, perception or immediate experience of the device) and the world,
with respect to various activities, interactions and meanings? Third, this chapter attends to
the recognised need (Koch 1995; van Manen 1990) for a deep, hermeneutic dialogue
between various textual sources to offer a better understanding of a given phenomenon.
Interpretation of the ICD-as-experienced involves two related but different paths, each
drawing upon insights offered in the experiential descriptions from the patients
participating study. The first section of this chapter discusses the first path. This path
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explores the various ways in which the ICD (in and through its bodily presence, power
and potential) manifests itself to the patient. This exploration considers the meanings of
these manifestations, and how they influence the integration and embodiment of the
device. Briefly, anticipation of the ICD as a promised security preceded its implantation.
Device implantation contributed to the felt experience of being in awe of the ICD as a
stranger in the body. Two subsequent possibilities of the ICD-as-experienced emerged. The
first, more positive change reflected a situation of progressively accepting, appreciating
and connecting with the ICD, leading to its embodiment as a friend. The more negative
alternative presented itself in the felt sense of being occupied and controlled by the ICD's
presence and power, leading to its existential rejection as an unwanted, inescapable and
alienating intruder that constrained the meaning of everyday existence.
The second path, described in the latter section of this chapter, considers how various
social meanings (ideologies, ideas and related practices) mediate the comprehension and
significance of the ICD-as-experienced. Specific issues reviewed include the relationship
between technology and human existence; the impact of technology on nursing and
patient care; medical discourses about the ICD; and media discourses about biomedical
technology. This review suggests these issues convey meanings about living with
technology and the ambiguity of the ICD-as-experienced.
7.1.2
The hermeneutics of exploring the ICD-as-experienced
Finally in this introduction, it is relevant to explain the hermeneutic, reflective questioning
standpoint adopted in the following interpretive analysis. This standpoint was
theoretically inspired by ideas emanating from several sources of existentialphenomenological philosophy (e.g., Burch 1991; Cooper 1990; Merleau-Ponty 1962; van
Manen 1990, 1994, 1999). This interpretation was inspired by the rich understanding
evident in other hermeneutic phenomenological analyses of illness experiences (e.g.,
Kestenbaum 1982; Madjar & Walton 1999; Toombs 1992; van Manen 1998).
The philosophical texts provided valuable guidance for initially seeing what the
experiential accounts of ICD-as-experienced disclosed about the notions of lived body,
embodied experience, being-in-the-world, perception and comprehension. For example, in
keeping with others scholars (e.g., Cooper 1990; Merleau-Ponty 1962), van Manen (1990;
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1998) points to the centrality of the lived body in understanding embodied experience. The
phenomenological concept of lived body represents the view that being human means
both having a physical body and being a body. The physical body, or body-as-object, refers
to that which experiences sensory awareness and is also the object of medical
examinations, monitoring, measurement and treatment in the context of disease or injury.
In contrast, being a body embraces the physical body in a broader sense of lived body, or
that which defines the self as an embodied human being (Cooper 1990; van Manen 1998).
The lived self is the means of being-in-the-world, the vehicle of "— of intentions,
understanding and perception" (Cooper 1990, p. 81), which "... remembers past hurts, falls
ill, smells, hurts, fails to knit together or resists being propelled into the world" (Walton &
Madjar 1999, p.4). Existentialist thought uses the phrase of being-in-the-world to denote
the lived body's reciprocal engagement in a world that, through its objects, bodies,
interactions and actions, both conveys and is attributed meaning. Hence, as Cooper (1990,
p. 57) reflects, "... human existence is intelligible only in terms of an engagement with [the
world]". Understanding the ICD-as-experienced thus involved uncovering how it
mediated the patient's lived sense of engaging in the world.
Central to existential and phenomenological thought is the concept of perception. As
explained earlier (Chapter 3.3.2.iv), perception is the primary mode of engaging in the
world through the immediate embodied awareness of particular objects, things or bodies.
Perception is always mediated to some extent by meaning, in part reflected in the linguistic
naming of that which is perceived (Cooper 1990). Thus, perception of the ICD (its presence,
structure, functions and purpose) is already mediated and ascribed meaning, in part by its
very name. By virtue of the reason for its implantation, its meaning is also mediated by
fears, uncertainties, hopes and desires for the self. Perception or immediate awareness Is
also perspectival; it discloses particular meanings, possibilities or significances, while
hiding others (Cooper 1990; Merleau-Ponty 1962; van Manen 1990).
As many possible experiential examples as could be found were reviewed for insights into
the meaning of the ICD-as-experienced. Further, this review explored what, if anything,
was disclosed about existential issues, such as death, life, choice and authentic existence.
Reviews of perceptual insights of the ICD-as-experienced (in terms of its presence, power
and potential) included examinations of its temporal, spatial, relational and corporeal
dimensions or possibilities. These philosophical dimensions or possibilities reflect the
fundamental existential structures of the everyday world (Merleau-Ponty 1962; van Manen
1990; 1998).
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The dimension of temporality, in contrast to the objective measured time of a clock, refers
to the subjective sense or experience of time (van Manen 1990). Examples of temporality
include the sense of waiting (in dread, or in anticipation), of time dragging, of time passing
quickly, or as Merleau-Ponty (1962, p. 240), notes, the sense in which a phenomenon "...
brings into existence a past and a future for the present". The concept of spatiality refers to
the lived body's sense of space and place, as distinct from measured distance (van Manen
1990). Consideration of the spatiality of the ICD-as-experienced reflected on the felt
presence of the ICD as an object in the body and its impact on the sense of familiarity, the
body-as-viewed-by self and others, and related social meanings. Based on van Manen's
(1990) explanation of the concept of relationality, this exploration examined meanings
arising from and ascribed to various social interactions and relationships with significant
others, including partners, health professionals and friends. The quest to understand
corporeal (lived body) dimensions thus involved exploring the lived sense of the bodywith-ICD (and its inherent technology), the self-with-implanted technology, and being
viewed by others as a body-with-ICD. Also considered at this level of exploration were the
corporeal ways in which the ICD was perceived and perceptually integrated into the self.
Following Merleau-Ponty (1962, p. 163), these processes cumulatively disclosed how the
body is "caught in" the world, such that worldly things (such as the ICD) become an
extension, "... annex or prolongation of itself ... [and] part of its full definition". Where
relevant, clarification of insights and understandings emerged from a review of the related
experience of other cardiac phenomena, including living with ventricular arrhythmias,
living with a pacemaker and living with a transplanted heart.
The second part of this interpretation involved a dialogical exploration to disclose how
various social ideas and discourses about technology permeated the meaning accorded to
the ICD-as-experienced. Reviews of philosophical critiques of technology, and nursing,
medical and media discourses on medical technology disclosed some of the sources of
ambiguity that frame living with an ICD. As described below, these processes unveiled the
complex and varied ways in which, for patients of this study, the ICD manifested its
presence, affected existence and reciprocally framed the meaning accorded to the ICD-asexperienced.
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7.2
ICD-as-experienced: Changing dimensions, possibilities
Figure 7.1 offers an introductory overview of the changing dimensions of the ICD-asexperienced that emerged over time and with respect to various circumstances
encountered by patients in this study. The following description discusses each dimension
in detail.
Figure 7.1:
Evolution of the relationship between patient and ICD
Anticipating the ICD: Arrhythmic risk
↓
Implantation of ICD: Being in awe of the ICD as a stranger
/
Accepting
↓
Being occupied
↓
Appreciating
↓
Being controlled
↓
Connecting
↓
Rejecting the ICD
↓
Embodiment of ICD:
7.2.1
\
FRIEND
Rejection of ICD:
INTRUDER
Anticipating the ICD: Living on the edge and waiting
The onset of ventricular arrhythmias disrupts the individual's unquestioning trust in the
body and its regular heartbeat. Ventricular arrhythmias expose the fragility of existence
and how it is so easy to die in certain circumstances (Mr F). Hospitalisation, with its cardiac
monitoring, invasive diagnostic procedures and antiarrhythmic drug trials, confirms the
unreliability of the patient's body. The fear of death during electrophysiologic (EPS)
evaluations compounds this vulnerability (Mrs D; Mrs E; Mrs G). Relief at the restoration
of a normal heart rhythm is diminished by the meaning of having failed the EPS. The EPS
provides the cardiologist with diagnostic evidence of the patient's arrhythmic risk. For
patient, however, failing the EPS vividly demonstrates their inability to retain control over
the heart. Losing control over that which is metaphorically the core and soul of being and
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existence keeps the patient's focus on the physical body and thus further disrupts personal
integrity.
The body's vulnerability to unpredictable arrhythmias means existence is suspect,
uncertain and marked by doubts, anxieties, loss of control and impaired concentration (Mr
C; Mrs E; Pycha et al. 1986; Vlay & Fricchione 1985; Veseth-Rogers 1990). The promised
ICD offers hope for a more secure future, but patients first endure a tenuous wait. Waiting
is such a common activity that its complexity, qualities and significance are often
overlooked in everyday life. Yet, as Fujita (1995) points out, the object and the events
surrounding the wait determine whether it is experienced as a time of excitement, hope,
anticipation, patience and trust, or as indifference, impatience, detachment or dread.
Waiting for the ICD, and its anticipated security and respite from arrhythmic vulnerability,
is similarly complex and varied. When the wait is spent in hospital, a week is experienced
as too short a time to adequately learn about the ICD and prepare one's self (Mr A). In
contrast, time drags when the wait exceeds a fortnight. Another patient (Mr F) spent the
first week of his wait in an intensive care unit following diagnostic confirmation of his
need for an ICD. The two week delay until ICD implantation provided time to clarify
initially confusing information, but he also experienced it as a long and emotionally taxing
time that disturbed his sense of reality:
Mr F:
What I found in hospital was that I took on a sort of a 'village' mentality, that was
my world. ... There were one or two members of staff who, because of my grey hair
and my age, treated me as if I had either lost my marbles, or was about to do so.
They kept asking me ... "Which ward are you in? Which bed? How old are you?
When's your birthday?" ... What I found a bit undignified was this assumption
that you now have lost your faculties. ... And we were wondering if we shouldn't
contact the AMA or somebody involved with nurse training, and tell them how this
was very offensive, and can be disturbing.
Waiting at home, in contrast, is a time of being really scared about further arrhythmic events
(Mrs E). The unreliable body is closely monitored for any untoward signs for any
untoward signs by the patient and worried family members. As distraction but also in
anticipation of the forthcoming ICD, steps are taken to improve the body's physical and
emotional well-being.
Waiting for the ICD — as with any illness, injury or treatment to the physical body — is
also a time of many unaddressed concerns. There are unanswered questions about the
device itself:
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Mrs E:
Like with [the implanting cardiologist], when I asked him how long would the
machine last, you could tell that he really didn't have a definite time. ... Like, the
fact of whether you're going to be conscious when your machine works or not. I
don't think they know until the first one happens.
Doubts about being used as a guinea pig in a medical experiment further challenge the
patient's integrity (Mrs E; Mrs G). Concerns about the ICD's impact on the sense of body,
self and life reflect the existential question, "If I am a 'lived' body, do I remain the same
person when my body no longer allows me to live as I once did?" (Cooper 1990, p. 100;
Merleau-Ponty 1962). No patient had access to people who might help to resolve this
existential anxiety. There was no opportunity to meet somebody that had a device in like this
[to] talk to (Mr B) and no access to psychological counselling. Yet, more than a decade
earlier, physicians recognised the need to help alleviate the patient's "... anxiety and fear,
while facilitating acceptance of the surgery and the device" (Pycha et al. 1986, p. 842).
7.2.2
Being in awe of the ICD as stranger
Implantation of an ICD exposes what Merleau-Ponty (1962, pp. 194-195) refers to as the
ambiguity of the body or, as noted in the introduction, the dual quality of being both a
physical or observable body, and a lived body that is intelligible and embodied. The ICD's
presence draws attention to the physical body and thus diminishes the sense of a unified
or embodied self. Initially, awe surrounds this strange object and its physicality or size,
weight and location in the body. This awe is most obvious with the 250 to 290 gram weight
and large dimensions of the abdominal generator (noted earlier in Figure 2.1).
In addition to the pain of abdominal and chest wounds, the awe surrounding the ICD's
strangeness relates to its encroachment of the body's internal space. Its presence is
associated with sensations of localised pressure, backache, abdominal pain or discomfort,
each made worse by bending, sitting or lying down. The patient soon learns to avoid
movements that compress the hard generator against adjacent fleshy organs. Patients are,
however, ill-prepared for the intensity of these discomforts:
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Mr B:
No guides, no anything. All I got told was some people feel it a little bit, some don't
... and I assume that's the zapping part. ... I can feel the device actually sitting
there ... [and it] sometimes that hurts a lot ... if I bend over the wrong way, or just
lie there with an empty stomach. ... You can feel the device sitting there, and um..
sort of applying pressure and that. And then ... you've got the wires that run over
the rib cage there, and you can always feel that. I'm always saying what happens if
I move too much, will the wire break and all that? And if it breaks, what's going to
happen? ... [It] hurts when they ... put it in. Oh, you can feel it, like the fibres,
feels like it's rough, like sandpaper inside you until it all settles down. ... They cut
a little pocket and slide it in there, and you can feel that for many, many months.
Mrs E:
You can't actually see it, but you can actually feel it, because it hits the ribs. ... But
I got really angry when it started in the beginning, because I thought, "God, I've
gone through all of this and I'm ending up with a back-ache that won't go away".
In contrast, implantation of a smaller generator (less than 100 grams) into a pectoral
muscle pocket accompanied by transvenous electrode insertion incurs little post-operative
discomfort. The patient is usually discharged home after two to three days (Fitzpatrick et
al. 1994; Trappe 1996):
Mr A:
Didn't hurt. There was no ache, no pain, no nothing. You were just aware of the
thing, simply because they came and had a look at it every couple of days.
Mr F:
Much to my relief, I woke up [after the operation] and there was a slight discomfort
... along the top rib, the pouch, where the stitching had gone. ... The next morning I
felt better. ... I still can't work out how you can open up somebody's chest, make a
pouch, ram one of those things in, ... put those wires down into your heart. ... This
is too good to be true.
The ICD's presence may also distort the external body. For some patients, its palpable and
visible extruding bulge changed and distorted the body's external appearance and image
(Mrs G). Belts or clothing straps over the bulge also resulted in an irritating skin friction
(Mrs G).
Being in awe of the ICD also reflects the patient's concerns about its functionality, that is,
its ability to accurately monitor the heart and effectively detect and treat dangerous
arrhythmias. Realising their existence depends on the reliability of these functions, patients
protect the ICD by avoiding movements, activities or situations that might impede its
functions. Nevertheless, doubts arise about its susceptibility to metal fatigue and lead
breakage, problems known to affect the functions of other machines. Media reports about
defective biomedical devices compounded these concerns for patients (Mr A; Mr B).
Most patients experience some sense of apprehension and even fear in the early weeks
after the ICD was implanted. Having such a device in the body is not normal (Mrs E; Burke
1996). It takes time to understand both the body's reactions to the ICD's presence and the
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ICD's response to the body's activities. Some patients are frightened: "At first I had a fear of
having a foreign object in my side, a tremendous fear of that and I had a lot of problems
getting over it" (patient, in Sneed & Finch 1992, p. 92). Others are in awe of the device:
Mrs E:
Well I've got a big machine and that's sort of pretty mind-blowing. I mean that
whole thing was. To think that you've got this big thing in your body that's got
leads and stuff. And that sort of blows you away when you really think about it.
Apprehension and uncertainty surround the ICD's potential to deliver a shock. Patients
realise the ICD's life-saving value lies in its ability to correct a life-threatening arrhythmia
through an internal shock. Nevertheless, trepidation frames the prospect of being shocked:
Mrs G:
And also you sit like a cat on a hot tin roof for the first year, expecting the thing to
go off. And, you know, are you able to go here, or will you go there? ... I thought
well, once it's gone off, I'll be right, I'll know what it feels like. So I was really
quite pleased when it did, because it was not nearly as bad as what I thought it
might be.
Concerns and uncertainty about the experience of being shocked are further reasons for
closely monitoring the body, despite being unsure about the significance of particular
symptoms or signs:
Mr F:
But for the first few weeks, I did listen to my heart, to see if it was changing beat, or
to see if anything was happening, and nothing was happening.
SR:
You were just very conscious of your heart, or you actually took your pulse?
Mr F:
Well, you know, I was always conscious of jerks and bumps, and this was the sort of
thing that I was looking for, that you imagine a shock to the heart would result in.
Symptoms such as chest discomfort, faintness, fatigue, breathlessness or ectopic or
irregular heartbeats are interpreted initially as possibly signifying an impending
arrhythmia. Patients learn that the symptoms usually abate if they rest for a few minutes.
To their surprise, however, patients realise there is no symptom or sign that specifically
warns of an impending shock.
Living with an ICD means being different (Mr C; Mrs D; Mrs E). Lack of public awareness
about the device means that other family members, friends and colleagues have difficulty
understanding its functions and may even be completely schmalzed by the whole thing (Mrs
D):
Mrs E:
Because I was the [number patient] in Victoria, not a lot of people knew about them
and I found that really hard. My local GP didn't have a clue. ... And anybody
different you talk to, and they'd say "Oh yes, a pacemaker", and you'd give up. ...
"Well, if they want to think of it as a pacemaker. You'd say "It gives me a zap" ...
but they didn't really understand. You find that a bit hard in the beginning.
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Being the object of the other people's anxiety and concerns and being female emphasise the
sense of being different. Two female patients (Mrs E; Mrs G) experienced this difference in
the responses or attitudes of male cardiologists and the curiosity of male friends.
Patients in this study revealed two directions in their perception and comprehension of the
ICD. The first more positive direction, reviews transitions in how the patient accepts,
appreciates, integrates and embodies the ICD as a trusted and valued friend. The second
part of the following discussion reviews the alternative, more negative perception of the
ICD as a foreign object that occupies and controls the body, such that it becomes an
alienating intruder in the body and in everyday life.
7.2.3
Accepting, appreciating, connecting: The ICD as friend
7.2.3.1 Accepting: The ICD as an instrumental body extension
For most patients, the initial awe of the ICD diminishes with time and with an emerging
understanding and acceptance of its practical value for the body. Patients acknowledge
how the ICD eases the vulnerability, anxiety and fear of living with an arrhythmic
susceptibility and enables the resumption of everyday activities.
Acceptance of the ICD might be interpreted as an embodied integration of it as an
instrumental body extension. Existentialist literature notes how technology, in the form of
specific instruments or tools, evolved historically from the human need to overcome
fundamental bodily deficiencies (Cooper 1990; Heidegger 1962, 1977; Idhe 1990, 1996;
Merleau-Ponty 1962). Indeed, Cooper (1990, p. 63) suggests the definition of an instrument
is of an object that "... can be used to make good a lack, [such] as when the inkwell is used
to cure my pen's lack of ink". Merleau-Ponty (1962) goes further by suggesting instruments
meaningfully extend the individual's possibilities for engaging in their world. He
illustrates by noting how the instruments of an organ, typewriter, white cane, or car allow
their respective users to create music, communicate, see, or travel (Merleau-Ponty 1962).
Biomedical instruments, such as artificial limbs, spectacles, dentures and ICDs, similarly
overcome specific bodily deficiencies. By assisting a faulty body part these instruments
facilitate the individual's re-engagement with their world. Use over time increases the
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body's familiarity, knowledge and ability to use and accept such instruments. Likewise,
diminishing awareness of the ICD as a foreign object creates the possibility for it to be
accepted and appreciated as that which allows patients to interact meaningfully with their
world. Patients in the present study did not, however, describe the same deliberate efforts
as those in Burke's study (1996, p. 358) who adjusted their "... thoughts, beliefs and actions
... to 'make room' for the ICD".
Accepting the ICD also means accepting the risk that, like other machines, it might develop
a fault and fail (Mr A; Mr B; Mrs E; Mr F; Burke 1996). Reductions in the patient's
symptoms, together with the realisation that you have to trust that the machine is going to
work because you can't live in an anxiety state (Mrs E) direct the patient's attention toward the
ICD's promised security. Patients try to ignore their concerns about the ICD's reliability, or
its negative aspects and discomforts. This is not dissimilar to the process of "reconciliation"
with the ICD's negative effects described by Burke (1996, p. 362). Increased activities,
without adverse events, enhances the patient’s trust in the ICD and sense of control. This
takes time. One patient reported to Sneed and Finch (1992, p. 24) that "[t]he machine runs
you for 2 to 3 months, then you run the machine".
The receipt of a single ICD shock manifests the ambiguity of the ICD. As noted later, it also
contrasts with the meaning for the conscious patient who receives multiple shocks. A
single shock usually occurs without warning and presents as a split second painless jolt or
bang. Although providing the patient with a vivid and immediate reminder of their
arrhythmic susceptibility, reassurance comes from soon feeling well enough to resume
gentle activities after a brief rest. The lack of any pre-warning at all (Mr C) brings concern
about the possible consequences of an arrhythmia occurring while the patient is driving
(Mr C; Mrs E). Regardless of this concern, a single shock reassures the patient that the ICD
works as intended and its shock is not as bad as anticipated (Mr C; Mrs D; Mrs E; Mrs G).
This reassurance also nurtures a growing trust in the ICD.
The ICD's demonstrated ability to protect the patient from the likelihood of an arrhythmic
death also brings into question its potential to artificially keep them alive when it is their
time to die (Mrs E; Mrs G). Resolution of this anxiety involves the patient's
reconceptualisation of death either as that which is premature or, alternatively, as that
which is destined or ultimate. Premature death from cardiac arrhythmias is understood as
that which is untimely, not-yet-meant-to be and prevented by the ICD. The ICD's
protective presence thus eases the tension of an otherwise uncertain and indeterminate
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existence. It makes an active and fruitful future possible: You've got plenty to do and plenty of
things to think about when you're living rather than worrying about dying (Mr A).
Ultimate death, in contrast, is understood as the patient's destined, natural and inevitable
demise. In existentialist thought, human existence is temporally bounded or framed by this
inevitable demise (Cooper 1990). In the existentialist view, life is constituted by "beingtoward-death", that is, the individual's beliefs, activities and future plans involve an
inherent "anticipatory resoluteness" about the inevitability of death (Cooper 1990, p. 35).
Patients with an ICD reveal a similar anticipatory resoluteness. They do not expect to make
old bones (Mrs E). They realise that their coronary artery disease (Mr A; Mr C; Mr F),
structural cardiac abnormalities (Mr B) or lung dysfunction (Mrs G) may shorten their
lives. Acceptance of this possibility means organising their affairs (Mr F) and determining
to do the best you can before you go (Mr A). While accepting the ICD might prevent
premature death, patients imply this device has no conceivable role in their destined
death: If your number's up, your number's up (Mr A); I had no say in coming in and I have no
say about going out (Mr A); Que sera sera, what will be will be (Mrs E). Reflecting the universal
desire for a peaceful death, there is an implied belief from most patients that the ICD will
not interfere in their destined death. As discussed later, the one patient (Mrs G) not sharing
this belief reveals considerable anticipatory fear about dying and death.
Accepting the ICD as an instrumental body extension transforms and extends the various
envisaged possibilities of everyday existence. Notably, it leads to a reconsideration of the
ICD within the context of reconceptualising death as either premature or destined and
ultimate. Such considerations have not previously been disclosed or discussed in the
related literature.
7.2.3.2 Appreciating the ICD as facilitator of possibilities
Most patients come to value and appreciate the ICD as a necessary modification guarding
their faulty body (Mr F). With time too precious to waste on trivial issues (Mr A; Mrs E),
they set meaningful goals. Initial small goals include the ability to again take long walks,
drive the car, farm their land and enjoy the company of family members. Having achieved
these goals, most patients set themselves greater challenges, such as more arduous
physical activities, the occasional risk, new jobs and interstate or overseas holidays.
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Appreciation of the ICD is revealed through descriptions of it as an amazing piece of
engineering (Mr A), an inbuilt ambulance that will zap itself (Mr A), an insurance policy (Mr
C) and a bodyguard (Mrs D).
The satisfaction and pride of these achievements restores the patient's sense of integrity
and replenishes their inner strength (Mrs E; Mrs F). This almost indefinable spiritual aspect
of existence (Hawthorne, D.L., & Yurkovich 1995) is more than emotional or physical
strength. Rather, it is a quality of being that nurtures hope, confidence and endurance
during a crisis (Mr C; Mrs E; Mrs F). By facilitating the achievement of various goals, the
ICD enhances those qualities that help to sustain the patient in difficult times.
7.2.3.3 Embodiment of the ICD: Being at-home with a friend
The routine of again leading a busy life facilitates the patient's ability to feel more
comfortable with the body and less aware if the ICD. Everyday distractions, together with
diminishing symptoms, increases the sense in which the body again becomes ordinary and
no longer closely monitored. There is a growing sense of being 'at home', which in turn
makes it possible to understand the ICD as your friend (Mrs D). As with other friends, it
unobtrusively stays in the background, but reassuringly ready to provide prompt and
reliable assistance in a time of need:
Mr C:
It's done its job each time it's had to, and you know, I'm quite comfortable that if I
collapsed now it would bring me to, bring me around, you know, and I think the
whole town is more confident about that too.
Mr F:
Well, I think it's just reassuring, and it's giving me confidence, really. I feel
reassured that I've got a friend there, you know.
Mrs E:
It's probably a friend. It's part of being a friend I think, now ... because it's there.
And it's my friend because it keeps me alive, and without it, in that time that I had
the big zap, I might not be here. ... It's just kept me going. So it has to be a friend,
doesn't it? I've never really thought about that one. ... In the beginning I probably
resented it. You know, it was there, and I could feel it. Now, I don't feel it, and I
just think it keeps me alive and it's wonderful. ... It's a part [of my body] and a
friend. It's not a separate thing, no. I hadn't actually thought about it really, but it
is a part of me now. ... Yes, and I wouldn't want to be without it, so it's like a
friend.
SR:
Whereas there was a period there where you were resentful of it?
Mrs E:
Yes, you sort of resent it, yes, because you can't lie on your stomach. You can feel
it. It gives you backache, all those little things. So you resent it for quite a while,
and then you just gradually suddenly accept it all. I mean, it's the first time I've
really given it a thought, but it's a friend, it really is.
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Integrating the ICD as a friend involves an apparent contradiction of just gradually suddenly
(Mrs E) becoming complacent about its presence. Patients express surprise that they could
temporarily forget something as significant as the ICD (Mr D; Mrs E; Mr F): You sort of
suddenly think, "Oh, I'm not noticing it anymore" (Mrs E). This integration and sense of
connection underpins the ICD's perceived embodiment as part of the self:
Mr F:
I know it's a bit unusual to have that there, but I do consider it just more or less
part of my anatomical system. ... I just think that I've joined that club where I've
got a device that is not my body, but is doing a better job than my body did. ... I just
feel that it's quite natural, it's doing a good job, and it just doesn't worry me at all
now.
This embodied connection reflects Merleau-Ponty's (1962, p. 163) view that embodied
things become an "... annex or prolongation of [the body] ... incrusted into its flesh [and]
part of its full definition ...".
Embodiment and accommodation of the ICD is further reflected in how the body develops
the intelligence to automatically move in ways that minimise any discomfort associated
with the generator. Being able to forget the ICD also represents the phenomenological
notion of the "body-passed-over-in-silence" (van Manen 1998). The distractions of
everyday life prevent the well person from being constantly aware of their body. Its
movements, functions or actions are ignored, silently passed over and absent in day to day
perceptual awareness (Turner 1992; van Manen 1998). Turner (1992, p. 40) suggests that, in
effect, "our relationship to our own bodies is, so to speak, so comfortable that we are not
struck by its perceptual absence". Similarly, unless distracted by a shock or adverse events,
the comfort of embodying the ICD as a friend and part of the self sees it also passed-overin-silence, into the background of perceptual awareness. This transformation also reflects
Heidegger's (1977) reference to the ready-to-hand quality of technology such that, as long
as a given technology performs as expected, its presence and use become mundane,
unquestioned and otherwise ignored.
Embodiment also has a temporal quality. Embodiment of the ICD contributes to the
patient's restored sense of identity, unifying past and present with future possibilities. In
terms of linear time, in the absence of adverse events, this embodiment takes at least 12 to
18 months with an abdominal device (Mrs D; Mrs E) and approximately three to four
months with a transvenous pectoral ICD (Mr A; Mr F). Approximately 75% of patients
whose ICD implantation involve a transvenous electrode insertion report a regained sense
of normality within six months (Burke 1996). Acceptance and embodiment of the ICD also
171
means that less significance is placed on the results of routine checks of the ICD during
clinic appointments (Mrs E). In the early weeks after device implantation these checks
provide much needed reassurance of the ICD's reliability. Embodiment of the ICD sees
these visits viewed as something very, very ordinary and no longer the object of patient or
family concern (Mrs E).
In summary, this section suggests that embodiment of the ICD as a friend comprises
various transitions in perception, experience and comprehension of the device. The ICD's
physicality and functionality as a foreign object in the body initially dominates awareness.
Gradual acceptance of its instrumental presence, protection and potential engender a
growing trust in the ICD as a useful bodily extension. Its facilitation of day to day
possibilities and the future underpin its embodiment as a friend, as well as a restored sense
of lived self.
7.2.4
Being occupied and controlled: The ICD as intruder
The following section describes the contrasting perception of the ICD as occupying and
controlling the body. Eventually, the ICD is existentially rejected as an unwelcome
intruder. Despite extending life, it limits the possibility of a meaningful authentic existence
(Mr B; Mrs G).
7.2.4.1
Being occupied by the ICD
For some patients, the awe of the ICD as a stranger in the body does not recede. Despite
being able to resume their everyday activities, these patients are constantly reminded of
the ICD's presence. The abdominal generator, in particular, is perceived as a foreign object
that spatially encroaches on and occupies the body. Internally, pressure on adjacent organs
produces persistent discomfort and intermittent backache. Externally, the generator's
conspicuous bulge distorts the familiarity of the body. This transforms the body as seen by
self and others into something one patient described as ugly and unromantic (Mrs G). This
existential encroachment also reinforces the perception of the ICD as an object other-than
the self, and one that disrupts the immediate reality of the lived body.
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7.2.4.2 Being controlled by the ICD: Thwarted existential options
In addition to occupying the body, some patients perceive the ICD as an artificial
mechanical object with the technical ability to program and control the body (Mr B; Mrs
G). Unlike other biomedical bodily extensions — such as spectacles, dentures, artificial
limbs, intravenous infusions or dialysis needles and tubing — the ICD is non-detachable.
The inescapable presence of its physicality, artificiality and potential magnifies the
patient's vulnerability and estrangement. Further resentment arises if the patient was been
poorly informed about the ICD or felt pressured into accepting its implantation:
Mrs G:
Yes, I've hated it, yes. I think I've reacted like that too, haven't I? It's turned me
off me very much ... as somebody romantic or sensuous. Yes, I just feel
programmed. Logic doesn't come into it! — Before it went in ... I was really angry
because the whole thing doesn't sit comfortably with me. ... But I also got angry
about the lack of information, and ... signing an informed consent. I said to the
cardiologist, "How on earth could you say I'm informed!" ... He said ... "Don't you
want to sign it?", and I said "Well, I have to sign it, because everybody wants me
to have it". ... I felt pressured into it. I knew I had been a nuisance ... for all those
weeks [in ICU], so the least you can do is to comply with what appears to be a way
to prevent it happening again, doesn't it? ... Yes, I felt very uncomfortable about it.
Mr B:
Well, [doctors could have] told us more of what the thing's actually capable of ... So
it sort of gave you a bit of an option [to say] "no I don't want this thing", or "yeah,
go for it". ... And talk to us as people, and not as, you know, behind our backs to
the other doctors, and leave us like mushrooms — kept in the dark and fed bullshit!
A source of further anger for such patients is the experience of the ICD as that which
controls their life. Examples included receiving multiple shocks while conscious, and the
envisaged intervention of the ICD when it is the right time to die. As discussed below,
each situation limits the quality of the patient's existence.
7.2.4.3 The ICD's distressing shocks
For the conscious patient, the distress and pain of successive shocks is exacerbated by the
helpless realisation that each shock signifies a persistent arrhythmia, depletion of the ICD's
limited energy reserves and the possibility of dying (Mr B; Hunt 1999). Further distress
occurs when the emergency department staff lack sufficient knowledge to manage the
situation (Mr B):
Mr B:
Well the hospital [staff] here didn't really know anything about the device. ... See,
they didn't know if it was malfunctioning or what to do, and all that. ... Oh there
were a lot of words exchanged, a lot of swear words on my part; why they were just
standing around. ... [You know when] the next shock's going to come, because you
173
can feel your pulse rate build up, build up, and whack!! ... It would have been nicer
going in your sleep, than getting belted like that.
Multiple shocks demonstrate the ICD's power to save the patient's life. The conscious
patient, however, feels little reassurance in what is described as a scary experience (Sneed
& Finch 1992) that destroy confidence in the ICD (Mr B). Vivid memories, anxiety about
recurrences and panic attacks diminish the quality of the patient's life (Mr B):
Mr B:
[Panic attacks] just appear out of nowhere, sudden light headedness, and of course
you go into instant, faster heart beat, start sweating, you're all shaky, and you
think, this thing's going to bite me again. ... It just happens, and then it goes, and
you wonder when the next one is coming. ... I haven't had a big panic attack for a
while, [but] when I first came home after it bit me that many times I used to jump
up in the air in instant panic and sweat, and start shaking, and all that.
Not surprisingly, the patient may want to discontinue the ICD therapy rather than risk a
recurrence of multiple shocks (Mr B; Cucci in Benner & Wrubel 1989). Patients elsewhere
in this situation receive intensive psychological counselling (Cucci in Benner & Wrubel
1989; Dougherty 1994, 1995; Dunbar, Warner & Purcell 1993; Pycha et al. 1986), but in the
Victorian context, there's no such thing as support for this, 'cos not many people know about the
ICD (Mr B).
7.2.4.4 The ICD's potential interference in dying
The second way in which the ICD is perceived as controlling existence arises from the
belief that it has the potential to thwart death and interfere with dying. One patient (Mrs
G) with severe respiratory disease, saw the ICD as prolonging her life and its distressing
episodes of coughing and choking:
Mrs G:
Just after this last [admission to ICU], I just said to [Mr G] ... "How many times
do I have to go through this?" It's so undignified; it's so violent. ... I suppose I've
still got an abhorrence of a violent death, and if that's how I'm going to die choking - it's very violent, it's horrible.
The envisaged intervention of numerous hideous shocks frustrates the patient's hope for a
peaceful death and gives rise to anger and plenty of fear about the experience of dying:
Mrs G:
One of my big worries is how will I die? And how can I die? And when I raised
this with the cardiologist, he laughed ... "Oh, you'll find a way!". But it worries
me. I don't want to get shocked! and shocked! and shocked! and shocked! while I'm
trying to die, until it runs out of shocks and then I'm allowed to die. ... What a
hideous way to die.
SR:
My understanding is they have the ability to switch the device off.
Mrs G:
Yes, but what if you're home? What if you aren't there, where they can switch if
off? I mean, of course, you're more likely to be home, unless you're sick and in
hospital.
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The patient who has a strong religious faith may anticipate death as a release from
suffering and a spiritual transition: I'd like to be dead, if you like, because my vision of the other
side ... is so positive (Mrs G). In this context it is conceivable that the ICD's technological
defiance of death and metaphorical obstruction of God's will is likely to bring more
anguish.
7.2.4.5 Being alienated: The ICD as a threat
Apprehension, distrust and resentment of the ICD stem from its spatial occupation of the
body, its power to deliver distressing multiple shocks and its perceived potential to
prevent the chance of a peaceful death. In this context the ICD acquires the meaning of
being an inescapable device that technologically controls the body, diminishes personal
integrity, thwarts personal choice and limits present and future autonomy. There is a sense
of estrangement and even alienation, which Cooper (1990, p. 35) describes as the sense of
being existentially lost, no longer comfortable with the self or the world, and "... in search
of a true dwelling ". The passage of time and the patient's resumption of various activities
fail to ease the sense of estrangement and alienation associated with the ICD's presence.
This manifests in the metaphorical objectification of the device. For example, one patient
(Mr B) described his ICD as a thing:
Mr B:
All of a sudden this thing started kicking me... [and] whacking me. ... You think,
this thing's going to bite me again. ... [It is] a prick of a thing!! You see this thing
here (pointing to device), there's only one way I know of turning it off, and that's to
put a stick of magnet on it.
Another patient (Mrs G), who was very uncomfortable about ... having something artificial
inside her body, referred to her ICD as the box, and to her electrophysiologist as being the
box doctor.
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7.2.4.6 Desiring the ICD's removal
Antipathy toward the ICD's presence, power and potential underpins the patient's desire
to discontinue it, either by having it removed from their body (Mr B), or by refusing the
replacement of a depleted generator battery (Mrs G). The hope is that removal of the ICD's
active presence will restore a sense of comfort, autonomy and offer more positive future
possibilities:
Mr B:
Yep! Take it out! I don't like it. I don't like something I've got no control over. ...
The device is always sitting in your head, and you are always worrying. [Is} it ...
going to malfunction, or ... zap you, or whatever? — So I've got no confidence in it
at all. I just hate the thing. ... There are good days, but the thoughts are still in the
back of your head. It's something you can't get rid of ... You know what it's
capable of. ... I myself would prefer it out, and put up with the consequences, than
have this thing go off all of a sudden, and who knows where'd you be. ... For me, I
hate the thing, I really do, I hate it. Better out than in, I reckon.
For one patient (Mrs G), the expressed desire to not continue with the ICD evolved after
she had lived with an ICD for a number of years. Although not specifically mentioned, one
possible reason for delaying a request for cessation until requiring a generator replacement
might reflect its high cost to the health care system. Such costs include approximately
$30,000 at the time of implantation and again with generator replacement. Regardless, the
cessation of ICD therapy was seen as a faint hope, with strong resistance expected from
medical staff who had invested considerable time and effort in its implantation:
SR:
Have you discussed how you feel with the doctors?
Mr B:
Oh, they know. ... Oh, they sort of laugh it off, I think. ... They probably think I'm
joking. ... I would like it out. But they're not going to do that now — they've spent
too much money putting it in.
An additional sense of powerlessness arose if further resistance came from family
members emotionally dependent on the ICD's protective presence:
Mrs G:
I had made up my own mind that I wouldn't have it replaced, but my daughter has
reacted very upsettedly to that. ... I would never have it for myself, to this day,
definitely, wouldn't have had it [but] the family ... were all dependent on it getting
in. ...
SR:
Do you feel that was the right thing at that time, now looking back? ... Do you
think you'll go ahead and have another one put in, when the time comes?
Mrs G:
Oh, I haven't discussed that yet. In my own mind I honestly don't want it.
SR:
And this is something that will depend on what your family want?
Mrs G:
Yes, and I don't know if I can persuade them of that.
A sense of being trapped arises particularly if the partner views the ICD as life support.
One partner (Mr G) equated elective cessation of the ICD to an act of euthanasia:
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Mr G:
Well, it's security, as far as I'm concerned because it will avoid me being put in the
same situation I was the first time. ... I don't want to experience that again. ... I
haven't ever thought about it the way [Mrs G] was talking about it ... that it won't
let you die: well, that's ridiculous. The heart is not the only organ that kills you;
there are other things that you die of. The heart doesn't have to stop for you to be
dead. ... It will come to a space where the defibrillator is no longer an aid, and it
becomes a hindrance. If your heart plays up all the time, the defibrillator becomes
redundant, because it discharges itself. ... Otherwise we go into the euthanasia
path where you, you know, switch off life support.
7.2.4.7 Rejecting internal cardiac technology
The only literature reference to the notion of rejection in living with an ICD comes from
Burke's (1996) grounded theory study of the patient's acceptance of the ICD. Burke applied
the term 'rejection' to the situation in which the patient remains preoccupied by the ICD's
negative or intrusive aspects. The patient in this situation has not yet "... reshaped their
attitudes and behaviours toward their sense of self, their way of life, and the technology ..."
(Burke 1996, p. 358). Rejection of the ICD is thus explained as the patient's failure to adjust
to the ICD. However, such a view assumes the ICD is a neutral technology, that is, devoid
of a particular significance or role in the patient's rejection.
In contrast, the understanding acquired in the present study suggests that an existential
rejection of the ICD — the lived body's intolerance of the ICD — underpins an expressed
desire for either the removal or discontinuation of this device. This chapter disclosed
various ways in which the patient's perceived possibilities and comprehension of the ICD
reflects its embodied significance.
The preceding discussion suggested that an existential rejection of the ICD arises when the
device is perceived as an inescapable, artificial technology that controls existence and
thwarts possibilities of being and existing. It is suggested that an existential rejection of the
ICD is associated with the receipt of distressing multiple shocks (Mr B; Cucci in Benner &
Wrubel 1989) or experiencing the device as that which controls life, dying and death (Mrs
G). Another possible influence arises from the patient's experience of ICDs that develop
mechanical problems. For example, Fabiszewski and Volosin (1992) present a case study
where the patient refused a replacement ICD. This patient had already endured several
ICD replacements required because successive devices developed mechanical faults. As
Burke (1996) suggests, further research will provide a better understanding of the
processes of ICD acceptance. Such research may also offer further insights into the yet
177
tentative notion of an existential rejection of the ICD, identify its contributing factors and
offer specific recommendations on interventions to minimise its risk and facilitate ICD
acceptance and integration.
Mention of the concept of rejection in other cardiac texts uniformly refers to immunophysiological rejection of a donated organ in a heart transplantation (e.g., Christopherson
1986; Lough et al. 1987; Murdock et al. 1987). As evident in this literature, cardiac
transplantation is similar to ICD implantation in that it is an internal technology used to
treat a life-threatening cardiac problem. Heart transplantation similarly engages the
patient in an anxious and variable wait and an uncertain, ambiguous existence. In
recognition of the severe emotional and physical stress associated with transplantation,
clinicians provide the patient with intensive physical, social and psychological pre- and
post-operative support (Christopherson 1986; Lough et al. 1987). In contrast to the ICD's
artificiality, the transplanted heart conveys an image of being a warm, living, fleshy gift to
a threatened body. For most patients, concerns about receiving and living with another
person's heart usually subside over time and are replaced with expressions of gratitude for
the received gift. Most patients also note the value of the transplanted heart for reducing
their sickness-related disabilities and for facilitating an enjoyable and personally satisfying
life (Lough et al. 1987).
Living with a transplanted heart means living with the risk of an immuno-physiological
rejection of the donated organ. It is thus not surprising that organ rejection dominates the
medical literature on this topic. Rejection in this instance refers to the body's recognition of
the donor heart as a foreign tissue and the immune system's response of trying to destroy
and eradicate it. Powerful immunosuppressive medications reduce the risk of
immunological rejection, but also predispose the patient to potentially fatal infections
(Lough et al. 1987; Murdock et al. 1987). Discussion of organ rejection within the
professional literature tends to objectify the body while offering few insights into the
patient's embodied experience (Christopherson 1986). In addition, with the intent of
improving organ donation rates, media publicity about cardiac transplantation highlight
individual survival stories, with little reference to organ rejection.
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7.2.4.8 Elective cessation of the ICD
The elective cessation of the ICD involves several complex ethical issues minimally
addressed in the professional literature. For example, this literature offers little advice on
whether the ICD can be defined as a life support and whether its elective cessation at the
request of the patient constitutes an act of euthanasia. Cessation of the ICD for the
terminally ill patient also involves possibly conflicting ethical principles. On one hand,
respect for patient autonomy gives the patient the "... right to request, refuse or negotiate to
modify treatment" (Greenaway et al. 1992, p. 275). Nonetheless, "... no treatment aimed
purely at shortening life can be condoned, irrespective of the patient's wishes or of the
quality of life which has resulted from the disease process and/or its treatment"
(Greenaway et al. 1992, p. 275).
There is evidence that, contrary to one partner's (Mr G) concern, elective cessation of the
ICD does not necessarily hasten the patient's death (Cucci, in Benner & Wrubel 1989;
Fabiszewski & Volosin 1992; Kawanishi, Song & Furman 1993). Mortality rates among
relatively well patients who have had their ICD discontinued are no higher than among
similar patients with a fully functioning device (Kawanishi, Song & Furman 1993).
Patients (Mr B; Mrs G) in the current study expressed or implied the hope that elective
cessation of the ICD would immediately abolish their device-related anxieties and fears.
No discussion of the likelihood of such a reality being realised was found in the literature.
A recent clinical practice situation encountered in the researcher's work as a cardiac care
nurse suggests that the hoped for relief might not occur for several months after ICD
cessation. An older male patient with severe heart failure was admitted to the cardiac unit
after suffering frequent ICD shocks. He had received his ICD 12 months earlier after
experiencing life-threatening arrhythmias. He noted how he had since received frequent
and sometimes multiple shocks and was often conscious at the time. His acute awareness
of his body and any irregularity of his heartbeat or felt ectopic beats was immediately
observable. His demeanour quickly changed to one of alarm, with a protective bracing of
his body with his arms, as if anticipating more shocks. Such instances recurred several
times during the next three weeks although he was not shocked in this time. He was
subsequently
transferred
to
another
hospital
where
he
underwent
a
cardiac
transplantation and removal of the ICD. After an uncomplicated recovery he returned
home. A chance meeting several months later included his discussion of his varied
179
experiences. He described how he knew he could no longer be shocked, but still
involuntarily braced his body each time there was felt change in his heartbeat. Following
Merleau-Ponty (1962, p. 185), this patient's situation might be interpreted as an example of
the body's knowing gestural response (anticipatory bracing) to a potentially threatening
situation (ectopic beats). For this patient, removal of the ICD did little to abolish the
anticipatory gestural response to his embodied fear and anxiety. If correct, this
interpretation suggests an embodied and ontological significance of the ICD beyond the
previously reported physiological and psychological sequelae. More needs to be learned
about the patient's desire for, and lived experience associated with the elective cessation of
the ICD.
7.2.4.9 The ICD as intruder
In summary, this section described negative aspects of the ICD-as-experienced. It
suggested the ICD may be experienced as an unwelcome intruder that controls the body
and thwarts present and future possibilities of existence. The embodiment of this
experience was understood as contributing to an existential rejection of the ICD and the
patient's desire for its removal or cessation. More understanding of the negative
dimensions of the ICD-as-experienced is needed, both to examine the notion of its
existential rejection of the ICD and develop intervention strategies that promote the ICD's
integration and embodiment.
7.3
Comprehending the ICD: Worldly horizons of meaning
7.3.1
Introduction
Phenomenology accepts that perception of particular objects, things or phenomena is in
part already mediated by meanings derived in and through the individual's engagement in
a social world (Merleau-Ponty 1962; van Manen 1990). As Merleau-Ponty (1962, p. 5)
explains, perception always reflects the individual's engagement or being-in-the-world:
"we are caught up in the world and we do not succeed in extricating ourselves from it in
order to achieve consciousness of the world".
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Previous sections reviewed how the patient perceives the ICD in and through the
experience of the body. The following section considers how the patient's engagement or
being-in-the-world involves contact with various ideas that shape their comprehension of
living with an ICD. The purpose is to illuminate the reciprocal way in which perception is
both embodied, and also informed by the world. Merleau-Ponty (1962, p. 42) explains that
"... to perceive is to render oneself present to something through the body. All the while
the thing keeps its place within the horizon of the world". In ordinary experience, the
meanings of this world often remain latent, tacit or taken-for-granted:
The ever latent meaning of the world, the tacit intelligibility that is the truth of
lived experience, is existentially/ontologically prior to whatever meanings a self
can or does realize in realizing itself and is the basis of all intersubjective relations
(Burch 1991, p. 46).
The particular horizon of the world of the patient who needs and receives an ICD is
broadly framed by ideas about technology, and more specifically by interactions with
health professionals and various medical and media discourses about medical technology.
This section considers how these social aspects mediate comprehension of the ICD-asexperienced.
7.3.2
Technology and human existence
The patient's being-in-the-world conveys various meanings about technology and its place
in everyday existence. Technology, in the form of various machines, tools or life-saving
devices, is so widespread and pervasive that its use, significance and meaning for human
existence is ordinarily seldom explored or questioned. Various scholars in the history and
philosophy of technology have, however, contributed valuable insights into the ways in
which technology pervasively shapes human values, habits, needs, decisions, actions and
practices (e.g., Bausinger 1990; Cooper 1990; Heidegger 1962, 1977; Idhe 1984, 1990, 1996;
Kroker 1984; Merleau-Ponty 1962). Despite differing theoretical perspectives, most of these
scholars agree with Heidegger (1977, p. 4) that "... [e]verywhere we remain unfree and
chained to technology, whether we passionately affirm or deny it".
There is also a broad consensus from these philosophical insights that technology has
either a utopian (positive) or dystopian (negative) effect on human existence. The utopian
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view suggests that technological control over nature benefits and enhances human lives
(Idhe 1984; Kroker 1984). Various health care technologies are often publicised for benefits
that extend, liberate and enrich everyday lives. In contrast, the dystopian view suggests
that technology dominates and controls everyday life, negatively transforms the meaning
of being human, and contributes to an existential sense of entrapment (Cooper 1990;
Heidegger 1977; Idhe 1984, 1990, 1996). Further, the dystopian view critiques the
"technological consciousness" or focus that in modern societies often measures individual
worth according to the individual's ability to be socially productive (Cooper 1990, p. 35).
The resulting distortion of individual identity and subjugation of personal meaning is seen
as contributing to a sense of estrangement and alienation (Cooper 1990; Idhe 1984). In
contrast to the dualistic view of technology as utopian or dystopian, Kroker (1984, p. 15)
argues that a "technological realism" more accurately typifies everyday life. His view is
that most individuals strive for a balance between the positive benefits and the more
negative effects of technology.
At present, broad philosophical debates about technology refer to technologies that are
external to the body. The understanding emerging from the present study suggests the
ICD also has the potential to convey beneficial as well as negative possibilities for human
existence. When experienced and embodied as a friend, the ICD provides the patient and
their family with a sense of security, protection and future possibilities. Conversely, the
ICD can incur the negative sense of being occupied and controlled by an inescapable
intruder that thwarts present and future possibilities.
This study also indicates that, regardless of their immediate perception of the ICD, patients
strive to get well again and to resume living a busy life. As discussed below, patients also
revealed how specific health care practices and various medical and media discourses
influenced their comprehension of the ICD-as-experienced. The following section discusses
how the meanings derived from this engagement give rise to various ambiguities and
tensions in the patient's embodied experience.
7.3.3
Technology, nursing and the patient
Nursing's historical and social relationship with health care technology is the subject of
several scholarly analyses (e.g., Barnard 1997; Barnard & Gerber 1999; Pelletier et al. 1996;
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Sandelowski 1996, 1997, 1999). Briefly, analyses during the 1980s related specifically to the
technology of the intensive care unit. Positive reviews noted that specific forms of
technology improved the patient's possibility of surviving serious illness or injury, while
also freeing nurses from mundane tasks, such as repeatedly measuring patients' vital signs.
In this view, technology formed an "... extension of the nurse's hands, eyes, ears and other
senses" (Ashworth 1990, p. 153). Critics, however, saw much of newer technology as
dehumanising. Specific criticisms noted how it objectified the patient's body, supported
increasingly specialised and fragmented work practices and, with respect to life-saving
technologies, contributed to complex end-of-life ethical dilemmas (Hawthorne, D.L. &
Yurkovich 1995; Pelletier et al. 1996; Sandelowski 1996, 1997). Humanistic caring practices
were suggested as the means of restoring the patient's sense of dignity and reducing the
negative effects of technology. Suggested nursing practices included the use of therapeutic
touch, presencing, empathetic listening and increased sharing of information to patients
and their families (Ashworth 1990; Hawthorne, D.L. & Yurkovich 1995; Pelletier et al. 1996;
Sandelowski 1997).
Scholars of the 1990s more closely examined the occupational, political and social
significance of an increasingly technologised clinical practice. Practical, moral and
philosophical concerns were raised about the relationship between technology and
nursing's practice, education and modes of inquiry (Sandelowski 1999; Walters 1994). At
the practice level, nurses were seen as the "... primary 'machine-body tenders' in health
care" (Sandelowski 1997, p. 224). They were expected to achieve best practice standards
when using various biomedical technologies. This being able to demonstrate a sound body
of scientific knowledge, be technically skilled and competent and to make ethically
informed decisions (Hawthorne, D.L. & Yurkovich 1995; Pelletier 1992; Pelletier et al. 1996;
Sandelowski 1999). Nurses were also encouraged to actively evaluate the human impact of
newly introduced medical technologies (e.g., Pelletier 1989, 1992; Pelletier et al. 1996;
Walters 1994). Other scholars (e.g., Lawler 1991; Sandelowski 1997) appealed to nurses to
provide detailed descriptions of their practice-based understandings of the body,
embodiment and the experience of technology to help expand nursing's unique knowledge
base. Finally, because they bear witness to various ways in which technology affects the
patient's lived body, nurses were encouraged to engage in philosophical debates about the
embodied, human aspects of biomedical technology. Sandelowski (1999, p. 199) suggested
such contributions could clarify the ontological and conceptual distinctions "... between
nurse/human/subject and machine/not-human/object".
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Others scholars have also exposed the way various forms of technology have been used to
support the historical, economical and political impediments on the discipline and practice
of nursing (e.g., Barnard 1997; Barnard & Gerber 1999; Pelletier et al. 2000; Peterson 1994;
Sandelowski 1993a, 1997, 1999; Wajcman 1994). Impediments — such as acute staff
shortages, increased patient loads and acuity, and the economic imperative to fast-track
patients through the health care system — restrict the ability of nurses to achieve best
practice standards, provide humanistic care, evaluate new technologies and expand
nursing's knowledge base.
Patients in the present study discussed their experiences of the health care system in
relation to their survival of an arrhythmic event, receipt of an ICD and early recovery
period. Typically, nurses were praised for their skills with various technologies, for
addressing the patient's immediate physical needs and for explaining the clinical
environment:
Mrs G:
And the care. ... I just can't explain those nurses in ICU . And it wasn't just to
me, it was to everyone . Their level of commitment and care!
Mrs B:
The nurses had actually ... explained exactly what was going to happen, what he
would look like when he'd come down [from the theatre], that there would be lots of
tubes.
The implanting cardiologist was referred to as the expert regarding ICDs, but often seen as
too busy to be interrupted by questions. Other doctors were seen as either too busy or
having an inadequate knowledge of the ICD: There was nobody to tell you about it or just give
you a rough outline of it (Mr A). There was an often unmet expectation that nurses would
provide specific information to help patients learn to live with the ICD. Although often
helpful in other ways, nurses were generally observed to not have either the knowledge or
time to answer specific questions:
Mrs E:
The nursing staff went away and got me the books, and then said "I don't know
whether you should see this", but ... they were really great.
SR:
So, access to information from the cardiologists is hard..?
Mr C:
Yes
SR:
What about from the nursing staff? There'd be plenty of nurses ...
Mrs C:
Yes, but they're always on different shifts, and it depends whether you get one
who'll ... talk to you, whether they've got the time ... or inclination to talk. ... You
have to actually go and ask, and ... some people don't find it easy to go and ask, do
they? Who do you go and ask? Do you ask the nursing staff who are rushing
around and, if the doctor's never there-
Mr C:
I think even if the doctor's on duty there, he's ... very careful not to say, or commit
himself, anyway, because he's probably not qualified to do it.
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Mrs G:
There was a great lack of knowledge, I have a very strong memory of that. The
nurses nursing me had no knowledge at all. They were upset they couldn't tell me
anything,
Participants also expected nurses to provide needed emotional support. When it occurred,
the receipt of tender loving care [and] a kind word here and there was especially valued for
nourishing the patient's inner strength (Mrs E). It was all the more appreciated because
nurses were seen to working in particularly stressful and taxing clinical environments:
Mrs F:
[Referring to Mr F's cardiac arrest] One of the sisters actually gave me a hug. ... It
was nice to get that bit of warmth ... See, it's something about her thinking and her
feeling coming together, in the early hours of the morning. She must have been
tired, and it was a pretty traumatic thing that she had to go through, even though
she wasn't related. ... It wasn't a lengthy thing, but it made a difference [and
came] came from a deep feeling for a fellow human being who needed that extra
something at that time.. It's a feeling for another person.
Mr F:
And they were excellent, the younger nurses. ... I can't speak highly enough of
them. I was conscious that some of them were dead tired. I can remember one poor
nurse, it was about half past six in the morning, she was really out on her feet ...
There was a sort of heroism there. I've always held nurses in very high esteem.
Mrs G
[Describing a brief stay in a second hospital]. It was dreadful, quite frankly. The
nursing care was poor, and I don't blame the nurses. ... The poor Charge Sister
spent 35% of her time showing new people what was in what cupboard, because
there were new people everyday; it was not well staffed. There was no continuity;
nobody knew what they were doing. The lack of support at the bedside I think was
very difficult,
SR:
[To Mr C] You were saying before that the only criticism that you've got was that
there could perhaps be much better support for families and partners, and that-
Mr C:
Yes, and I would qualify that by saying for country patients probably more-
Mrs C:
And you find that if they do have these information group sessions, they might be
in the day time. If your spouse works, there's no way they can get there from the
country, anyway.
Other participants (Mrs A; Mr B & Mrs B; Mrs D) expressed disappointment that their
need for reassurance, empathetic understanding, or emotional support was not satisfied.
Again, inadequate professional support was attributed to busy clinical workloads and a
general lack of professional knowledge about living with the ICD.
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7.3.4
Medical discourses and the ICD
The past three decades have witnessed a rapid growth in the availability of internal
biomedical technologies designed to correct problems in the brain, pancreas, spine, bones,
eyes, ears and heart. Internal technologies associated with the heart include the ICD,
permanent pacemakers, valve replacements, cardiac assist devices, artificial hearts, heart
transplantation and intricate surgical repairs (Bronzino, Smith & Wade 1990).
Corresponding to the development of these complex technologies has been an increasing
specialisation within clinical medicine. For example, in the past 20 years the management
of patients presenting with arrhythmias has shifted from a consulting physician, to a
cardiologist and, more recently, to an electrophysiologist. As noted by participants (Mrs E;
Mr F; Mrs G), such specialisation means that other doctors with limited knowledge of
current models of the ICD risk providing outdated or erroneous information.
In the medical literature a sense of praise, awe and fascination pervades discussions about
the ICD's design, cost effectiveness and efficacy in preventing sudden cardiac death. For
example, the ICD is described by a noted cardiologist (Zipes 1994, p. 2934) as a "—
wonderfully advanced technology [that represents] the height of device creativity".
Implantation of the ICD, according to another cardiologist (Pycha et al. 1986, p. 842),
results in a "— a human-machine alliance". Fricchione, Vlay and Vlay (1994, p. 1052)
suggest doctors have "— entered a new frontier in the medical care of patients". These
doctors praise those who test this technology, noting that "— patients with implantable
mechanical devices have become bionic men and women, medical pioneers moving into
the twenty-first century" (Fricchione, Vlay & Vlay 1994, p.1058). Such comments reify the
benefits of medical technology and the symbolic power of devices like the ICD to bring
science fiction images of the technologised body into reality.
Medicine's awe and fascination with the ICD as a technology is also evident in related
clinical practices where the focus is also often directed toward the ICD's functionality. For
example, the duration of the patient's follow-up visits to their ICD clinic averages five to
ten minutes (Mr B; Mrs D) or less: You just go straight in, and probably 60 seconds later,
straight out again (Mr A). There is time enough only for the doctor to evaluate the ICD's
functions and energy reserves. Hence, patients are prevented from discussing their
experiences or concerns with the doctor most specialised in the device and its potential
side-effects or impact on everyday life:
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Mrs G:
I have the 'box' doctor. ... He calls himself the technician in this relationship. So he
won't answer any questions, and the cardiologist doesn't know [the ICD], and they
don't seem to talk to each other.
Mrs B:
It's all well and good to develop these technologies, and then give people these new
chances. But there's ... the after-effects of having these new technologies, you know,
the emotional side of things ... And I think that's what [doctors] need to look at as
well. ... You've got to look at the person, and the after-effects.
The above literature and clinical examples support recent scholarly critiques of medicine's
objectification of the body (and the patient) and a differentiation between the patient's
physical body and lived body (e.g., Bronzino, Smith & Wade 1990, p. 535; Sandelowski
1993a; Turner 1987; van Manen 1998) (e.g., Bronzino, Smith & Wade 1990, p. 535;
Sandelowski 1993a; Turner 1987; van Manen 1998). These critiques note the dehumanising
impact of treating the patient's body as a machine. Of particular concern is the view that
the body can be repaired by artificial or other human spare parts, without also adequately
addressing the patient's concerns, meanings and lived experience. Discussions and
practices related to a diagnosis of arrhythmia may of necessity need to objectify the body.
However, the priority given to the functionality of the ICD after its implantation supports
van Manen's (1998, p. 16) view that such objectification creates "... an alienated corporeal
existence" for the patient. Medical discourses about the ICD go beyond this objectification.
References to the patient as bionic or a living machine convey images that disembody the
patient as a person and disregard how, following Merleau-Ponty (1962), the patient is their
body-with-ICD.
As patients in this research noted, implantation of an ICD originally made them feel
different; encountering medical practices that principally attend only to the ICD as a
technology exacerbated that difference. Whether such practices shape or influence the
patient's perception and embodiment of the ICD is unclear from current evidence. It is
possible, however, that patients may resent the attention accorded their device, especially
if their need for information, counselling and related support issues is not addressed.
7.3.5
The influence of media discourses
Media documentaries and front page newspaper stories powerfully shape individual
awareness and understanding of various health problems, diagnostic investigations and
treatment regimes (Lupton & Chapman 1995; Peterson 1994). Heart disease is a frequent
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media topic, with almost weekly reports of new drugs, artificial heart pumps and new
successful techniques for bypass surgery or heart transplantation. In contrast, the ICD
receives relatively little media attention: it's not something you read in the paper every second
week, you know (Mr G). Not surprisingly, some patients wonder if the ICD is an
experimental treatment (Mrs E; Mrs G).
Media reports about medical treatments also convey conflicting messages. Although such
reports cite a particular scientist, institute or scientific conference to increase credibility, the
brevity of these reports make evaluation of the content difficult. Initial reports, for instance,
often avoid any mention of potential side-effects or problems (Stephenson 2000). Not
uncommonly, subsequent stories about various adverse reactions contain vivid accounts
and images of affected individuals. There is ample material for such stories. Estimates
suggest 20% to 50% of all implanted devices, incur problems such as pain, infection,
bleeding, blood clots, or mechanical defects and failure (Smith & Greeley 1991). Such
media contradictions create public anxiety, confusion and scepticism (Lupton & Chapman
1995). Media reports about faulty pacemaker leads (Mr A; Mr B) or the premature failure of
ICD batteries (Mrs E) compound concerns about the ICD's reliability.
Media images, in the form of televised medical shows, impact on patients in other ways.
Patients may use these images to help explain the ICD's functions to friends and
colleagues. Conversely, however, televised science fiction images of the technologised
person frame how others view the patient. Their references to the patient as being a six
million dollar person (Mr F) or bionic woman (Mrs E) reflect their sense of awe at the
patient-with-ICD. For the patient, being seen as different or objectified because of the ICD's
presence makes it more difficult to retain a sense of identity and subjectivity. The
possibility of being shocked in public further undermines the patient's efforts to avoid
being seen as different.
This discussion noted the ways in which nursing, medical and media discourses reflect an
awe and fascination with various forms of health care technology, including the ICD.
These discourses however reveal little about the patient's embodied experience of the ICD.
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7.3.6
The ambiguity of the ICD-as-experienced
Contrasts between nursing, medical and media discourses and the patient's experience
suggest various ambiguities in the patient's comprehension of living with an ICD. Specific
examples discussed here relate to understanding the body-with-ICD and the ICD's
relationship to existence, death and dying.
7.3.6.1 The ambiguity of the body-with-ICD
The ICD's presence illustrates what Merleau-Ponty (1962) referred to as the ambiguity of
the body, or the distinction between the physical, impersonal or object body and the
unified, lived self. The lived self provides and derives meaning in and through the
individual's worldly activities, or their being-in-the-world. Despite the promise of the ICD
to restore the security needed for the unified self, initially its spatial presence and
functionality serve to highlight the physical body's unreliability and susceptibility to
cardiac arrhythmias. The ICD's presence becomes an obvious reminder of the body's
reliance on technology for survival.
Time, trust in the ICD and the absence of adverse events usually eases awareness of both
the body and the ICD as physical objects. Within the context of the patient resuming a
busy life and a growing sense of complacency, the ICD is often perceptually integrated and
embodied as a friend. Being comfortable and at home with the ICD, such that it is possible
to forget or pass over the body and even the ICD, signify the reunification of the lived self.
However, other patients resume their everyday activities yet experience the ICD as an
enduring, inescapable source of distress that alienates their lived or embodied self.
Meaningful existence in this context is bounded by the inability to trust either the physical
body or the device. The device occupies their life as an unwelcome and resented intruder
that limits their possibilities and an embodied sense of self.
7.3.6.2 The ICD and the ambiguity of existence
Arrhythmias mark the patient's life as indeterminate, tenuous and with a poorly defined
recovery or survival trajectory. The unfamiliar ICD diminishes but does not abolish the
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threat to the patient's life. Patients nonetheless resiliently strive to suppress their anxiety,
increasing their activities and despite some risk, extend their confidence. Trust in the ICD's
reliability as a protective friend helps to extend this confidence.
The ICD can, however, also betray the patient's trust. Distressing shocks and its potential
to interfere in the patient's dying reflect its intrusion into living, being and death. The
patient in this situation faces the dual vulnerability of arrhythmic risk and having an
implanted device that destroys confidence and the hope of a positive embodied existence.
Such an outcome disputes the medical view that ICD implantation results in a bodymachine alliance.
7.3.6.3 The ambiguous relationship: The ICD and death
Medicine is said to be a profession obsessed with preventing death, yet one which also
treats death as if it is a taboo subject (Bronzino, Smith & Wade 1990, p. 544; Riper 1994).
The body of literature about the ICD seems to support this claim. The extensive data about
the technological efficiency of the ICD promote its success in correcting life-threatening
arrhythmias and thus reducing, or even defying, the risk of sudden cardiac death.
In contrast, the medical literature offers little discussion about the cessation of the ICD as
an active treatment, either at the patient's request or when doctors decide the device no
long offers the patient a therapeutic benefit. There is thus little advice on resolving difficult
social and ethical issues related to living with an ICD. For example, how can a patient die
with dignity when they have a fully functioning ICD in their body? What is the likely
manner of their dying and death? How can they make unimpeded end-of-life decisions?
Indications from the participants in this research were that neither their doctors nor the
ICD information booklets discussed death. Family members also resisted the patient's
efforts to discuss an anticipated demise and the desire to make appropriate end-of-life
decisions.
Despite the professional silence on death, the experience of living with an ICD is indelibly
structured by a heightened consciousness of the tenuous thread between life and death.
The existential notion of being-toward-death, of accepting the inevitability of death, frames
the patient's life. As that which keeps premature or unexpected death at bay the ICD is
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highly valued for facilitating a meaningful and productive life. However, regardless of the
ICD's presence, and the probability of not making old bones (Mrs E), patients accept the
inevitability of death. Hence, they avoid wasting time on trivial issues, and focus attention
on satisfying and enriching activities.
The desire for quality in life implicitly includes the universal desire (Riper 1994) for a
dignified death, free of pain, distress and mechanical intervention. However, such is the
ICD's power that it may be perceived as potentially preventing a dignified death. Without
professional assurances to the contrary, considerable anticipatory distress occurs if the
patient believes that death will only occur after the ICD exhausts itself through multiple
shocks (Mrs G). Accusations of taking the euthanasia path where you, you know, switch off life
support (Mr G), clouds the patient's desire for elective ICD cessation with guilt and distress.
The expanding population of patients with an ICD increases the imperative for
professional debates about the patient's death in the context of living with an ICD. These
debates require frank discussions about issues including the patient's right to make
competent, informed end-of-life choices (Riper 1994), elective ICD cessation and
euthanasia.
7.3.6.4 Living with an ICD: Professional and patient views
Professional publications about living with an ICD reflect three themes. The first theme is
the educational value of detailed descriptions relating to the ICD's development, actions
and effectiveness, surgical insertion procedures and potential problems. There is extensive
medical evidence of patient outcomes, with specific reference to physical experiences,
psychosocial problems, quality of life and mortality rates. Nursing literature supports this
evidence, while also offering more qualitative insights into the patient's experiences. Little
is mentioned about the embodied experience of the ICD.
The second theme, inherent in nursing literature, is an unchallenged conceptualisation of
living with an ICD as a chronic illness, that is, a permanent and disabling mode of
existence (e.g., Burke 1996; Burke, Rodgers & Jenkins 1992; Dunnington et al. 1988; Motzer
& Stewart 1996). For example, Burke's (1996, p. 352) excellent grounded theory analysis of
ICD acceptance begins with this assumption:
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... the ventricular dysrhythmia population, when treated with ICD therapy alone
or in combination with antidysrhythmic medications, has become a fast-growing,
long-term, chronically ill population.
This professional assumption contrasts with patient perspectives. Regardless of their
medical conditions, or inability to perceptually accommodate the ICD, patients strive to
resume productive lives. They strongly deny the sense of disablement implied by a chronic
illness account of their situation.
The third theme, prominent in medical literature, is that living with an ICD is a bionic or
machine-body alliance. This suggests a transition from the traditional medical view of the
body as a machine-like object, to a view of the body as a technologised object or artifact
(Bronzino, Smith & Wade 1990). The interchangeability or replacement of body parts
symbolically merges science fiction imagery with the cyberspace notion of the cyborg. The
term 'cyborg' — derived from the terms 'cybernetic' and 'organism' — signifies a
synthesised product that is part machine, technical or artificial and part living, human and
flesh (Turner 1992). Suggestions that ICD implantation creates a machine-body alliance
and, in effect a bionic technologised object, further marginalises and dehumanises the
patient's embodied self. Suggestions from participants in this study indicated this attitude
is reinforced when clinicians focus their interest on the ICD, while seemingly ignoring the
patient's embodied experience.
Professional conceptualisations of living with an ICD, either as a chronic illness or as a
technologised being, contrast with the patient's embodied understanding. Having
overcome existential threats arising from surviving arrhythmias and EPS, and the lack of
attention to their embodied experiences, patients resiliently strive to move forward in their
recovery. Most are able to accept and integrate the ICD as a life-saver and friend. Time and
trust in its presence ease their sense of being different, restore a unified sense of being
human, and facilitate existentially meaningful possibilities.
Similar disparities between professional and patient conceptualisations occur in relation to
the use of other medical technologies, including renal dialysis (Plough 1986), Therapeutic
Plasma Exchange (Koenig 1988) and various cardiac devices (Bronzino, Smith & Wade
1990). It has been suggested this disparity arises from the dual goals of medicine to
provide therapeutic care, and providing quantitative or empirical research to extend its
knowledge (Bronzino, Smith & Wade 1990; Riper 1994; Toombs 1992). Understanding how
patients encounter, live with and make sense of the ICD will provide health professionals
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with insights into its actual and symbolic significance for human existence, identity and
the self.
7.4
Summative comments
As summarised in Figure 7.2, this interpretive understanding of the ICD-as-experienced
explored two directions, namely the immediate perception of the ICD and, second, its
comprehension within the context of attributed social significance and meaning.
Figure 7.2:
Mediated meaning of the ICD-as-experienced
Immediate perception
Worldly horizons of meaning
Perceiving and experiencing the
ICD’s presence, power & potential
Comprehending the ICD and
related experiences: being-in-theworld; ideologies, beliefs, practices
• Anticipating the ICD
• Being in awe of the ICD
• Experiencing the ICD as:
• Technology and human existence
-Accepting, appreciating,
embodying ICD as friend
OR
• The health care system
Nursing
Medicine
• The media
-Being occupied, controlled,
alienated: rejecting ICD as intruder
↓
Embodied understanding of
the ICD as a friend or
intruder
↓
Interpreting the ICD: a
lifesaving or an alienating
technology
First, this chapter disclosed how the perception and bodily experience of the temporal,
spatial, relational and corporeal aspects of the ICD change over time and with respect to
various ICD-related events. In addition to impacting on the patient's past and present
sense of self and being, these particular qualities frame envisioned possibilities for an
authentic existence, personal choices and a future death.
Most patients perceive the ICD as providing the reassuring security needed to resume a
meaningful and existentially authentic existence. For them, perception of the ICD involves
acceptance, appreciation, connection or integration, and its embodiment into the self as a
reliable, trustworthy friend that promptly responds when needed. Alternatively, the ICD
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may also manifest as an artificial object that occupies and controls the body, diminishes the
quality of life and becomes a threatening and unwelcome intruder. This outcome,
identified as an existential rejection of the ICD, underpins the desire for cessation of its
presence in their body and their life.
The second part of this interpretation suggested that comprehending or making sense of
the ICD-as-experienced occurs within and against an horizon or background of meaning.
In particular, given the ICD is an implanted technology and the patient's necessary
involvement in the health care system, this section examined general discourses about
technology, related clinical practices, and various professional and media views on cardiac
technology. These discourses contributed to the ambiguity of the ICD-as-experienced and
to disparities between patient and professional views about living with an ICD.
Finally, this interpretation suggested the ICD is not a neutral life-saving technology
implanted into the physical body. Rather, its varied manifestations both endow and are
ascribed meanings that change with time, context and significance for the self and others.
The divergent comprehension of the ICD as either a friend or as an intruder is in keeping
with philosophical views of technology being either utopian or dystopian in nature and
impact. Further, comprehension of the ICD involves a search for meaning amidst various
paradoxes, tensions, and ambiguities in everyday lived experience. This search for
meaning includes making sense of having an implanted device that can be experienced as
a potential life-saver that positively extends life or, conversely, an alienating technology
that negatively impacts on existence. The ICD's presence, purpose, power and potential
directly influence the patient's sense of identity and integrity. At a more ontological level,
the ICD impacts on the sense of being, in and through its understood significance for the
body, existence, dying and death. Living with an ICD — as explored through the ICD-asexperienced — comprises the embodiment of an implanted cardiac device either welcomed
as a friend that extends meaningful possibilities, or rejected as an unwanted intruder that
thwarts authentic possibilities and a meaningful existence. Living with an ICD does not
simply mean having a technological life-saving object implanted into the body. Rather, in
and through embodied perception and comprehension, the patient becomes and is their
body-with-ICD.
The next chapter reviews the significance and relevance of this previously unreported
understanding of the embodied significance of the ICD, and the preceding understanding
of the nature and meaning of being a patient (Chapter 5) and of being a partner (Chapter
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6). The final section of the thesis draws on this cumulative understanding and specific
suggestions from participants to several recommendations for improving clinical practice.
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SECTION
C
Signifying:
Study Implications
196
CHAPTER EIGHT
DISCUSSION
8.1
Introduction
This exploration of living with an ICD originated from early 1990s concerns about the
dearth of information about the experience of Australian patients with this device and
their partners. These concerns resulted in the 1995 start of this project to provide
information about the ICD program in the State of Victoria (Chapter 1.3.2). The first part of
the project involved a State-wide survey of patient outcomes and experiences after ICD
implantation (Reid, McKinley & Nagy 1999). Similar studies have since been reported in
the States of Western Australia (May et al. 1995) and New South Wales (McKinley et al.
1997).
The second part of the project, the present hermeneutic phenomenological study, explored
the experience of living with an ICD (Chapter 1.3.3.2) by addressing the following research
questions:
•
What is the nature and meaning of being a patient with an ICD?
•
What is the nature and meaning of being a partner in this situation?
•
How is the ICD as a surgically implanted device perceived, bodily experienced,
understood, and integrated?
The philosophy and practical ideas in van Manen's (1990) account of hermeneutic
phenomenology (Chapter 3.3) provided appropriate guidance for exploring and
understanding this human experience. Tape-recorded conversational interviews with
seven Victorian patients and six partners provided rich experiential descriptions of living
with an ICD (Chapter 3.4). Transcripts of these descriptions were subjected to three levels
of analysis (Chapter 3.5).
The first level of analysis produced summative descriptions of the varied aspects,
meanings and interactions involved in each participant's experience (Chapter 3.5.2,
Chapter 4). The second level of analysis shifted the focus of understanding from individual
197
experiences, to the collective experience of patients and of partners. Written, thematic and
reflective processes (Chapter 3.5.3) resulted in detailed phenomenological descriptions of
the lived experience of Being a Patient (Chapter 5) and of Being a Partner (Chapter 6).
These descriptions addressed the first two research questions. The third research question,
addressed through a hermeneutic analysis (Chapter 3.5.5), resulted in an interpretive
account of the ICD-as-experienced (Chapter 7). This account explored the perception,
integration, embodiment and comprehension of the ICD within the context of various
nursing, medical and media discourses about biomedical technology.
This chapter reviews the understanding and information disclosed in the preceding
phenomenological descriptions. Specific reference to the related literature discusses
practical and theoretical ways in which this study offers nurses, doctors and others and
extended understanding of living with an ICD. This task was undertaken with caution.
Unlike many research modes of inquiry, phenomenological descriptions cannot be used to
support generaliseable, predictive or explanatory conclusions about particular events,
relationships or outcomes (van Manen 1990). The specific intent, as with the study, was to
provide insightful descriptions that contribute to an extended understanding of this
human phenomenon.
Two other issues frame this discussion. First, the main aspects presented in each
phenomenological description are summarised. Although satisfying a practical review
need, such a process poses a theoretical dilemma. Van Manen (1990) argues that the
understanding embedded in a phenomenological description cannot be summarised.
Rather, understanding requires and emerges through the reader's engagement with the
detailed descriptions of the nature, nuances and meanings of the phenomenon (van Manen
1990, 1997).
Second, this discussion involved a further review of the professional literature. The initial
review (Chapter 1.2.3; 2.2.5) noted that knowledge of patients' experiences derived mostly
from studies examining the specific issues of physical and psychological complications,
being shocked, coping strategies, quality of life, or resuming employment or driving.
Knowledge of partners primarily focused on their psychosocial concerns. The only related
phenomenological study by Doolittle and Sauv? (1995) explored the experience of the
patient's survival from a cardiac arrest with 40 patients and their partners experiences.
Although 28 patients received an ICD, there was no discussion of its impact for patients or
partners. In contrast, useful qualitative insights akin to those presented in Being a Patient
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(Chapter 5) were provided in Burke's (1996) grounded theory analysis of the adjustment to
the ICD for 24 patient (10 female, 14 male; aged 22–78 years). All patients had their ICD
electrodes or leads implanted transvenously, thus avoiding the major chest surgery
experienced by five patients in the present study. Burke's (1996, p. 352) analysis of the data
obtained from sequential interviews revealed the core process of ICD acceptance was
"Securing Life Through Technology Acceptance". This process included the categories or
phases of "— choosing life with technology, integrating technology into life, and living
through technology" (Burke 1996, p. 352). Patients progressively aspired toward the goal of
"living", with the progress of their recovery shaped by their deliberate actions, and by the
collaborative practical involvement of health professionals (Burke 1996). As discussed in
the first section of this chapter, there is some overlap between these phases and the
thematic description of patients' experiences in this study.
8.2
Question 1: The nature and meaning of being a patient
8.2.1
Overview
The phenomenological description of the nature and meaning of Being a Patient (Chapter
5) addressed the first research question. The mean age of patients was 55 years and thus
was similar to the average age (range, 56.5 – 64.5 years) of other Australian and overseas
patients in other Australian and overseas patients (Bainger & Fernsler 1995; Bremner,
McCauley & Axtell 1993; Burke 1996; Craney et al. 1997; Davis & Dunbar 1996; Dougherty
1995; Dunbar, Warner & Purcell 1993; Finch et al. 1993; May et al. 1995; McKinley et al.
1997; Reid, McKinley & Nagy 1997).
Most related studies focused on patients’ experiences within the first 12 months of ICD
implantation. Having lived with an ICD for between 4 and 70 months, patients in this
study described the experiential transitions and specific life events that occur with the
passage of time. Thematically, these changing dimensions were identified as being
disrupted, reconstructing life, appreciating and celebrating life, and accommodating the technology.
Meanings pertaining to bodily awareness, vulnerability, personal control and making
sense of the ICD permeated each thematic dimension (Table 5.1). The following discussion
reviews these dimensions and their meanings within the context of the related literature.
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8.2.2
Being disrupted
The theme of being disrupted referred to the upheaval, vulnerability and uncertainty
inherent in surviving life-threatening arrhythmias. No patient in this study, or that
conducted by Sneed and Finch (1992), reported experiencing out-of-body or paranormal
sensations at the time of their arrhythmias. Such strange and sometimes upsetting or
troubling experiences have been reported by 40% of other patients (Badger & Morris 1989;
Finkelmeier, Kenwood & Summer 1984). In contrast, expressions of disappointment at
being resuscitated (Mrs G) are rarely reported. The one exception is mention of a similar
comment expressed by two of 60 patients in an early study of the experience of a cardiac
arrest (Finkelmeier, Kenwood & Summer 1984). However, experiences of paranormal
sensations associated with an arrhythmic event, or the disappointment at being
resuscitated may be under-reported. Patients may find it difficult to report or discuss such
experiences with busy clinical staff, or with worried family members who possibly enabled
the patient's survival.
Being disrupted in part reflected how arrhythmias betrayed the body and created a sense
of uncertainty. The theme also reflected the encumbrances associated with being
hospitalised, experiencing diagnostic investigations such as the EPS, learning of the need
for an ICD and enduring the pre-implantation wait. Patients commonly reported a sense of
helplessness, physical exhaustion and emotional distress, which made it more difficult to
grasp the significance of the arrhythmia and ICD. For some patients, this treatment also
involved trials of anti-arrhythmic drugs. Other survivors of an arrhythmic collapse
similarly report considerable distress, exhaustion and uncertainty (Caplin & Sexton 1988;
Dougherty 1994, 1997; Orzeck & Staniloff 1987; Teplitz, Egenes & Brask 1990; Titler, Cohen
& Craft 1991).
Patients in this study endured various investigative procedures. The EPS most vividly
remembered. The induction of further ventricular arrhythmias both confirmed their
arrhythmic vulnerability and incurred considerable distress, fear and sense of impending
death (Chapter 5.2.2). Patients prescribed antiarrhythmic drugs dread their repeated EPS,
with one patient (Mrs D) likening it to visiting the chamber of horrors. Such vivid
recollections challenge the medical view that patients are usually "... well sedated" during
this procedure (Fricchione, Vlay & Vlay 1994, p. 1053) and early nursing account
suggesting the cardiac laboratory exuded a "... soporific atmosphere" (Tyndall 1983, p.
200
627). Elsewhere, similar reports of EPS-related fears, anxieties and need for reassurance
remain common (Badger & Morris 1989; Beckerman, Grossman & Marquez 1995; DeBasio
& Rodenhausen 1984; Finesilver 1978; Fricchione, Vlay & Vlay 1994; Menza, Stern &
Cassem 1988). Another source of concern is the cardiologist's use of the term "failing the
EPS". Doctors use this phrase when explaining how the patient's heart failed to resist the
induction of an arrhythmia. For clinicians, the term conveys a shared diagnostic and
physiological meaning. For patients, the term denotes their inability to retain control over
the body and heart and, symbolically, a loss of control over that which is ordinarily viewed
as the core of existence and being. Increased awareness of the patient's experience of the
EPS is needed to ensure implanting cardiologists, nurses and laboratory technicians
minimise any associated distress or ambiguous explanations.
Being disrupted involved making sense of the ICD, a previously unknown device for all
patients in the present study. Initial explanations from the implanting cardiologist often
emphasised the patient would probably die within two to three years without the device.
Patients accepted it because it was the only available treatment. One patient (Mrs G)
expressed reservation about its cost and its implantation in her body. She reluctantly
agreed, after receiving considerable pressure from her family and medical staff. Her
perceived lack of choice persisted many years later: Can you imagine signing an informed
consent for something you knew nothing about? It was a joke, and yet you're cornered (Mrs G).
Patients in Burke's (1996) study, in contrast, described a more deliberate act of deciding to
accept an ICD, perhaps reflecting the availability of a collaborative process of information
sharing. For example, Burke (1996, p. 357) notes that patients engaged in "... realistic
conversations about the positive and negative aspects of living with an ICD with health
care professionals, family members and ... other patients". According to Burke, patients
could thus make an informed, deliberate choice about the ICD as the best option for their
survival and quality of life. Such a deliberate choice of the technology was seen as
enhancing its later integration and incorporation In everyday life (Burke 1996).
Several factors contributed to the wide variation in the duration of the pre-implantation
waiting time reported by patients in this study. Three patients who received an abdominal
ICD in the early 1990s waited between 18 and 24 weeks at home. They described a
challenging and vulnerable day by day existence of monitoring the body's symptoms and
responses to various activities, being watched by others, trying to learn about the ICD and
remaining optimistic. Patients who waited at home received little professional advice
about symptom management, or strategies for coping with their fears, anxiety and
201
apprehension. Two later recipients of a pectoral device respectively waited one and three
weeks in hospital. They also described uncertainty and apprehension compounded by
limited access to accurate information about the device and its likely impact on everyday
life (Chapter 5.2.4). There was no opportunity to meet other recipients of an ICD.
Similar to other Australian patients who received an ICD in the early to mid-1990s
(Gallagher et al. 1996; May et al. 1995; Reid, McKinley & Nagy 1999), no patient had access
to either a formal education or support program. Yet the recommendation for a "... welldesigned educational program" (Pycha et al. 1986, p. 845) is frequently repeated in the
related literature. There is also extensive advice about the content of such a program (e.g.,
Brannon & Johnson 1992; Collins 1994; Cooper, Valladares & Futterman, 1987; Dunbar,
Warner & Purcell 1993; Knight et al. 1997; Moser, Crawford & Thomas 1988, Schaefer,
Chicca & Fisher 1992; Veseth-Rogers 1990). This advice acknowledges that patients need
considerable information about arrhythmias, the ICD, symptom management and daily
activities of living. Reinforcement of this information is often needed because emotional
distress and post-arrhythmic cognitive deficits may impede its comprehension and
retention (Dougherty 1994, 1997; Fricchione, Vlay & Vlay 1994; Kuiper & Nyamathi 1991;
Sauv? 1995; Sneed & Finch 1992).
Several factors have markedly reduced the duration of the pre-ICD waiting period during
the late 1990s (Chapter 2.2.2). Such practice changes increase the imperative for patients to
receive a structured pre- and post-implantation education program of information, advice
and support.
8.2.3
Reconstructing life
The theme of reconstructing life encapsulated the patient's experience of the peri-operative
and early recovery periods after ICD implantation. This was a time of considerable
learning about the ICD and about the body's response to its presence. The need to protect
the ICD featured prominently in the education offered by medical and nursing staff and in
the manufacturer's patient information booklet. Patients were advised to avoid
electromagnetic or high voltage energy sources that might interfere with the ICD's
functions (Chapter 5.3.3). This involved much learning. As discussed earlier (Chapter
2.2.4), there are many sources of interference in the home, workplace and external
202
environment (Embil et al. 1993; Ferrick et al. 1991; Karsen, Grace & Denes 1989; Man et al.
1993; Moser, Crawford & Thomas 1993; Schaefer, Chicca & Fisher 1992). Patients were also
instructed to have their device regularly checked by the staff of the ICD clinic.
There was little education about wound or related pain management. Recipients of an
abdominal device described being unprepared for the amount of abdominal and chest
wound pain and the localised uncomfortable swelling around the newly implanted large
generator. These discomforts subsided after a few weeks. These patients were also illprepared for the generalised soreness, fatigue, back ache, sleep disturbances and emotional
reactions (fears, anxiety, insecurity and uncertainty) that often persisted for several months
(Chapter 5.3.4; 5.3.6.3). Such experiences have, however, been extensively described for
more than a decade in other patients with an abdominal ICD (Burke 1996; Cooper et al.
1986; Dubin et al. 1995; Pycha et al. 1990; Sneed & Finch 1992; Vitale & Funk 1995). In
contrast, the two recipients of a pectoral device expressed surprise at their lack of
anticipated pain and localised discomfort around the generator. Possibly due to less
invasive surgery (Fitzpatrick et al. 1994; Trappe 1996), both patients made a quick recovery
and felt back to normal within four months or less. Neither mentioned the shoulder pain,
restricted arm mobility or protruding electrodes noted by others who receive a pectoral
device (Burke 1996).
There was also little pre-discharge advice received about exercise, diet, symptom
recognition, or strategies for learning to live with an ICD. Patients described the need to
adjust to the uncertainty and awe of the ICD's unfamiliar presence and use trial and error
techniques for symptom management. The cumulative impact probably delayed their
ability to trust the ICD. Patients used various strategies to nurture their confidence and
motivation, including optimism, short-term focused goals, diversional distractions, a
philosophical sense of acceptance, and carrying a mobile telephone. Similar strategies
during the early recovery period are commonly adopted by other patients (Burke, Rodgers
& Jenkins 1992; Craney et al. 1997; Doolittle & Sauv? 1995; Dougherty 1994; Keren, Aarons
& Veltri 1991; Kuiper & Nyamathi 1991; LŸderitz et al. 1994; Sneed & Finch 1992).
No patient in this study participated in a perioperative psychiatric assessment program or
received psychological counselling. The use of such interventions in American
implantation centres aims to reduce the psychological impact of living with an ICD
(Dougherty 1997; Fricchione, Olson & Vlay 1989; Fricchione, Vlay & Vlay 1994; Morris et
al. 1991; Pycha et al. 1986; Teplitz, Egenes & Brask 1990; Thomas & Moser 1993).
203
One patient in this study suffered a device-related complication, namely the need for
device replacement after the premature depletion of the ICD generator battery (Chapter
5.3.6.3). In contrast to others who experience this complication (Fricchione, Vlay & Vlay
1994; Sneed, Finch & Leman 1994), this patient remained confident about her ICD,
principally
because
of
her
cardiologist's
reassuring
explanations.
Elsewhere,
approximately 37% of other patients experience this or other device complications, that
include inappropriate shocks, generator migration into adjacent tissues, sensing problems
and infection of the ICD system (Nunain et al. 1995). As noted earlier (Chapter 1.2.3), the
origins, signs and symptoms, diagnostic tests and treatment of such complications are
extensively reported, but considerably less is known about the patient's experience.
Patients and partners in this study shared a sense of social isolation directly attributed to
not meeting others in a similar situation. Participants deliberately avoided seeking support
from friends and colleagues in the early weeks after the implantation of the ICD (Chapter
6.2.6). Besides struggling to comprehend their own situation, they lacked the emotional
resources required to educate and reassure others about arrhythmias and the ICD, answer
awkward questions or discuss their own vulnerability. Another source of isolation arose
when family members resisted the patient's later efforts to discuss end of life issues
(Chapter 5.4.1.3). Reports of reduced social contact, loneliness and feelings of isolation
have similarly been experienced by others who have an ICD (Cooper et al. 1986; Vitale &
Funk 1995).
Recent evidence demonstrates the positive impact that social support contributes to
recovery from a range of cardiac illnesses, including ICD implantation (Brezinka & Kittel
1995; Burke 1996; Doolittle & Sauv? 1995; Dunbar, Porter, Jenkins, Hawthorne, Dudley &
Davis 1996; McCauley 1995; Hildingh, Fridlund, Segesten 1995; Moser 1994; Morris et al.
1991; Rankin 1992). Benefits include a reduced incidence and severity of psychological
problems, and increased self-esteem, perceived control and physical functioning. Such
evidence supports the provision elsewhere of professionally organised support groups that
provide ongoing education, counselling and contact with other patients and partners (e.g.,
Aarons & Veltri 1993; Badger & Morris 1989; Burke 1996; DeBorde, Aarons & Briggs 1991;
Doolittle & Sauv? 1995; Fricchione, Vlay & Vlay 1994; Molchany & Peterson 1994; Teplitz,
Egenes & Brask 1990). Reported benefits include reduced levels of anxiety, concern and felt
isolation, and an increased sense of confidence and belonging from mutually shared
experiences.
204
More information is needed about the issue of social support for patients with an ICD,
especially for those without access to, or unable to attend, a support group. There is also a
recognised need to understand the reluctance of many patients to access available social
support resources (Dougherty 1994, 1995; Kuiper & Nyamathi 1992). Concerns noted in
this study and elsewhere (Vitale & Funk 1995) suggest this reluctance reflects a poor public
awareness of the ICD, and the patient's desire not to be seen as different. Clinicians might
consider increasing public awareness of the ICD by providing the patient with educational
literature to give to family members, friends and colleagues. This leaflet could simply
explain arrhythmias and the ICD, discuss the stresses faced by patients and partners and
suggest appropriate forms of social support.
For the patients in this study, being able to drive was particularly important because it
facilitated the resumption of various social and productive activities. There was, however,
little consistency in the types of driving restrictions imposed by the same doctor on
different patients, or by different doctors for the same patient (Chapter 5.3.5). Patients
frustrated with these restrictions often defied medical advice and again drove when they
felt safe and well. None reported any traffic accident associated with an arrhythmic event.
The issue of driving by patients with an ICD has received extensive attention in the
literature (e.g., Beauregard et al. 1995; Craney & Powers 1995; Finch et al. 1993; Jung &
LŸderitz 1996c; Keelan et al. 1995; Larsen et al. 1994; Reid, McKinley & Nagy 1999; Trappe,
Sch?hl, Wenzlaff 1995; Zilo, Luceri & Vardeman 1994). Many similarities are evident
between the driving practices of patients in the present study and patients elsewhere.
Other patients also receive variable medical advice against driving, with restriction periods
ranging from never driving again, to a waiting between one and twelve months. This
literature notes that most (70%–90%) other Australian, German and American patients also
defy their doctor's advice not to drive. Despite 4% to 7% of patients being shocked while
driving the incidence of related accidents is low (Jung & LŸderitz 1996a).
The imposition of driving restrictions reflects various medical, legal and ethical opinions
on the public safety aspects of the patient's arrhythmic risk (e.g., Anderson & Camm 1994;
Finch et al. 1997; Jung & LŸderitz 1996a, 1996b, 1996c; Petch 1996; Trappe, Sch?hl &
Wenzlaff 1995). The complexity of current opinion and variable advice underpins the
recognised need for more uniform, evidence-based guidelines about patient driving (Jung
& LŸderitz 1996a). This recognition also takes account of patients' actual driving practices,
the low incidence of related accidents, recent advances in ICD technology and the
proposed prophylactic use of the ICD (Jung & LŸderitz 1996a). It is imperative that staff
205
offer appropriate advice, explanations and counselling with respect to the imposition of
driving restrictions. An initial assessment of the patient's pre-ICD driving practices, work,
and social commitments in their initial pre-implantation assessment will facilitate these
tasks.
The patient's need to be productive through paid work, voluntary community activities, or
home based family activities was another important aspect of reconstructing life for
patients in this study. One patient's decision to retire was hastened because high electrical
energy fields in his workplace posed a risk to his ICD. Two other patients, who obtained
less stressful jobs, did not mention the ICD to prospective employers (Chapter 5.3.5.1).
Being productive brought financial benefits (if in paid work), increased self-esteem and
made it possible to give something back to society for the received ICD and health care.
This perceived social obligation has not previously been reported. Despite a mean age of
63 years, most (77%) Victorian patients return to work (Reid, McKinley & Nagy 1999). This
compares to figures of 60%-80% among patients in America and 55% in England
(Anderson & Camm 1994; Bainger & Fernsler 1995; Dougherty 1995; Dubin et al. 1995;
Fricchione, Vlay & Vlay 1994; Kalbfleisch et al. 1989). It is possible that the 12 month
driving restriction imposed on English patients limits their ability to resume work
(Anderson & Camm 1994). Other factors likely affect re-employment include the nature of
the patient's job, safety related issues for the patient, other people and property, and the
impact of the workplace environment on the ICD's functions. Although not available to
patients in this study, professional counselling and workplace site inspections by technical
consultants benefit other patients. Reported outcomes include the patient's earlier return to
work, reduced employer bias, work colleagues who are informed about the ICD and
reduced environmental risks to the ICD (Embil et al. 1993; Miller 1993; Teplitz, Egenes &
Trask 1990). Initial assessment of the patient's employment situation will encourage
appropriate pre-discharge counselling and early identification of workplace changes.
Another aspect of reconstructing life involved being in awe of the ICD and making sense
of its ability to correct life-threatening arrhythmias and prevent sudden death. All but one
patient was shocked at least once, with the experience varying according to the number of
shocks received and the patient's conscious state (Chapter 5.3.6). As with most other
patients (Dunbar, Warner & Purcell 1993; Tofler et al. 1995), the shocks occurred between 8
am and midnight. The experience of a single shock for conscious patients was described as
an instantaneous, but disconcerting punch, blow or jolt that brought minimal discomfort
and less pain than anticipated. Being shocked was a vivid reminder of a continuing
206
arrhythmic vulnerability, but the associated anxiety soon dissipated. Patients were relieved
at the speed with which they could resume light activities and also reassured about the
ICD's effectiveness and reliability. Elsewhere, other patients receiving a single shock
describe very similar experiences (Badger & Morris 1989; Burke 1996; Cooper et al. 1986;
Dougherty 1995; LŸderitz et al. 1994; Sneed, Finch, & Leman 1994). Little has been
reported about the experience for patients who are unconscious at the time of receiving
multiple shocks. One patient in the present study subsequently noted the concern of
bystanders who witnessed him being shocked. Relieved that the ICD intervened with lifesaving shocks, he persuaded the cardiologist to adjust the ICD to intervene with earlier
shocks. He hoped this would minimise his risk of unconsciousness and loss of control
during future arrhythmic events. Being shocked also motivated patients to reduce the
stress, tiredness, or excess physical exertion they believed pre-empted their shock(s)
(Chapter 5.3.6.1).
In contrast, the receipt of multiple shocks while conscious, as described by one patient (Mr
B), was an emotionally distressing and physically painful experience. The associated pain
increased in severity with each additional shock. This patient was unaware the ICD could
deliver more than one shock and assumed he was dying. His emotional distress
contributed to an omnipresent dread of any future shocks, anxiety-related panic attacks
and depression, which in turn negatively affected his quality of life, well-being and marital
relationship (Chapter 5.3.6.2). Professional awareness of what it is like to experience
multiple shocks while conscious is restricted to clinical case reports (e.g., Bremner,
McCauley & Axtell 1993; Cucci in Benner & Wrubel 1989; Davis et al. 1996; Dougherty
1994, 1995; Dunbar, Warner & Purcell 1993; Pycha et al. 1986; Sneed & Finch 1992). These
reports also describe the distress of increasing pain intensity, helplessness, dread and fears
movements will induce more shocks. Early intensive professional counselling reportedly
reduces the psychological impact of multiple shocks for patients who are conscious. It was
not offered to the above patient.
Seemingly contradictory evidence is presented in the literature about the nature and
significance of being shocked. For instance, there is some evidence that being shocked does
not increase patient anxiety (Keren, Aarons & Veltri 1991). Contradictory evidence
indicates that for 25% to 47% of patients the associated pain and distress leads to fears
about future shocks, anxiety, sleep disturbances and depression (Bainger & Fernsler 1995;
Dougherty 1995; Dunbar, Warner & Purcell 1993; LŸderitz et al. 1994; Pycha et al. 1990;
Sneed & Finch 1992). Clearer interpretation of these perspectives requires more data about
207
the factors likely to impact on the shock experience, including the patient's conscious state,
type of ICD, the number, type and strength of ICD shocks in each episode, and the
frequency of being shocked. It has been suggested that conscious patients receiving
frequent single shocks suffer similarly distressing fears to patients who receive multiple
shocks (Fricchione, Vlay & Vlay 1994, p. 1052).
The type of ICD in use may also influence the experience of being shocked. Prior to 1990,
ICDs offered only one or more maximum joule defibrillating shocks. Recent devices
include overdrive antitachycardia pacing (ATP), and low joule cardioverting shocks. The
ATP option reverts most ventricular tachycardia episodes, thus reducing the incidence of
being shocked. If the ATP fails, the cardioverting shock(s) may avoid more powerful (and
painful) defibrillating shock(s) (Estes et al. 1994; Trappe 1996). More knowledge and
clinical awareness is needed of the varied experiences of being shocked. Clinicians should
carefully assess the patient's immediate emotional and physical reactions to being shocked
and implement supportive, intensive counselling to reduce any lasting negative effects.
Insights from this study suggested that gender altered how patients experienced the
dimension of reconstructing life. The current knowledge of living with an ICD primarily
reflects the experiences of male patients. This is not surprising because males constitute, on
average, at least three quarters of most research samples (e.g., Bainger & Fernsler 1995;
Craney et al. 1997; Davis et al. 1996; Dougherty 1995; Dunbar, Warner & Purcell 1993;
Finch et al. 1993; Gallagher et al. 1996; Reid, McKinley & Nagy 1997; Villacast n et al.
1996). Most of what is known about women's experiences of the ICD refers to female
patients over 60 years of age. Compared to male patients, they usually have less social
support, endure a slower rate of recovery and suffer a higher mortality rate (Dunbar,
Porter, Jenkins, Hawthorne, Dudley & Davis 1996; Horton et al. 1995; Molchany &
Peterson 1994; Villacast’n et al. 1996). Principal concerns of female patients under 50 years
of age relate to body image and sexuality, finances, employment and everyday activities
(Dubin et al. 1995; Vitale & Funk 1995). In contrast, some younger women with an ICD
have given birth without being shocked and without problems for the baby or themselves
(Dubin et al. 1995; Vitale & Funk 1995).
The present study included three female patients aged 47 to 54 years who each received an
abdominal ICD. Similar to other females with this device (Dubin et al. 1995; Molchany &
Peterson 1994; Vitale & Funk 1995), they attributed their localised discomfort and back
ache to its large size. They also noted its visibility as a protruding bulge. These women also
208
described previously unreported accounts of the difficulties of comprehending a body
altered both by the ICD and the menopause (Chapter 5.3.4.3). Two women endured
months of persistent, vague and troubling symptoms that sometimes resembled cardiac
symptoms. Cardiologists dismissed the symptoms as insignificant and local doctors took
some months to diagnose a menopausal origin. Hormone replacement therapy soon
relieved one patient's symptoms, but the other patient, who was refused this therapy,
suffered two years of continued severe symptoms. The third patient had been menopausal
prior to her cardiac arrest. These female patients recalled their bodies becoming the object
of negative scrutiny. One woman negatively felt programmed by the box (ICD) and noted
that the device bulge and associated scarring resulted in her view of her body as ugly and
devoid of sexual appeal. Another woman's adult son expressed disgust about his mother's
body being implanted with the ICD. A third woman discussed how male friends were
curious about the impact of the ICD on her sexual activities. These descriptions support
the need (Molchany & Peterson 1994) for more information about the experiences of female
patients. This study also identifies the need for a better understanding of how menopause
shapes the experience of living with an ICD for middle-aged female patients. Explorations
of this concern might also consider how social interactions, including medical
consultations, frame how female patients with an ICD perceive their body, self and
everyday experiences.
In summary, this discussion supports and extends previous information about the early
recovery experiences of patients who receive an ICD. Aspects such as resuming everyday
activities, learning to trust the ICD, resuming driving and work, and being shocked also
typify the events in the early recovery of patients elsewhere (Burke 1996; Sneed & Finch
1992). The presented understanding of the issues and tensions experienced with respect to
the unfamiliar ICD, an altered body, uncertainty and the desire to restore a sense of
normality and independence, also resemble the phase of ICD acceptance described by
Burke (1996, pp. 356-362) as "Integrating Technology into Life". In this phase, patients in
Burke's study minimised the ICD's negative aspects by using support networks, resuming
everyday activities, restoring a sense of normality and keeping abreast of new information
about the ICD. Their efforts to integrate the ICD and regain a sense of normality were
readily supported by a team of health professionals (Burke 1996).
8.2.4
Appreciating and celebrating life
209
For the patients in this study, the theme of appreciating and celebrating life represented ways
in which they made sense of their present and anticipated future existence. Personal
understandings, philosophies, values and aspirations shaped the meanings accorded their
changed body, personal relationships, achievements and the impact of the ICD on
everyday life.
Appreciating and celebrating life meant making sense of the changed body — the body-atrisk-of-arrhythmias and the body-with-ICD — and its influence on personal ways of acting
and being. Initially, patients accepted medical explanations that their arrhythmias signified
a defective conduction system in the heart. Patients subsequently interpreted their
arrhythmias more as an aberrancy that intermittently, albeit seriously, interrupted an
otherwise busy life and signified the body's weakened resistance. Factors seen as reducing
the body's immunity or resistance included the side-effects of medications, work-related or
life-related stresses, the physical events of a heart attack or impaired kidney function,
emotional stress and inadequate rest. Patients is this attributed meaning in their efforts to
improve the body's resistance through adequate, appropriate exercise, vitamin
supplements and getting a less stressful job (Chapter 5.2.4). Such interpretations have not
previously been reported.
Appreciating life, in part, drew its meaning from maintaining personal relationships.
Efforts to avoid being seen as different included maintaining an appearance of being well
and in control, and rarely discussing the changed body or the ICD with friends and
colleagues. For one patient (Mrs G), keeping up appearances meant not taking sick leave
even when she was ill (Chapter 5.3.5). This stance possibly framed the denial that living
with an ICD was living with a chronic illness (Mrs E). Further understanding of how
patients conceptualise their lived experience is needed to clarify current professional views
of living with arrhythmias or the ICD as chronic illness experiences (Burke 1996; Burke,
Rodgers & Jenkins 1992; Dunnington et al. 1988; Motzer & Stewart 1996).
For most patients, appreciating and celebrating life involved a philosophical acceptance of
living on borrowed time. They evaluated their life priorities, celebrated personal
achievements and positively moved forward through meaningful but realistic goals. Such
goals included spending time with grandchildren, working the land, completing house
renovations or travelling overseas (Chapter 5.4.1.1). A similar acceptance and desire for a
personally meaningful and quality existence is commonly reported by patients recovering
from ICD implantation, myocardial infarction, life-threatening arrhythmias, or cardiac
210
surgery (Burke 1996; Fleury, Kimrell & Kruszewski 1995; Fricchione, Vlay & Vlay 1994;
Kalbfleisch et al. 1989; Johnson & Morse 1990; Kolar & Dracup 1990; Sauv? 1995).
Although not discussed in the literature, patients in this study revealed how living with an
ICD is a uniquely ambivalent situation of living on borrowed time and with an implanted
technology designed to defy death. Most patients resolved this ambivalence by an implicit
reconceptualised understanding of death that also accorded a meaningful place for the
ICD (Chapter 5.4.1.1, 5.6). Despite initial doubts about being artificially kept alive, as with
other patients (Pycha et al. 1990; Sneed & Finch 1992) the (usually) brief discomfort of the
ICD's shock was seen as an acceptable price to pay for surviving an arrhythmic event.
Over time, this protective security underpinned the restored sense of normality and
creation of future possibilities. In this regard, the ICD was appreciated as that which
prevented an untimely demise, that is, a premature death.
On the other hand, patients openly acknowledged that regardless of its technological
power, the ICD would not prevent, and had no role to play in their ultimate or destined
death. There was also an implicit faith that doctors would ensure the ICD would not
interfere at the time of the patient's dying. Two patients (Mr B; Mrs G) who had not
resolved their awe, dread and fear of the ICD held little hope for a meaningful future,
despite resuming productive everyday activities. One patient (Mr B), who lived in dread of
recurrent ICD shocks, believed his only hope for relief resided in the unlikely event that
doctors would remove the device. Another patient (Mrs G) saw the ICD as preventing a
desired, dignified and peaceful escape from a debilitating lung disease. Worse, she
believed her death would only occur after the ICD exhausted its energy reserves through
repeated hideous shocks. Such prospects for both patients made the ICD's presence even
more intolerable (Chapter 5.5.2). As noted below, this ambivalence culminated in the ICD
being understood as an unwanted intruder.
The most detailed account of the acceptance of the ICD comes from Burke's (1996, pp. 356363) description of "Living Life Through Technology". As previously found (Keren, Aarons
& Veltri 1991; Pycha et al. 1990), Burke (1996) disclosed how patients yet to accept the ICD
were ambivalent about its negative, intrusive impact on the body and also unlikely to have
adequate support networks. Patients able to resolve this ambivalence cognitively focused
on the ICD's benefits — for survival, living and enjoying life — and minimised their
awareness of its negative effects. For most patients, acceptance of the ICD occurred within
six months (Burke 1996). Patients in benefitted from the newly introduced transvenous
211
approach to lead insertion (Burke 1996). Patients in previously reported studies required
major thoracic surgery at the time of ICD implantation. Their slower recovery and delayed
return to a reasonable quality of life (May et al. 1995; Pycha et al 1990; Sneed & Finch 1992)
possibly explain why it took up approximately 12 months before reporting a similar
acceptance of the ICD. No patient in the present study described a deliberate cognitive act
of reconciliation with their device. Rather, they described a more elusive transition in the
perceptual integration and acceptance of the ICD. This variance might be explained by the
different research techniques. The current retrospective study relied on recalled
experiences, whereas Burke's (1996) use of sequential interviews elicited rich insights into
the progressive thoughts and changes in the patient's recovery.
There are extensive reports about the ICD's effectiveness in preventing a premature
arrhythmic death. However, there is little professional discussion about its place or role
with respect to the issues of dying and death. Neither the literature nor patients in this
study describe situations in which clinicians frankly discuss end of life issues and the ICD.
There is a need to understand better how patients conceptualise dying and death in the
context of living with an ICD, and their related concerns, expectations or misconceptions.
The literature also offers little advice as to whether elective cessation of the ICD represents
an act of euthanasia. Further information about these topics is needed to ensure patients
make informed, realistic decisions about end of life issues.
In summary, appreciating and celebrating life involved acceptance of the ICD and making
sense of living on borrowed time and the changed body-with-ICD in terms of present and
future existence.
8.2.5
Accommodating the technology
The theme of accommodating the technology disclosed two possibilities in the patient's lived
experience of the ICD (Chapter 5.5). In the first possibility, described by most patients, the
ICD was gradually accepted as a welcome, trusted and protective friend. Typically, the
ICD was referred to as an insurance policy, an internal ambulance, an amazing example of
engineering and a friend. Similarly, in one study of 42 patients (Pycha et al. 1990, p. 442)
approximately 75% of patients described a positive perception of the ICD as a "life
extender" and "source of security", with 5% describing it as a "best friend". In the present
212
study, patients who perceived the ICD as a protective friend valued its help in their
recovery, with one patient (Mrs D) metaphorically describing the steps of her recovery as
walking another mile.
The second, more troubling possibility reflected a view of the ICD as that which
perceptually occupied and controlled the body and limited future possibilities. Recovery
involved a struggle, a sense of going around corners, ever wary of hidden obstacles (Mrs G)
(Chapter 5.4.1.3). Regardless of being able to resume everyday activities, patients in this
situation resented the ICD as an intrusive and alienating object that was in but not part of
the body. Powerlessness compounded this experience since doctors were expected to
refuse a request to cease the box (Mrs G) or prick of a thing (Mr B).
Discussions about patients' negative perceptions of the ICD in the literature most
commonly arise from the reports of psychiatrists. In their view, negative perceptions of the
ICD represent diagnostically significant problems of maladjustment, learned helplessness,
or a conditioned response to negative stimuli (e.g., Beames et al. 1996; Dougherty 1995;
Pycha et al. 1986; Pycha et al. 1990; Morris et al. 1991). Such discussions typically note that
discomforts incurred by the large abdominal generator keep patients acutely aware of the
ICD's presence and their dependency on the technology for survival (Pycha et al. 1986).
Patients who develop a hypervigilance, or "somatic preoccupation" with various bodily
sensations, reportedly experience difficulty in accepting the ICD's presence (Fricchione,
Vlay & Vlay 1994, p. 1057; Pycha et al. 1986; Morris et al. 1991). These reports recommend
psychological counselling and related medication as treatments to ease negative views
about the ICD. These literature accounts support Burke's (1996) conclusion that ICD
acceptance requires the patient to deliberately focus attention on the ICD's security and
quality of life benefits. There is no literature discussion about a dislike or resentment of the
ICD that relates to negative views about its power (as in one or more shocks) or potential
(to prevent death). Except for one case study (Fabiszewski & Volosin 1992), the option of
elective cessation of the ICD and its legal, ethical and clinical implications, has yet to be
examined by health professionals.
8.3
Question 2: The nature and meaning of being a partner
8.3.1
Overview
213
Partners do not share the patient's immediate experience of the ICD as an implanted
device. Nevertheless, as detailed in the phenomenological description of Being a Partner
(Chapter 6), the phenomenon of living with an ICD also affects their lives in complex ways.
Partners in this study described challenging, exhausting and isolating situations laden
with embodied vulnerability and an awesome responsibility for the patient, and for others.
The partner's lived experience was understood in and through the thematic dimensions of
being disrupted, reconstructing life, appreciating and celebrating life and accommodating the
technology. Although sharing similar thematic dimensions to the patient's collective lived
experience, living with an ICD conveyed different meanings for partners.
In brief, for the partner, being disrupted reflected the anxiety, vulnerability and exhausting
upheaval following the patient's survival of a sudden cardiac death event (Chapter 6.2).
The associated distress was exacerbated if the partner was directly involved in the patient's
rescue. Hospital visits, family workloads, the paucity of professional support and a sense
of isolation intensified the felt disruption. The anxiety of the pre-implantation wait was
exacerbated in instances where the patient waited at home. In this context, the partner felt
responsible for ensuring the patient's survival. The partner's limited knowledge meant
they felt inadequately prepared to recognise or manage potentially significant symptoms
and support the patient's pre-implantation preparations.
The theme of reconstructing life referred to the partner's experiences following the patient's
implantation surgery and return home (Chapter 6.3). In most situations, the first few
weeks were particularly stressful. Few partners received professional advice about the
patient's anticipated recovery, possible symptoms, or recovery activities. Fears about
further arrhythmias and the time taken to trust the ICD contributed to the partner closely
observing the patient for possible adverse signs. The felt sense of responsibility for
protecting the patient's survival and well-being was likened to that of being a parent or
guardian (Chapter 6.3.2). Elsewhere, one partner similarly equated her role to that of "...
taking care of a newborn baby" and another noted the patient's resentment of her
"babysitting"
protectiveness
(Simons,
Cunningham
&
Catanzaro
1992,
p.
19).
Overprotectiveness by the partner was not mentioned in the present study, but is not
uncommon among other partners in this context (Doolittle & Sauv? 1995; Pycha et al. 1986;
Sneed & Finch 1992).
As also reported elsewhere (Simons, Cunningham & Catanzaro 1992), partners balanced
their protective efforts with supportive encouragement for the patient's early resumption
214
of activities. In turn, the patient's ability to undertake various tasks facilitated the partner's
trust in the ICD. Some partners understood the patient's need to take the occasional risk,
but those who witnessed the patient's collapse resented any risk-taking because it
exacerbated their own felt vulnerability. Doolittle and Sauv? (1995, p. 393) reported that
partners who witness the patient's collapse describe it as a reference point that is "—
always in the background" framing subsequent decisions, actions and perceptions of the
patient's health status.
Partners had no contact with other patients or partners, nor was there ready access to a
health professional. This lack of access to information, reassurance and support possibly
contributed to the previously unreported changed meaning of home for partners. For the
patient, home was a safe, welcoming place that helped to restore their sense of self, being
and identity. In contrast, for the partner, their home lost its sense of comfort and security.
As the place where the partner's responsibility for the patient's survival came to the fore
their home became a place of vulnerability, insecurity and isolation. Two partners also
experienced home as an inescapable daily reminder of the site of the patient's earlier
cardiac arrest (Chapter 6.3.1). Partners had not had any previous contact with someone
who might understand the transformed understanding and vulnerability of home.
The desire to restore a sense of normality featured strongly in the partner's experience of
reconstructing life. Most partners took on the role of being the primary driver, but none
complained, possibly because patients resumed driving as soon as they again felt well and
safe. Partners seemed to acknowledge the importance of being able to drive for the
patient's recovery, independence, re-employment and social activities. Elsewhere, partners
report being frustrated when the additional driving role lasts for six months or more, yet
also concerned if patients defy medical advice by resuming driving (Doolittle & Sauv?
1995; Simons, Cunningham & Catanzaro 1992).
Reconstructing life meant trying to maintain usual levels of sexual intimacy. Three couples
reported that fears about provoking arrhythmias and possible shocks negatively affected
their sexual relationship. Elsewhere, 26% to 50% of couples report similar fears and a
reduction of sexual activity, with approximately 53% of partners worried about coexperiencing the patient's shock (Badger & Morris 1989; Brodsky et al. 1988; Cooper et al.
1986; Dougherty 1994; Kuiper & Nyamathi 1991; LŸderitz et al. 1994; Pycha et al. 1990).
Although many couples may experience reduced sexual activity, female partners have
reported increased feelings of intimacy and closeness, especially in the first six months
215
(Simons, Cunningham and Catanzaro 1992). Information about sexual counselling in the
context of living with an ICD remains sparse. One patient information booklet (Guidant
Corporation 1997) offers the brief advice that sexual activity increases the heart rate no
more than usual exercise. This reassurance seems to be diminished by the devotion of
three times as much space in discussing the possibility of being shocked during sexual
activity.
The theme of appreciating and celebrating life (Chapter 6.4) represented the partner's
resumption of various career, social and recreational activities. The distractions of an
increasingly busy lifestyle and restored sense of normality diminished the partner's
awareness of the patient's vulnerability. Even so, being able to forget something as
significant as an ICD took partners by surprise. It prompted a reflective acknowledgment
of the patient's achievements and reinforced plans to organise their affairs and engage in
mutually meaningful projects.
Ocampo (2000) suggests partners find it difficult to accept the ICD. In contrast, it was
readily accepted, trusted and valued by all partners in this study who confidently valued it
as a life-saver for the patient. It eased the partner's onerous responsibility for the patient's
survival and provided the authority for the patient and themselves to resume various
activities (Chapter 6.5). As previously reported (Doolittle & Sauv? 1995; Dougherty 1994,
1995), partners involved in rescuing the patient after a cardiac arrest especially valued the
ICD's protection. This protection alleviated some of their felt vulnerability and fears about
a recurrence. For most partners this appreciation also involved understanding the patient's
receipt of an ICD shock (Chapter 6.5.1). Witnessing the patient being shocked initially
aroused anxiety about another arrhythmic event. As previously reported (Simons,
Cunningham & Catanzaro 1992), the patient's prompt recovery provided partners with
reassuring evidence of the ICD's effectiveness, In contrast, one partner (Mrs B) witnessed
her husband's receipt of multiple shocks. This partner recalled her sense of helplessness at
being unable to ease his distress or prevent what they each thought was his imminent
death. Literature reports of partner distress at seeing the patient being shocked are
common (Dougherty 1995; Dunbar, Warner & Purcell 1993; Morris et al. 1991; Pycha et al.
1990), but few note the patient's conscious state or the number of shocks. Such factors will
affect the partner's reaction to the patient's shock(s).
Partners in this study acknowledged the ICD was a technological device that like other
machinery might one day fail to work (Chapter 6.5.2). Such failure was seen as a remote
216
possibility and accorded minimal attention. In contrast, more immediate feelings of
insecurity, vulnerability and potential loss occurred if the patient expressed their desire for
the ICD's deactivation or removal (Chapter 6.5.3). Neither source of partner vulnerability
has previously been discussed at length in the literature.
The literature offers little information about impact of living with an ICD for young
children whose parent has an ICD. Two female partners in this study described the
additional responsibility of providing their young children with simple explanations about
the patient's collapse, the ICD, and the patient's receipt of ICD shocks. They expressed a
sense of guilt that attention to the patient's needs often left little time or energy for their
children's needs. Teachers were thus kept informed in the hope they might provide
additional and discreet support. These children seldom discussed their feelings either at
home or with peers, friends or teachers who were unlikely to understand. Parents
observed considerable maturity, insight and resilience in their children but also the
immediate ways in which a perceived threat to the patient's health exposed the children's
fears, concerns and vulnerability (Chapter 6.3.4).
The only literature reference to the experience of young children of a parent who has an
ICD comes from a study of psychiatric morbidity with 20 couples (Morris et al. 1991).
Three couples with a young child observed that the child experienced panic attacks,
anxiety incidents, or asthmatic attacks soon after the parent's receipt of an ICD. The
increasingly younger population with ICDs (Dubin et al. 1995) further supports the need
for more information about the experiences of young children whose parents have an ICD
(Morris et al. 1991) and about the most effective forms of family-oriented support
interventions (Dougherty 1997; Ocampo 2000).
Partners in this study had no prior knowledge of the ICD, nor any contact with other
patients or partners. Faced with the challenging task of learning about arrhythmias,
medications and ICDs, their gradually acquired trust in ICD facilitated a restored sense of
normality, eased their perceived family responsibilities and made it possible to envisage a
meaningful future. Each partner recommended improved access to information, contact
with other partners, ongoing education, and access to counselling and support. These
experiences are very similar those described by many other partners (e.g., Doolittle &
Sauv? 1995; Dougherty 1994, 1995; Dunbar, Warner & Purcell 1993; Kuiper & Nyamathi
1991; Pycha et al. 1990; Simons, Cunningham & Catanzaro 1992; Sneed & Finch 1992).
217
Partners in this present study also experienced concerns arising from the patient's desire to
discuss end-of-life decisions, death or the elective discontinuation of the ICD.
8.4
Question 3: Understanding the ICD-as-experienced
As presented in the Chapter Seven, the final layer of analysis addressed the third research
question by describing how the ICD was perceived, bodily experienced, understood and
integrated for the patients in this study. This hermeneutic analysis refocussed the inquiry
from everyday lived experience toward the patient's embodiment and comprehension of
the ICD. In brief, this interpretation suggested the inanimate mechanical device of the ICD
is not a neutral technology inside the physical body. Rather, in and through its presence,
power and potential, it generates and is also accorded various meanings.
The first layer of meaning reflects the immediate perception of the ICD-as-experienced,
that is, the immediate awareness of its physicality and functionality in and for the body
and self. Pre-implantation there is an anticipated hope the ICD will reduce the risk of a
sudden cardiac death(Chapter 7.2.1). Implantation generates a sense of awe, with the
device perceived as a strange object that incurs a varying degree of discomfort and
spatially disturbs the physical body (Chapter 7.2.2).
Time and subsequent events give rise to contrasting existential and embodied perceptual
possibilities. In the first possibility (Chapter 7.2.3), perception there is a progressive
perception of accepting the ICD as an instrumental body extension, appreciating it as a
facilitator of possibilities, and then embodying it as a trusted friend. In the alternative
possibility (Chapter 7.2.4), the ICD is perceived as that which spatially occupies and
controls the body and thwarts existential options. It distresses the lived self, and brings a
sense of alienation and powerlessness. This possibility culminates in an existential rejection
of the ICD as an unwelcome intruder in the body and life. As reflected in the question
mark in the Chapter Seven heading of "The ICD as Experienced: Friend or Intruder?",
perception of the ICD is apt to change as a consequence of specific device-related events.
In addition, the patient's being-in-the-world — an engaged existence amidst various
meanings associated with technology and related nursing, medical and media discourses
— also influences the meaning accorded the ICD
218
(Chapter 7.3). The ICD becomes
understood either as a lifesaving (utopian) technology affirming its embodiment as a
friend, or as an alienating (dystopian) technology reinforcing its existential rejection as an
intruder.
This interpretation evolved because patients were able to articulate either their
embodiment and comprehension of the ICD. With the intent of promoting a further sense
of wonder about the ICD-as-experienced, this discussion briefly digresses to consider
whether Twiddler's Syndrome — contrary to medical conceptualisations — might be
considered as a non-verbal expression of the embodied significance of the ICD. Twiddler's
Syndrome was first identified as a complication of permanent pacemaker implantations in
adults (Bayliss, Beanlands & Baird 1968; Goldman, Noble & MacGregor 1972). Doctors
have since recognised its occurrence in adults with an ICD (Avitall et al. 1994; Boyle et al.
1998; De Buitleir & Canver 1996; Lal & Avery 1990; Navone, Picone & Boahene 1996;
Ruder et al. 1990) and in children with a pacemaker or a long term central venous catheter
(Abrams & Peart 1995; Servetar 1992).
The related medical reports typically explain Twiddler's Syndrome as the patient's noncompliance in the care of their device. Despite patient denial, these explanations suggest
the device is repetitively touched and manipulated (twiddles) through the adjacent skin
surface. The result with respect to the ICD involves the rotation of the generator within its
surgical pocket. The subsequent tension dislodges or breaks the attached sensing and/or
defibrillating leads and renders the device ineffective. In the absence of inappropriate
shocks or a sudden arrhythmic collapse, this fault may go undetected until routine device
checks at the ICD clinic. Treatment involves reimplantation of the generator and
replacement of the damaged leads. Some patients have suffered a recurrence of device
rotation or lead breakage. Despite numerous medical case reports, qualitative descriptions
patient's perspective in the context of Twiddler's Syndrome could not be located. Nurses
are ideally situated to explore the patient's lived experience and antecedents of this
Syndrome. Such explorations might also critique the implied the blame implied in medical
views about patient non-compliance. Such explorations might also consider the speculative
notion that Twiddler's Syndrome might be the manifestation of a subconscious existential
rejection of an implanted technology. The personal risk and cost of Twiddler's Syndrome
to the patient and the health care system increases the imperative to better understand
patients' experiences, identify those who at-risk and provide appropriate support
strategies.
219
There have been extensive analyses of the impact of technologies within nursing and
health care (Chapter 7.3.2, 7.3.3). However, few researchers have explored the interface
between human existence and implanted biomedical technologies that replace or support
body organs. The interpretation presented in Chapter Seven suggests the ICD is an
implanted technology that incurs ambiguous embodied meanings for the patient's self,
body, existence and death. The interpretation also suggests various clinical practices and
discourses influence the patient's corporeal understanding of the ICD. This interpretive
unmasking of the ontological significance of the ICD-as-experienced discloses that patients
do not simply have an ICD implanted in their body. Rather, its presence, power and
potential shapes their sense of integrity, identity, being and everyday reality: they are their
body-with-ICD. In addition to extending clinical understanding, further consideration of
this interpretation may extend scholarly debates on the significance of implanted
biomedical technology for human existence.
8.5
Summative comments
Although seldom previously used to explore patients' experiences of cardiac arrhythmias
or the ICD, hermeneutic phenomenology provided a valuable method for understanding
the phenomenon of living with an ICD as experienced by a group of Victorian patients and
partners. It culminated in three phenomenological descriptions offering understanding of
the patient's lived experience, the partner's lived experience, and the embodiment of the
ICD-as-experienced. These collective descriptions offer clinicians and interested others
insights into the ambiguities, possibilities and meanings of living with an ICD for the
research participants and, potentially, for others with similar devices who experience
similar social and clinical contexts.
This chapter discussed the significance of this emergent understanding of living with an
ICD with reference to the related literature. In brief, this understanding generally
supported or extended existing knowledge of patient and partner experiences. It also
offered several previously undisclosed insights of how the ICD, as an implanted
biomedical device, is perceived, integrated, embodied and accorded meaning.
This study arose in a context and time where little was known about the clinical practices
of the Australian ICD program and related patient and partner experiences (Cowley,
220
Conway, & Haley 1990). Subsequent evidence (e.g., May et al. 1995; Gallagher et al. 1996;
McKinley et al. 1997; Reid, McKinley & Nagy 1999) suggests other Australian patients and
partners encounter similar health care contexts and experiences to those reported by the
participants of this study. However, despite a decade of recommendations in the literature,
no evidence was found of the implementation within Australian of any programs to
educate staff, or to educate and support patients and partners.
Beyond a comprehension of the phenomenon of living with an ICD, this study provides
theoretically and practically relevant insights for nurses, doctors and other professionals
working in Australian health care settings. Chapter Nine describes this significance,
proposes specific clinical recommendations and offers a model for their implementation. It
identifies several issues for consideration by researchers interested in further exploring the
phenomenon of living with an ICD. Nonetheless, the relevance and applicability of the
understanding and recommendations in this thesis require close consideration of interim
clinical practice changes and anticipated technological developments in the ICD.
It was beyond the scope of this study to consider the ethical and moral concerns about the
use of the ICD. Nevertheless, its insights brought into question the existential cost of the
ICD for some patients. This issue affirms the recognised need (Bennett & Pressler 1995;
Fabiszewski & Volosin 1992) to reconcile complex quality of life issues with the
beneficence afforded by life-saving cardiac technologies. Such reconciliation may consider
the previously undiscussed issues of who controls the technology, who has access to the
technology, and the ability of patients to make fully informed decisions about the ICD.
Through their clinical practice nurses have the opportunity to identify aspects of health
care technologies that negatively impact on patients' lives (Pelletier et al. 1996;
Sandelowski 1997). Communication of such aspects to biomedical engineers and
technicians may contribute to improvements in the design of future implantable
technologies. Such contributions require nurses to be more proactive because, at least
within Australia, their views about specific health care technologies have rarely been
invited or encouraged (Barnard 1997).
Finally, this chapter engaged the hermeneutic goal of using varied instances to examine
and understand a given phenomenon. It is hoped the illuminated complexities,
contingencies, possibilities and meanings of living with an ICD can, following Walton and
Madjar (1999, p. 8), "... help teach us what we did not know, help us see patterns in the
human predicament, and help us develop our practice wisdom".
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CHAPTER NINE
IMPLICATIONS: KNOWLEDGE, PRACTICE, RESEARCH
9.1
Introduction
This chapter specifically examines the theoretical and practical significance of this study
for nurses and other health care clinicians. It proposes a model for implementing several
practice based recommendations. Finally, it identifies several issues for future researchers
for further understanding of living with an ICD.
9.2
The findings: Theoretical and practical contributions
9.2.1
Theoretical contributions
As summarised in Figure 9.1, the preceding exploration offers several insights from one
group of Victorian patients and partners that have the potential to help nurses, doctors and
others better understand the experience of living with an ICD. First, the study provides
needed information (Cowley, Conway, & Haley 1990) about the clinical and experiential
aspects of the Australian ICD program.
Second, the study describes the significance for these Victorian patients and their partners
of the EPS, the pre-implantation waiting period and the patient's post-implantation
recovery experiences. Further, the insights help to redress the need (Burke 1996; Simons,
Cunningham & Catanzaro 1992; Sneed & Finch 1992) for information about the transitions
occurring over time in the perception and acceptance of the ICD. Previously unreported
insights include the patient's denial of living with a chronic illness; the lived experience of
some middle aged, menopausal female patients; and, the importance of being productive
to help repay the perceived social debt of receiving expert care and the ICD.
This research supports previous evidence of the complexity of the partner's experience
(Dougherty 1994, 1995; Pycha et al. 1990; Simons, Cunningham & Catanzaro 1992). It also
222
provides needed information (Dougherty 1994) about the partner's longer term
experiences. Previously undisclosed insights include the transformed meaning of home
and, as with the patient, the reluctance to seek social support to ease the sense of isolation.
It was suggested this reluctance reflected the lack of public awareness of the ICD. At a time
when they most needed support patients and partners lacked the emotional and physical
resources to teach and reassure their friends and colleagues. Another new insight related
to the partner's renewed vulnerability when the patient wanted the ICD removed or
deactivated. Finally, partners offered insights about the experience of children when a
parent has an ICD. Their children endured an emotionally challenging time, with few
opportunities to share their feelings or concerns with friends or others. These insights
begin the recognised need to (Dougherty 199; Morris et al. 1991) to learn more about the
experiences and the psychological significance of children in this context.
Third, the study offers new insights into the embodiment of the ICD. These insights
suggest the ICD is either perceived, bodily experienced and embodied as a welcome
friend, or existentially rejected as an intruder. This beginning understanding of ICD
embodiment may benefit philosophical explorations of the impact of implanted technology
on human existence.
223
Figure 9.1: Insights that extend current knowledge of living with an ICD for Victorians
Aspects of patients' experiences
Experiencing the EPS:
• dissatisfaction at being fully conscious during the EPS
• staff's insensitivity (to patient distress and in describing EPS results)
Waiting for the ICD's implantation:
• regardless of duration or place, waiting is a vulnerable time
• one week is too short to learn about the ICD and its future implications
Living with an ICD:
• dissatisfaction with the preparation for living with an ICD
• learning to adapt to the ICD involved trial and error processes
• inability to meet other patients and thus share and validate experiences
• few alternative information resources
• despite isolation, reluctance to seek social support is self-protection
• a single shock did not incur the adverse effects reported elsewhere
• multiple shocks while conscious incurs debilitating distress
• patients deny that living with an ICD is a chronic illness
• being productive helps repay perceived social debt for treatment
• middle-aged women experience the ICD differently to other patients
- offer more vivid and detailed descriptions of the EPS and ICD
- recovery experience compounded by menopausal symptoms
- concerns about the ICD's impact on body appearance and shape
- male friends or relatives make negative inferences about the ICD's power
Being a patient
• lived experience of the ICD as a trusted friend, or as a threatening intruder
Aspects partners' experiences
• limited information about living with an ICD and recovery experience
• variable time before the partner trusts the ICD
• home loses its sense of security; instead, exacerbates partner's vulnerability
• unmet desire to meet other partners for social support
• reluctance to seek social support from people unfamiliar with the ICD
• patient's rejection of their ICD threatens partner's security
• young children need emotional support
Being a partner
• lived experience of embodied vulnerability and exhausting responsibility
The experience of children whose parent had an ICD
• young children need emotional support
• seldom discuss their concerns or fears with parents
• reluctant to talk with peers or teachers who know little about the ICD
• vulnerability exposed by perceived threats to the patient
• develop maturity, insight and resilience beyond their age
- take on additional family chores
- learn not to worry excessively
Note:
These insights denote only the experiences of the 7 patients & 6 partners in this study.
224
9.2.2
Implications for clinical practice
Figure 9.2 summarises specific suggestions offered by participants for improving the
provision of relevant care, education and support.
Figure 9.2:
Desired improvements to clinical practice
Reducing the distress of the EPS
• possibility of being sedated during the procedure
• need for more sensitivity to patient's fears, anxiety, concerns
• avoid the term 'Failing the EPS' when discussing the results
Increasing advice to patients and partners about living with an ICD
• pre-operative advice about ICD: size, location, functions
• pre-discharge guides for recovery
- anticipated recovery experiences and duration
- advice about everyday situations: diet, exercise, return to sexual activity,
driving, work, travel, identification bracelet
- recognition and management of symptoms
- what to expect regarding the ICD and its shock(s)
- strategies for coping with specific ICD-related events
Providing access to individualised counselling
• to ensure informed decisions about ICD implantation
• enhance coping strategies
• frank, informed discussions about:
- future replacement of ICD
- anticipated role of the ICD in the patient's dying and death
- possibility of elective ICD removal or deactivation
Providing access to supportive resources
• access to a designated professional resource person
• follow-up support by telephone, or with support meetings
• facilitated contact with other patients or partners
Ensuring better professional awareness of the ICD and related experiences for
• nursing staff: general wards, community settings and in rural hospitals
• doctors in regional and rural emergency departments
• ambulance personnel
• local doctors
Informing family, friends and work colleagues
• what to do in the case of an ICD shock or emergency
• who to call for help
• where the ICD identification card is kept
225
These suggestions, together with insights drawn from the participants' specific lived
experiences, reveal three directions for improving clinical practice. First, clinicians need to
be more sensitive to the distress experienced by patients during the EPS. Second, as also
noted elsewhere (Sneed & Finch 1992), clinicians require a comprehensive education
program to skilfully manage ICD-related technical problems provide patients and partners
with appropriate care, advice and support.
Third, patients and partners require a comprehensive education program that continues
during the recovery period. This need is well recognised for patients experiencing various
cardiac problems, including ICD implantation (Ashton 1997; Davis et al. 1995; Dracup,
Moser & Marsden 1993; Dougherty 1997; Ocampo 2000). The amount and complexity of
the information required underpin the need for this program. In addition, the time
available for clinicians to offer education to patients and partners has significantly reduced
as a result of technological and practice changes in the past decade. For example, the
duration of the pre-ICD waiting time has reduced from several months in the early 1990s
and a week by the mid-1990s, to approximately two to three days more recently (Burke
1996; Luceri et al. 1995; Munger et al. 1995; Reid, McKinley & Nagy 1999). The patient's
average length of hospital stay for ICD implantation has also reduced, from eight days in
the early 1990s and five days in the mid-1990s to two days in the late 1990s (Burke 1996;
Cowley, Conway & Haley 1990; Luceri et al. 1995; Reid, McKinley & Nagy 1999). These
changes increase the imperative for a coordinated, continuing education program. This
program also needs to address the patient's and partner's needs for social support. As
discussed earlier (Chapter 8.2.3), social support has been shown to positively enhance the
patient's emotional and physical recovery after a cardiac event, including the receipt of an
ICD (e.g., Brezinka & Kittel 1995; Burke 1996; Dunbar, Porter, Jenkins, Hawthorne, Dudley
& Davis 1996; Hildingh, Fridlund, Segesten 1995; McCauley 1995; Moser 1994; Rankin
1992). This literature offers several strategies for promoting this social support. Briefly,
these strategies include:
• evaluating the adequacy and type of social support resources available to the patient and
the partner;
• recognising instances of severe psychological distress early in the patient's recovery, so
that appropriate support can be given;
• facilitating ongoing contact for and between patients (support groups; telephone support
links; cardiac rehabilitation program; culturally sensitive informal networks);
• providing partners with appropriate support (adequate information, realistic advice
about the patient's anticipated symptoms, reactions and progress); and,
226
• encouraging the patient's social interaction with friends, colleagues and communal
activities.
9.3
Recommendations for improving clinical practice
The following recommendations merge the understanding derived from this study with
the participants' suggestions and the related literature advice. These recommendations
include:
• Appointing an ICD case manager
• Providing an ICD-related staff education program
• Providing a patient education and support program
- An ICD information checklist
- An information resource manual
- An ICD support group
- A telephone support link
- ICD-Cardiac rehabilitation program
• Providing a community education program
These recommendations address the three aims of improving the knowledge of clinical
staff across various settings, providing patients and families with appropriate education
and support, and increasing community awareness of the ICD. The following explanation
of each recommendation and its proposed implementation and evaluation makes two
assumptions. First, it accepted that cardiac nurses have a major role in monitoring and
caring for patients who present with arrhythmic events, need related diagnostic
investigations and require implantation of an ICD. They are thus ideally positioned to
learn more about living with an ICD and provide patients and their families with
appropriate education, advice and support (Badger & Morris 1989; Brannon & Johnson
1992; Molchany & Peterson 1994; Teplitz, Egenes & Brask 1990; Veseth-Rogers 1990).
Second, the proposed implementation of these recommendations assumes organisational
approval and the provision of adequate personnel, administrative and budgetary
resources.
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9.3.1
The Appointment of an ICD Case Manager
The first recommendation is for the appointment of an ICD case manager. Although not
previously reported, this recommendation supports the suggestion by Aarons and Veltri
(1993, p. 174) for a specialist cardiac nurse to "... oversee the care of ICD patients [and]
ensure the availability of various resources to the staff, patient and family". It also reflects
ideas in Dougherty's (2000) account of her role as a case manager for patients with acute
cardiovascular disease. This role included "... discharge planning, assessment, teaching
patients and families ..." and the coordination of various support activities (Dougherty
2000, p. 995).
The ICD case manager requires a comprehensive knowledge of ICDs and related patient
and partner experiences, as well as excellent communication, collaborative, interpersonal
and organisational skills. The case manager would undertake a dual role. The first role
would involve coordinating the proposed staff, patient and community education
programs (discussed in detail below). The second role would satisfy a need recognised by
participants in this study, and elsewhere (Aarons & Veltri 1993; Dougherty 1997; Kuiper &
Nyamathi 1991) for ready access to an expert resource person who can answer questions
and provide follow-up advice. Patients obtain great comfort in having 24 hour telephone
access to clinical staff (Burke 1996). A nominated staff member who covers the case
manager's time off would ensures continued support, without the calls being diverted to
otherwise busy clinical staff.
9.3.2
Staff Education Program
The second recommendation is for a staff education program to teach medical and nursing
staff about ICDs and the related patient and partner experiences. Rapid expansions in the
use of ICDs increase the likelihood of clinicians caring for recipients in a range of acute,
community and rural health care settings. The view from this study and elsewhere
(Dougherty 1997) is that with the except of implanting cardiologists, few clinical staff are
sufficiently informed to be able to appropriately care for these patients.
The proposed staff education program would offer two levels of information. The program
would first address the complex learning needs of staff working in emergency, critical care
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units and paramedical contexts. Second, it would provide more basic information for
clinicians working in general or rehabilitation wards, the community and rural health
agencies.
Suggested program content includes information on cardiac physiology, rhythm
disturbances and related medical investigations. Explanation of the EPS would address the
need to any associated patient distress. Technical explanations of the ICD's functions and
potential complications would identify the potential interference of using high voltage,
magnetic or surgical equipment on or near the patient (Moser, Crawford & Thomas 1993).
Considerable attention would be given to the needs, concerns and issues related to living
with an ICD for patients and their families. Staff would be encouraged to use the ICD
checklist (described below) to guide their provision of comprehensive and consistent
explanations during the patient's pre-ICD, perioperative, recuperative and later recovery
periods.
Possible resources for this program include specialist clinicians, instructional literature, the
manufacturers' advice booklets and a self-learning manual containing relevant research
articles, videos, appropriate websites and a list of videos and CD-ROMS available for loan.
Suggested program formats include lecture presentations, practice scenarios addressing
specific complications, and the experiential insights of living with an ICD from invited
patients and partners.
9.3.3
Patient Education and Support Program
The third recommendation is for the case manager to oversee the development and
delivery of a program of education and support for patients and partners. This program of
information, advice and coping strategies would begin at the time of the patient's pre-ICD
EPS, and continue through the first year of their recovery after ICD implantation. The
intent is offer patients and families with a "... road map of the process of recovery that
includes expectations, challenges, timing of events and anticipations" (Dougherty 1997, p.
57). The program would thus address the recognised changes in learning and support
needs over time (Bremner, McCauley & Axtell 1993; Davis et al. 1995; Dougherty 1997;
Gallagher et al. 1996; Teplitz, Egenes & Brask 1990; Veseth-Rogers 1990). The following
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section describes the suggested components, namely an information checklist, a patient
resource manual, a support group, a telephone support link and a rehabilitation program.
9.3.3.1 The ICD Information Checklist
Ideally, the case manager would introduce the patient to the ICD information checklist
when initially explaining the education and support program. This checklist would
structure the information offered to the patient and be included in the bedside
documentation The two columns of the checklist would respectively list the topics to be
addressed and provide room for brief notations after each topic is explained.
Suggested checklist topics (Appendix E) would derive from the advice of expert clinicians
in the field and the many information guides in the literature (e.g., Brannon, & Johnson
1992; Dougherty 1997; Harper & VanRiper 1993; Thomas & Moser 1993; Veseth-Rogers
1990). Suggested topics to be explained include cardiac arrhythmias, a coronary
angiogram, EPS, the ICD, perioperative procedures, and pre-discharge and recovery
advice. The latter would include the issues of wound care, physical and sexual activities,
emotional reactions, diet, driving, other medical care and advice specifically relating to the
ICD. Patients with a pectoral device would require instruction on the safe use and
pocketing of a mobile phone (e.g., Bassen, Moore & Ruggers 1995; Fetter et al. 1998).
Preparatory information about ICD shock(s) may include role playing that offers strategies
for use at the time of a shock (Dougherty 1995; Dunbar, Warner & Purcell 1993). In
addition to the available support resources (discussed below) the checklist would identify
issues to be addressed later in the patient's recovery, including body image concerns,
sexuality, self-esteem, re-employment, holidays and travel (Dougherty 1997; Molchany &
Peterson 1994).
Ideally, the partner would be present when staff explain each of the checklist topics. Use of
visual displays, videos, white board diagrams, a replica model of an ICD and printed
information may facilitate the comprehension and retention of the information. The patient
would receive a copy of the checklist to keep for personal review after their discharge and
to also present as reminder for clinicians to continue the information sharing process
during follow-up appointments.
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The original checklist would be returned to the case manager, with notations made of any
in-hospital adverse events or troubling symptoms for the patient. The case manager would
thus be alerted to those patients who may require individualised home monitoring and
support. Individualised home visits from a clinical nurse specialist have not been reported
with this population, but have reportedly reduced anxiety and uncertainty and improved
the outcomes of patients suffering distressing heart failure symptoms (Hawthorne, M. H.
& Hixon 1994). Anticipated benefits for patients experiencing complex problems around
the time of ICD implantation include improved symptom management and patient
recovery, reduced risk of rehospitalisation and facilitated access to professional
counselling. Records of the date and time of each visit, the issues raised and the outcomes
of suggested strategies would be documented and attached to the original checklist for
regular review by the case manager.
9.3.3.2 Information Resource Manual
The patient would receive the information resource manual soon after confirmation of the
need for an ICD. Suggested contents of this manual include the ICD manufacturer's
booklet, relevant journal articles and a specific plan of action for symptom management
and ICD shocks (Harper & VanRiper 1993). Simple pictorial plans would overcome help
patients who have a literacy problem (Harper & VanRiper 1993). The manual would also
identify reputable related internet chat sites, such as the American Zapper Newsletter
(Duffey 1998) and list the instructional videos, CD-ROMS or computer-assisted learning
programs (e.g., Porterfield 1994) that may be borrowed. Contact telephone numbers for the
case manager, cardiologist and volunteer patients who have agreed to be support persons
will be listed. New recipients of an ICD often feel awkward about making the initial
contact a volunteer support patient (Simon, Cunningham & Catanazaro 1992) so the case
manager ought to arrange the first meeting. Finally, the manual given to rural patients and
those unable to attend a support group would include appropriate exercises and daily
activities. A small fee or sponsorship support from device manufacturers would cover
manual costs.
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9.3.3.3 ICD Support Group
The availability of regular ICD support group meetings would provide patients and
partners with additional information and social support resources. Noted benefits include
the reduced concerns, misconceptions and anxiety, improved optimism, activities and
ability to cope, and the validation of personal experiences (Aarons & Veltri 1993; Badger &
Knott 1993; Fricchione, Vlay & Vlay 1994; Molchany & Peterson 1994; Teplitz, Egenes &
Brask 1990). The most appropriate time to join a support group remains unclear, but the
suggestion her is approximately three weeks after the patient's discharge. Participants in
the current research noted how these early weeks are physically tiring, emotionally
stressful, socially isolating and when their knowledge deficiencies become apparent.
Each support group meeting would be coordinated by a cardiac nurse specialist, with
assistance from an implanting cardiologist and skilled counsellor. Each meeting would last
approximately two hours, with time allocated for an educational presentation, a question
and answer session and informal social interaction. The educational aspect would address
post- discharge topics in the checklist, review recent research and answer specific
questions. Given the reasons for ICD implantation, it is possible that support group
participants might be confronted with the death of a member. Contingency counselling
should thus be available (Badger & Knott 1993).
9.3.3.4 A Telephone Support Link
The case manager would coordinate a telephone support link for patients unable to access
the support group or rehabilitation resources. The intent is to provide reassurance, clarify
information needs and help resolve day to day concerns about the ICD in the patient's
early recovery. Although not previously reported for patients with an ICD, expert
telephone support has been used for patients recovering from myocardial infarction,
cardiac angioplasty, stroke or major orthopaedic problems (Brezinka & Kittel 1995;
Frasure-Smith 1991; Gulanick et al. 1988; Rawl et al. 1998). Reported benefits include early
identification of psychological distress, reduced anxiety, insecurity and isolation,
improved longer term outcomes and fewer calls to clinical staff.
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The date and time of the first telephone call would be arranged before the patient's
discharge. Specific guidelines would frame the frequency and duration of follow-up calls,
with the date, time and content of each call documented on a preprinted telephone record.
Suggested content headings for this record include patient well-being, current activities,
concerns and specific needs and partner concerns.
9.3.3.5 An ICD Cardiac Rehabilitation Program
The case manager would coordinate the ICD cardiac rehabilitation program. Previous
evidence of such a program is limited to an early report by Menard-Rothe and Callahan
(1986) of patients being monitored during a range of exercises conducted in a setting with
access to emergency facilities. Rather than a separate program, it would be financially
prudent to integrate this intervention into an existing cardiac rehabilitation program.
The ICD cardiac rehabilitation program would be conducted by cardiac physiotherapists
who are knowledgeable about the device and skilled in managing arrhythmic events. It
would provide supervised and monitored activities that meet the specific needs of male
and female patients (Brezinka & Kittel 1995; Moore 1995).
This program would especially benefit patients whose fears of recurrent arrhythmic events
or ICD shocks impede their recovery. Anticipated outcomes include increased confidence,
reduced fears, appropriate extension of daily activities, social support and camaraderie
(Brezinka & Kittel 1995; Fricchione, Vlay & Vlay 1994; Kamwendo, Hansson & Hjerpe
1998; Menard-Rothe & Callahan 1986). Monitored data about the patient's exerciseinduced heart rate and rhythm changes may also guide the cardiologist in determining the
ICD's most appropriate tachycardia alarm. Ideally, this alarm ensures the ICD detects an
arrhythmia without delivering inappropriate shocks for exercised-induced faster heart
rates.
9.3.4
Community Education Program
The community education program would increase public awareness of the ICD. First,
patients would receive leaflets containing simple explanations of arrhythmias, the ICD, its
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shock and related experiences. Distribution of this leaflet to family, friends and work
colleagues will disseminate information about the ICD, increase awareness of the patient's
experience and encourage others to offer appropriate forms of social and practical support.
Second, the case manager would increase public knowledge of the ICD through strategies
that include use the dissemination of related recent research findings to media outlets and
related public speaking engagements. The latter could include talks by volunteer patients
on the experience of living with an ICD. Such promotions may encourage financial support
for various interventions and social lobbying to help redress specific issues raised by
patients and partners. For example, patients in this research recommended that telephone
companies reduce the costs related to using a mobile telephone during the early postimplantation period.
9.3.5
Evaluation
The ICD case manager regularly monitor and evaluate the implementation of each
recommendation. For example, a survey assessment of the staff education program may
review the impact of improved clinician knowledge on the communication about the
patient's recovery and progress between clinicians in different health care settings.
Several suggestions are offered to evaluate the quality, relevance, cost effectiveness and
outcomes of the patient education and support program. First, a patient satisfaction survey
within a week of the EPS and coronary angiogram would evaluate the effectiveness of the
related preparatory information and efforts to reduce patient distress.
Second, a survey conducted a month after the patient's discharge home would evaluate the
timeliness and usefulness of the ICD checklist for addressing knowledge deficiencies,
perception of the device and early patient outcomes. Specific outcome aspects for this
review include wound infection, device discomfort, complications, resumption of activities
and distress or symptom presence (pain, arrhythmias, lethargy, anxiety, sleep disturbances
and lethargy). The survey could also assess concepts such as the patient's perceived sense
of control, sense of coherence (knowing what to do in a situation) and self-efficacy
(expecting to be able to do various activities) (Motzer & Stewart 1996; Schuster et al. 1998).
These concepts have not yet been studied among patients with an ICD. There is however a
234
positive association between these concepts and patient recovery and reduced
psychosocial distress for those recovering from a myocardial infarction, coronary bypass
surgery, a life-threatening cardiac event death or cardiac rehabilitation (Kamwendo,
Hansson & Hjerpe 1998; Moser & Dracup 1995; Motzer & Stewart 1996). The survey
findings would provide data to help clinicians identify the most appropriate type of
intervention and its timing, especially for patients experiencing symptom or device related
distress, or a reduction in their sense of control, coherence and self-efficacy. These data
would assist in evaluating the cost-effectiveness of this program.
Third, regular reviews of the filed ICD checklists, home visit reports and telephone
support charts would provide additional data for revising the program content and
processes. Cumulatively, these evaluations may help clinicians identify the most effective
family-centred recovery strategies.
Evaluation of the community education program may be more difficult. Increased public
awareness of the ICD will require continued reinforcement through regular media stories.
Anticipated positive outcomes include increased initial awareness of the ICDs among
prospective patients and the increased availability of informed social support.
9.4
Limitations of the research
As noted earlier (Chapter 1.3.3.5), this research was initially restricted by its retrospective
design and the inclusion of Victorian patients and partners who could read and speak
English. This excluded contact with patients from non-English speaking backgrounds.
Other limitations may affect the relevance of the insights of this study for patients with
different demographics, types of ICD or related experiences. First, this research did not
assess the patient's cognitive status and could not determine if, as with patients elsewhere
(Dougherty 1997), they suffered any memory deficits from their arrhythmic events. In
keeping with the phenomenological approach, participants' detailed and often graphic
descriptions were accepted as accurate representations of their experience of living with an
ICD. There was no apparent indication of any patient suffering a cognitive deficit, but it is
possible that patients suffering such a deficit declined any involvement in the study. The
inclusion of cognitive assessments in future studies will need to be considered with respect
to the research questions, modes of inquiry and the timing after ICD implantation.
235
Second, the findings specifically reflect experiences associated with the ICD in use in the
early to mid-1990s. Future devices are expected to include more pacing and defibrillation
options, multiple sensors to monitor the heart's ischaemic risk and haemodynamic levels
and, possibly, medication infusion pumps (KenKnight et al. 1996; Manolis 1994; Zehender
et al. 1994). Future studies of device perception, integration, experience and embodiment
will need to review the significance of such a complex and "... comprehensive, implantable
cardiac supervision and treatment unit" (Zehender et al. 1994, p. 1062). Researchers will
also need to consider the impact of any interim clinical practice changes, such as the
implementation of the above or similar interventions.
Third, the intent of phenomenological research is to understand the meaning of a given
human experience. As noted earlier (Chapter 3.2.3.1), this type of inquiry nonetheless
reflects the researcher's particular interest or engaged stance in the world. On one hand,
the preceding understanding extends nursing and related disciplinary awareness of how
Victorian patients and partners experience living with an ICD. It did, however, evolve
from the engaged standpoint of being a female cardiac nurse and partner of a patient with
an ICD. Regardless of the efforts made to hold preconceived views or ideas at bay, this
standpoint evidently shaped the research motivation, intent, questions and processes.
Different interests, purposes and processes will produce additional and possibly divergent
insights. Some readers will see this as a limitation of this inquiry. In contrast, van Manen
(1990) suggests phenomenological understandings remain incomplete and provisional.
Hence, new insights are invited to extend this understanding of the phenomenon of living
with an ICD .
9.5
Suggestions for future research
This phenomenological inquiry had the modest intent to understand the patient's and
partner's situation of living with an ICD and how this implanted device is bodily
experienced and integrated. In the process, it identified several issues that might extend
this understanding. Issues discussed here include the need for more information about the
embodiment of the ICD, the patient's experience of multiple shocks, the elective cessation
of the ICD, and the experiences of female patients, male partners and children. Finally,
236
there is a dearth of information regarding the use of the ICD and related experiences
among indigenous and migrant Australians.
9.5.1
The embodiment of the ICD
Implantation of the ICD incurs considerable personal, emotional and financial costs. Given
these costs, there is a clear need for further qualitative and phenomenological
understandings of how patients perceive and comprehend the ICD's presence, power and
potential as a permanently implanted device. For example, a similar study to this research
with other patient groups will enrich and clarify the interpretation offered here that the
ICD is either embodied as a protective and welcomed friend, or existentially rejected as an
intruder.
More understanding is needed of the processes that ground the ICD's embodiment and
helpful strategies for patients who experience adverse device-related events Identification
of the factors that impede the ICD's integration and embodiment might include a review of
the perception of the ICD by patients diagnosed with Twiddler's Syndrome. Such
investigations might also clarify whether, as suggested by doctors, Twiddler's Syndrome
reflects patient non-compliance in caring for their ICD, or as postulated earlier, an
unconscious existential rejection of the device. Anticipated outcomes of such investigations
include interventions to reduce the incidence, distress and costs related to an existential
rejection of the ICD, Twiddler's Syndrome, or requests for elective ICD cessation.
Researchers should also question apparent disparities between professional discourses and
patient's descriptions of living with an ICD. For example, some patients in the current
study reported a satisfactory to good quality of life when surveyed, yet also described
significant existential concerns about the ICD's meaning for their present and future
existence. Kinney (1995) identified several similar limitations of quantitative assessments
of quality of life. Patients in the current research also challenged professional assumptions
that living with an ICD is a chronic illness.
Further phenomenological understanding of living with an ICD will promote greater
sensitivity to patients' experiences in clinical practice. Further understanding of ICD
embodiment may help to inform the designers involved in developing future devices and
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also extend scholarly debates about the impact of biomedical technology for human
existence.
9.5.2
The experience of multiple ICD shocks
Between 3% to 20% of patients have at least one experience of receiving multiple ICD
shocks (Villacast’n et al. 1996). As noted earlier (Chapter 8.2.6), current knowledge of the
conscious patient's experience of multiple shocks relies on incidental case reports. A
multidisciplinary study is needed to extend awareness of the patient's experience of
multiple shocks while conscious. It is unclear, but intuitively suggested from this study
that such an experience thereafter alters the perception of the ICD and possible future
shocks. Multidisciplinary perspectives will contribute a range of interpretations and
increase understanding of this patient experience. Further, such an inquiry could collate
data on the factors predisposing patients to multiple shocks, the specific model of ICD and
the number and joule strength of the shocks. The latter data are important to note because
repeated defibrillating shocks can result in myocardial damage, cardiac dysfunction and
more arrhythmias (Ideker, Hillsley & Wharton 1992).
Examination of the experience of multiple shocks should also identify the appropriateness
the shocks. Evidence indicates that 7% to 39% of shocks are inappropriate or occurring in
the absence of a life-threatening arrhythmia (Daoud et al. 1994; Kou et al. 1991; Nunain et
al. 1995; Tresch et al. 1991; Villacast’n et al. 1996). Experiencing potentially physically
damaging but inappropriate shocks will further complicate the patient's comprehension of
the event and perception of the ICD.
Potential sources of data for studies of the shock experience include the patient's medical
record of related visits to the emergency department, the ICD outpatient clinic and local
doctors. Patient interviews and diaries will provide complement the medical data with
qualitative descriptions of specific experiences. Exploration of the shock experience may
include a review of the immediate paramedic and emergency department management of
patients. For example, the present study revealed the need for emergency department staff
to be better informed about the ICD and its potential complications.
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Finally, exploration of the experience of multiple shocks may identify the support
interventions most effective in minimising the patient's immediate and longer term
distress. Various interventions have been suggested to reduce such distress. Early
proposals included "... hypnosis, meditation, and guided imagery; cognitive restructuring
to aid in the acceptance of role adjustment; and supportive individual and family
counselling to enhance healthy family interaction" (Pycha et al. 1986, p. 845). Recent
recommendations include psychological counselling (Dougherty 1997), cognitive therapy
(Dunbar & Summerville 1997), stress management techniques (Ocampo 2000) and
relaxation techniques, with or without autohypnosis (Fricchione, Vlay & Vlay 1994;
Ocampo 2000). It has long been recognised that multiple shocks incur severe distress for
conscious patients, but no reports located of the implementation of any of these
interventions.
The medical literature makes no mention of whether the psychological distress incurred by
multiple shocks predisposes the patient to an increased risk of further arrhythmias.
Reviews of the physiological effects of psychological distress suggest such a possibility.
These effects include increased neuroendocrine activity, myocardial irritability and
possible arrhythmias, as well as longer term impaired immunity (Boddi et al. 1994;
Dimsdale et al. 1987; Fricchione, Vlay & Vlay 1994; Lampert et al. 1996; Lown 1987; Moser
& Dracup 1995; Schrader 1996). Accessibility to the memory function of the ICD can
provide data on the specific incidence, frequency or nature of arrhythmic activity, any
correlation with the level of the patient's psychological distress and whether interventions
that reduce psychological distress also reduce arrhythmia incidence. Increased knowledge
of the physiological and psychological sequelae of multiple shocks and of specific support
interventions will inform the care and support offered to patients.
9.5.3
Elective cessation of the ICD
The limited discussion in the professional literature about patient requests for the elective
cessation of the ICD reflects differing opinions about the predisposing circumstances. The
first view (Burke 1996) implies that rejection of the ICD reflects the patient's failure to
make the necessary behavioural and attitude adjustments for accepting and integrating the
ICD into daily living. The alternative view (Cucci in Benner & Wrubel 1989) suggests the
distress caused by device related problems underpins the patient's desire for removal or
239
cessation of the device. The current study suggests the attribution of blame to either the
patient or to the device inadequately reflects the complex existential meanings and
concerns inherent in the patient's rejection of their device.
Further research of the lived experience preceding a request for ICD cessation may identify
the situations negatively influencing the patient's perception of the device. Three
suggestions emerge from this study and the related research (e.g., Fabiszewski & Volosin
1992). These situations include the receipt of distressing multiple shocks, a perception of
the ICD as controlling present and future existence, and the need for repeated generator
replacements due to faulty devices. More understanding about elective ICD cessation
requests may facilitate the early identification of patients at-risk of rejecting their device
and the provision of professional support to facilitate and promote ICD acceptance.
Finally, there is a need to extend the limited awareness (e.g., Fabiszewski & Volosin 1992)
of the legal, ethical and physical aspects of ICD cessation and its relationship to euthanasia.
In addition to patient and partner views, focus group discussions involving cardiologists,
nurses and ethicists could frame specific guidelines about elective ICD cessation, the
appropriate counselling for staff, patients and families.
9.5.4
Living with an ICD: More questions
Other phenomenological studies, in different contexts and with patients receiving more
recent devices would extend this understanding of living with an ICD. Additional
qualitative understanding would come from a narrative analysis of the metaphors used by
patients and partners to describe their experiences. Participants in the present study often
used metaphors for describing intensely significant personal situations.
Currently, most knowledge of living with an ICD reflects the experience of older male
patients and the use of the larger abdominal device. In addition to recent technological
improvements and practice changes the ICD is now implanted in an expanding
population. Patients now range from young children to older adults. As well as patients
who have survived a life-threatening arrhythmic event recipients now include patients
who suffer severe cardiac failure symptoms, patients waiting for a heart transplant and
patients determined to need a prophylactic device (Hawthorne, M.H. & Hixon 1994; Moss
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1993; Moss et al. 1996; Mower & Hauser 1993; Trappe 1996; Vitale & Funk 1995). Use of the
ICD as a prophylactic treatment is predicted to bring a four-fold increase in patient
numbers (Brugada, Wellens, & Andries 1996; Kolettis & Saksena 1994). It will also mean
there is a group of patients with an ICD who have not endured the pre-implantation
situations experienced by current patients. Studies of their experience will contribute more
specific understanding of the physical, psychological, social and embodied significance of
the ICD.
More knowledge is needed about the experience of middle-aged female patients. Findings
from the current research revealed the complexity of co-experiencing the menopause while
recovering from ICD implantation. In addition to the vagaries, worries and symptoms of
their changing body, they reported demeaning professional attitudes from male medical
staff with respect to bodily symptoms and from other males about the ICD's impact on the
female body. Consideration of other middle-aged women's experiences should examine
any association between the hormonal changes of menopause and the onset of arrhythmic
events and the safety of hormone replacement therapy for menopausal women who need
an ICD.
Second, more information is needed about the partner's experiences, concerns and
changing circumstances over time. The current study revealed an experience of
considerable responsibility, vulnerability and distress, with many unmet information and
support needs. Issues worthy of further review include the changed meaning of home for
partners, as well as the experience of being a male partner. Elsewhere, female partners
whose spouse has severe heart failure endure more burdens and stress than male partners,
a situation attributed to the expected social roles of female partners (Karmilovich 1994).
The anticipated increasingly younger adult population with an ICD also increases the need
to understand the experiences of younger partners.
Third, as recognised here and elsewhere (Dougherty 1994, 1997), clinicians need an
understanding of the experience of young children whose parent has an ICD. This research
revealed how children sometimes witness their parent suffering an adverse event. Despite
the distress of the situation, children often disguise their reactions and hide their feelings.
Researchers need to evaluate if community health nurses and school counsellors might
provide alternative avenues of emotional, social and informational support, especially
after a parent's critical ICD-related incident. The recognition and support of the related
distress may reduce the potential for future psychological problems for children in this
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situation. Such support may also ease the felt guilt of partners struggling to adequate
devote their time and attention to the needs of both the patient their children.
Fourth, although not a direct consequence of conversations with participants, a chance
meeting with the mother of a teenage daughter with an ICD identified the need to support
young patients who require an ICD. This mother attended a support group at which I was
an invited guest. She described within months of receiving an ICD her daughter become
withdrawn and frustrated. The daughter was angry at enforced career path changes and
resented the device for making her feel different to her peers. Her mother could not locate
other parents of children with an ICD, or obtain advice from her daughter's doctors.
Attending another hospital's support group brought the first chance to openly share
concerns and receive supportive advice. Redressing the recognised need (Dougherty 1997;
Ocampo 2000; Vitale & Funk 1995) for family-focused interventions that support patients
and partners will need to account for the wide age of patients of need and receive an ICD.
Finally, little is known of how migrant or indigenous Australians experience of living with
an ICD, yet their risk of heart disease makes it likely that they will be among the
population who will need this device. For example, compared to other Australians, the
indigenous population has a higher incidence of heart disease, at a younger age, and with
a 50% mortality rate (Senes-Ferrari 1999). Heart disease is similarly high among migrant
populations who comprise almost "about half" the participants of cardiac rehabilitation
programs in Melbourne (Mee et al. 1997, p. 281). The delivery of appropriate clinical care,
education and support requires awareness of specific cultural factors likely to influences
the perception, experience and embodiment of the ICD.
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9.6
Summative comments
This chapter discussed the theoretical, practical and future research significance derived of
this study. It proposed the implementation of several recommendations and future
research to improve local clinical practices and extend the understanding of the
phenomenon of living with an ICD.
Finally,
three situations support the timeliness and relevance of the study and its
recommendations. First, insights from this and other recent Australian research (McKinley
et al. 1997) contributed to an illustrated patient educational booklet about living with an
ICD sponsored by the Cooperative Research Centre for Cardiac Technology, Sydney
(Smithers 1999).
Second, the researcher accepted an invitation to attend a support group meeting started at
two Victorian hospitals during the conduct of this study. Each group was well attended,
with an obvious camaraderie between patients, partners and the staff. Participants of each
meeting openly appreciated the shared discussions and opportunity to have questions
addressed. Similar to the participants in the present study, their request for information
most often related to the ICD's functions or shock(s), symptom management and advice
about various activities of daily living. Insights and understandings from this study were
discussed in one meeting. None of those presented had been a participant in the study, yet
positively affirmed their sense of familiarity with the described meanings of particular
situations, events and experiences related to living with an ICD. Third, the researcher's
continued clinical practice provided numerous opportunities to share the study's insights
with other nurses. It also affirmed the need for a staff education program about ICDs and
related experiences.
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CHAPTER TEN
CONCLUDING REFLECTIONS
Questioning indicates the existence of an unsettled issue, a difficult matter, an
uncertainty, a matter for discussion. It also invites a reply, a dialogue, a searching
out of opposites and similarities. It opens possibilities and leads, in some sense to
uncertainty, for it throws what may have been thought secure into disequilibrium
or imbalance (Bergum 1991, p. 57).
10.1
This
Wondering and Reviewing
chapter
briefly
reviews
the
experience
of
conducting
a
hermeneutic
phenomenological exploration of living with an ICD. In keeping with the reflective
questioning intent of a phenomenological inquiry, the research involved the specific
phases of wondering and reviewing (what was previously known), exploring and
presenting (what was uncovered) and signifying (making sense of an extended
understanding).
As explained in Chapter One, the questions broadly framing this inquiry arose as early as
1990. Professional and personal experiences, together with anecdotal evidence from other
Victorian patients and partners, suggested that living with an ICD involved numerous
difficulties, concerns and uncertainties. Reviews of the professional literature provided
substantive evidence about the ICD's efficacy, reliability and cost-effectiveness and patient
outcomes. The literature indicated most patients were older males and likely to endure
various physical and psychological problems. It also included data about patient reemployment rates and quality of life. The limited evidence about partners indicated they
also faced numerous psychosocial problems. There was comparatively little information
about the patient's perception of the ICD, recovery patterns, or day to day learning needs,
and few positive stories about the patient's or partner's experience.
This research formed the second component of a project designed to provide information
about the Victorian ICD program, the outcomes and experiences of its patients and their
partners, and an understanding of the phenomenon of living with an ICD. This statement
244
belies the complex preparation required in the development and conduct of the project.
The first study (Chapter 1.3.2) surveyed the outcomes of Victorian adults with an ICD. My
inexperience necessitated considerable learning about questionnaire construction, gaining
accessing specific populations and undertaking appropriate data collection, analysis and
interpretation. The second study, described in this thesis, explored the phenomenon of
living with an ICD as experienced by a group of Victorian patients and partners. Specific
preparation included reviews of the philosophy and associated research practices of
hermeneutic phenomenology. Preparation for the practical aspects of the research also
included a review of qualitative research designs and methods, and the process for
conducting ethically sensitive research with vulnerable participants.
10.2
Exploring and Presenting
In conjunction with the actual conduct of this inquiry, the writing and re-writing of this
thesis provided a valuable opportunity to offer a scholarly review of van Manen's (1990)
approach to hermeneutic phenomenology (Chapter 3.3). This human science methodology
interweaves systematic thematic analysis with detailed written description and
interpretation (van Manen 1990). Although used by nurses to explore various other human
phenomena, it has not previously been reported in relation to the phenomena of living
with the risk of arrhythmias or living with an ICD. One phenomenological study in this
field (Doolittle & Sauv? 1995) explored patient and partner experiences of the patient's
survival of cardiac arrest but did not discuss the impact of the patient's receipt of an ICD
on these experiences. The current research confirmed phenomenology's value for
questioning, exploring and investigating living with an ICD.
It is also relevant to discuss the ethical and methodological implications of using
hermeneutic phenomenology to inform an exploration of a sensitive research topic with
vulnerable participants. Except for critiques of Heidegger's philosophy (e.g., Holmes 1996;
Osborne 1995), there is little literature about the ethics of phenomenological research. This
contrasts with the recent attention given to the need for methodological congruency in this
form of inquiry (described in Chapter 3.2). Some scholars (e.g., Crotty 1996; Hammond,
Howarth & Keat 1991) recommend a first-person approach to phenomenologising. This
approach requires research participants to set aside their preconceptions, intuitively
concentrate on their immediate experience of a phenomenon and then describe its
245
immediate appearance or manifestation. This study assumed the intense, protracted
concentration involved in this first-person approach could re-awaken emotionally
distressing memories of particular experiences for patients and partners. Discussions with
peers confirmed this was an unnecessary risk for participants. These discussion also
affirmed Lawler's (1998) view that practice realities frame the specific approaches nurses
need to adopt when conducting a phenomenological study. Van Manen's (1990) method of
hermeneutic phenomenology offered the means for conducting an ethically sensitive
exploration of living with an ICD through the process of borrowing and reflecting on
participants' experiential descriptions. The responsibility of phenomenologising in this
approach falls to the researcher (van Manen, M., 1996, pers. emailed comm. 9 Dec.).
Numerous qualitative research texts provided advice for addressing other ethical aspects
of this research (Chapter 3.4.4).
Second, it is also appropriate to reflect on the role of the self as an instrument involved in
shaping all phases of the inquiry. The desire to avoid deception and to enhance trust
resulted in an open acknowledgment of my status of being a partner and a nurse in the
applications made for funding, for support from hospital staff and for ethics approval. It
was also noted in my contacts with patients and their partners. This acknowledgment may
have contributed to the positive response to the survey and the numbers of subsequent
telephone calls from patients and partners. Nonetheless, my status as a partner required
particular ongoing awareness throughout the present study. Through self-reflectivity and
peer review it was possible to stand back from my prior understanding to note the
unexpected as well as the familiar when exploring the explicit and implicit meanings in the
participants' descriptions.
Third, this self-awareness also underpinned the intent not to unduly influence, direct or
colour the descriptions offered by participants during our conversational interviews.
Although wanting a shared engagement I had planned to focus on listening closely to their
accounts, and leave answering any questions about my personal situation until the end of
our recorded conversation. As it happened, such questions were immediately and honestly
answered when they arose. The reality was that it was inappropriate to expected an
engaged relationship if I could not immediately reciprocating the disclosure and trust so
readily offered by the participants.
The fourth issue relates to what I called the 'Christmas tree' conversation process.
Participants were invited to freely discuss their experience of living with an ICD. The
246
relatively little structure imposed on the conversation enabled a free-flowing conversation.
Nevertheless, I felt uneasy when the participant's focus digressed toward seemingly
unrelated topics. Their shared anecdotes, often in very frank language, about the family,
work or children often dissolved into much laughter. Yet, as if pre-empting my concern
and without any prompting, the participant then began discussing an often significant and
vulnerable aspect of their experience. Their conversation would again meander into some
light relief before returning to describe another significant and meaningful issue related to
living with an ICD. This progressive to-and-from form of disclosure caught me by surprise
because it was so unlike the interview processes described in qualitative research
textbooks. In hindsight, this process probably reflected our shared tentativeness. No
participant had previously discussed their stories in such depth, either with a health
professional or someone in a similar situation and often wondered aloud if their
experiences, ideas, reactions were normal. In turn, I also was learning much about the need
for
flexibility,
responsiveness,
awareness
and
engagement
when
facilitating
a
conversational interview.
Presentation of the product of these conversations took three forms. The initial analysis of
transcribed texts of the conversations produced a description of individual experiences of
living with an ICD (Chapter 4). Subsequent thematic and reflective analyses produced the
phenomenological description of the collective lived experience of being a patient (Chapter
5) and, similarly, of being a partner (Chapter 6). The final, the philosophically informed
hermeneutic analysis (Chapter 7) resulted in an interpretive account of the ICD-asexperienced, perceived, integrated, embodied and comprehended. As revealed in the
following review, these collective presentations disclosed much about the complex
struggles, challenges, ambiguities and meaning of living with an ICD.
10.2.1
Being a patient
As disclosed by patients in this study, living with an ICD is a complex and challenging
existence interwoven with embodied meanings about the vulnerable self, bodily
awareness, the ICD and layered social responsibility. It is thematically constituted in and
through the lived experience of being disrupted, reconstructing life, appreciating and
celebrating life, and accommodating the ICD. These dimensions reflect the changing
nature of the patient's existence. Determination, time, the absence of adverse events and
247
trust in the body and the ICD positively enhance the resumption of everyday activities and
return to a productive life. Contrary to professional views, it is not experienced as living
with a chronic illness. Instead the arrhythmia risk becomes likened to a physical aberrancy
that occasionally interrupts and threatens an otherwise busy life. The ICD suppresses this
threat and allows the quick resumption of usual activities, but regardless of its presence,
some ambivalence and uncertainty become the norm. Aware of a probable early demise,
the patient strives to get things in order, avoids wasting time and moves forward through
personally meaningful activities. In this context, for most patients the ICD is
accommodated as a protective insurance policy and a friend. Other patients, despite the
resumption of their usual activities, cannot tolerate its uncomfortable and threatening
presence that manifests either in distressing multiple shocks or a potential interference in a
desired death. They experience the ICD as a threatening intrusion.
The interpretive analysis of the ICD-as-experienced (Chapter 7) suggested the immediate
perception of the ICD is one of being in awe of a strange object in the body. Thereafter,
alternative perceptions of its presence, power and potentiality engender significantly
different existential and ontological meanings. On the one hand, the ICD's presence as a
stranger perceptually diminishes into a valued acceptance, appreciation and integration of
that which instrumentally restores to the body the security it lacks. The ICD's
demonstrated reliability and effectiveness promotes its embodiment as a trusted and
valued friend. In contrast, other patients perceive the ICD as an inescapable object. Its
physical presence spatially occupies and distorts the body, while its technological
presence, power and potential imply control of the body, dying and death. In this instance,
the ICD is apprehended as a threatening intruder that exacerbates vulnerability, alienates
the self, distorts present existence and thwarts the possibility of an authentic, meaningful
future. The desire to be rid of its presence in the body and life is thus defined as an
existential rejection of the ICD.
Additional meaning about living with an ICD derives from and reflects the patient's
engagement with the everyday world and in particular, with nursing, medical and media
discourses about medical technology. Professional texts, for example, describe the ICD as a
lifesaving technology that, in itself, has a neutral impact on the patient's life. Within this
framework, problems associated in accepting its presence reflect a maladjustment or
maladaptation, that is, the patient's failure to make the necessary behavioural changes
(e.g., Fricchione, Olson & Vlay 1989). Disparities are evident between such professional
views and the patient's comprehension of the ICD as either a lifesaving or an alienating
248
technology. Further, through its presence, power and potentiality the ICD endows and is
ascribed significant existential meaning for the body, existence, dying and death. Living
with an ICD does not simply mean having a technological object implanted into the body.
Rather, in and through perception and embodied comprehension the patient becomes the
body-with-ICD, either at home with a trusted friend, or alienated by the continued
presence of the ICD as a threatening intruder.
10.2.2
Being a partner
As described by partners in this study, living with an ICD is an experience of embodied
vulnerability, and of an onerous responsibility, commitment and concern for the patient's
well being. The initial period after the patient's arrhythmic event and ICD implantation is a
time of being disrupted. The perceived responsibility to protect the patient is made all the
more difficult by an impaired ability to comprehend complex information (if offered),
minimal professional support, and trial and error strategies for symptom recognition and
management. Being a partner also comprises the dimensions of reconstructing life,
appreciating and celebrating life and accommodating the ICD. It takes time to trust this
device. The patient's receipt of a single shock provides needed evidence of the ICD's
reliability and effectiveness as a protective insurance. For the partner, this protection
sustains that which is pivotal and central to their identity, namely their relationship to the
patient. Thus, perceived threats to the patient — such as an arrhythmic event, or cessation
of the ICD as an active treatment — also threaten the partner's existential sense of self and
well-being.
10.3
Signifying
The significance of this research is underpinned by the rigorous attention to the
philosophical directions of hermeneutic phenomenology, its inquiry processes and the
written descriptions that resulting from three iterative layers of analysis. The descriptions
offered in Chapters Four, Five, Six and Seven collectively present an insightful
understanding of the complex nature and meaning of living with an ICD for the
participants. Previously unexamined insights into the embodiment of the ICD highlight
249
the significance of its ambiguous presence, power and potential. Understanding the ICD as
that which can be integrated as an embodied friend, or existentially rejected as an
unwelcome intruder is pedagogically significant for nurses and other clinical staff. These
insights have the potential to inform and transform clinical practice (Chapter 9). Specific
recommendations include the need for an ICD case manager, a staff education program, a
patient education and support program and a community education program. Clinical
nurses working in cardiac wards are ideally situated to implement and evaluate the
proposed recommendations. These recommendations may be useful for other Australian
contexts, but require careful review for other settings.
This project also offers a further contribution to the scholarly debate about the relationship
between technology and human existence. To date, there is minimal understanding of
what it means to live with a permanent, life-saving device inside one's body. The ICD
epitomises the intersection between 'high-tech' modern technology and being human. This
research revealed that the embodiment of the ICD reflects a merger of perceptions about its
presence, power and potential, and the patient's social experiences.
This research hopefully encourages readers to thoughtfully reflect on what it is like to live
with an ICD and, for those who are clinicians, consider practice improvements to
positively enhance the patient's and the partner's experience. The full significance of such
reflection would ideally promote further questioning, wonder and inquiry about this and
related human phenomena. There is no endpoint. As van Manen (1995) notes, "... the
phenomenological quest can never ever be conclusive: it should only make people wonder.
— That's the point."
250
APPENDICES
A
Communications: Staff and participants
1.
Letters from cardiologist to patient
2.
Request: Patient's permission for release of details
3.
Explanatory Statement Study 1 (Survey)
4.
Explanatory Statement Study 2 (Current research)
5.
Consent Form
6.
Ethics Approvals letters
B
Preliminary understanding
C
Field Guides
1.
Interview topics
2.
Field Note Sheet
D
Audit Trail
E
Working documents: Progressive findings
1.
Patients' aspects of experience, meanings
2.
Partners' aspects of experience, meanings
3.
Participants' recommendations for practice
F
ICD Information Checklist
G
Glossary of Technical Terms
251
Appendix A: Communications: staff and patients
1.
Letter from cardiologist to patient
Hospital Letterhead
Dear Sir / Madam (by name if possible)
I want to introduce you to a research project being undertaken by Mrs Suzanne Reid. Suzanne
is a Victorian nurse who is studying for her Doctor of Philosophy at the Faculty of Nursing, at
the University of Technology, Sydney. Her study and research is funded by a scholarship from
the Cooperative Research Centre for Cardiac Technology (Sydney). Her interest in how
patients and families experience living with an implantable defibrillator stemmed both from
her background as a coronary care nurse, and from having a family member who received a
defibrillator.
Her research involves a questionnaire review of the outcomes and experiences of patients who
have received an implantable cardioverter defibrillator.
She is hoping to mail this
questionnaire to all adult Victorian patients who have a defibrillator. This project has the
support of all Victorian cardiologists who are implanting these devices, and it has been given
ethics approvals from each hospital where the defibrillator is implanted.
This project will provide valuable information about patients' experiences for nurses, doctors
and other health professionals who need to care for patients like yourself. It may be used in the
development of education and support programs for patients and their families.
You are under no obligation to take part in the study. If you prefer not to take part you do not
need to respond to this letter.
If you are interested in helping with this research, I need your permission to give Suzanne your
name and address so she can mail you more information about it. You will need to complete
and return the following section in the enclosed envelope.
Yours sincerely,
................................
(cardiologist)
252
Appendix A: Communications: staff and patients
2.
Request: Patient's permission for release of details
Hospital Letterhead
I (Name and address):
.........................................................................................................................................
.........................................................................................................................................
.........................................................................................................................................
authorise Dr. [NAME OF DOCTOR AND HOSPITAL) to provide my name and address to
Suzanne Reid so she can mail details about her research: Living with an implantable defibrillator.
Signed: ..........................................................
Date:
..........................................................
253
Appendix A: Communications: staff and patients
3.
Explanatory Information Sheet: Survey: Study 1
University / or Hospital Letterhead
Project title:
Name of researcher:
Living with an Implantable Cardioverter Defibrillator (ICD)
Suzanne S. Reid
Dear Sir / Madam
I am seeking your help with a research project that I am doing as part of my study for a Doctor
of Philosophy (Nursing) Degree at the University of Technology, Sydney. My study is funded
by a scholarship from the Cooperative Research Centre for Cardiac Technology, Sydney. My
research project is called "Living with an Automatic Implantable Defibrillator: Victorian
Patients' Experiences". It aims to collect information about what it is like for Victorian patients
to live with an implantable defibrillator, so that nurses and other health care workers can be
better informed when caring for patients like yourself. My interest in this topic stems both
from my background as a coronary care nurse, and my personal situation where a family
member has a defibrillator.
This project has been discussed with the cardiology staff caring for patients with implanting
defibrillators and/or holding outpatient defibrillator clinics, and approved by the Ethics
Committees of these hospitals. The research findings and processes will be discussed regularly
with my supervisors, and only the aggregate results presented to the University in the form of
a doctoral thesis. A report will also be provided to each of the above hospitals, and the
findings may be discussed in relevant professional conferences, and journals. All study
material will be retained and securely stored for 7 years.
This part of the study involves a questionnaire. It seeks general information about the changes
people you have had in your life since receiving the defibrillator, the contact you’ve had with
hospitals, nurses, or support groups, and some personal details. You are under no obligation
to take part. Should you decide not to complete the questionnaire, it will not affect your
management or treatment in any way.
If you decide to take part, please read and complete the enclosed questionnaire. It will involve
about 30-45 minutes of your time to answer the questions. Do not put your name or address on
the questionnaire. Post it back in the enclosed stamped addressed envelope within two weeks
of receiving this package. It will be assumed that by completing the questionnaire you have
consented to take part in this part of the study. The questionnaire will be coded with a study
number, and all information will be securely stored. You will not be identified within reports
of the study. At the end of the questionnaire there is an invitation for you and your partner (if
applicable) to consider taking part in one or more interviews. In the interview I would like to
discuss your experiences in more detail. If you and your partner agree to be interviewed, you
will need to contact me by telephone to express your interest, and to negotiate an appropriate
time and place. You will also shortly receive a follow-up letter thanking you for your help.
You are free to withdraw from this research project any time you wish, without having to give
a reason, and with the knowledge that it will not affect your future care. Do feel free to discuss
this project with your family. If you have any concerns about this research feel free to contact
me, or my supervisor Sharon McKinley (at the Faculty of Nursing, University of Technology,
Sydney - Ph.: 02 926 8281).
Thank you for your interest.
(Mrs.) Suzanne Reid (Researcher)
Telephone: 03 52484117
Please Note:
This study has been approved by [NAME OF HOSPITAL] and The University of
Technology, Sydney Human Research Ethics Committees. If you have any complaints or reservations
about any aspect of your participation in this research you may contact the Ethics Committee through the
Research Ethics Officer, Ms Susanna Davis (Ph.: 02 330 1270). Any complaint you will make will be
treated in confidence and investigated fully and you will be informed of the outcome.
254
Appendix A: Communications: staff and patients
4.
Explanatory Statement: Study 2: Patient and Partner experiences
University / or Hospital Letterhead
Project title:
Name of researcher:
Living with an Implantable Cardioverter Defibrillator (ICD)
Suzanne S. Reid
Dear Sir / Madam
I am seeking your help with a research project that I am doing as part of my study for a Doctor
of Philosophy (Nursing) Degree at the University of Technology, Sydney. My study is funded
through a scholarship from the Cooperative Research Centre for Cardiac Technology, Sydney.
My research project is called "Living with an Automatic Implantable Defibrillator: Victorian
Patients' Experiences". It aims to collect information about what it is like for Victorian patients
to live with an implantable defibrillator. Although this may or may not benefit you, the
information from this project will help nurses and other health care workers when caring for
patients like yourself. My interest in this topic stems from my background as a coronary care
nurse, and my personal situation where a family member has a defibrillator.
This project has been discussed with the cardiology staff caring for patients with implanting
defibrillators and/or holding outpatient defibrillator clinics. It has been approved by the
Ethics Committees of these hospitals. The research findings and processes will be discussed
regularly with my supervisors, and the findings presented to the University in the form of a
doctoral thesis. A report will also be provided to each of the above hospitals, and the findings
may be discussed in relevant professional conferences, and journals. All study material will be
retained and securely stored by me for 7 years.
This part of the study involves interviews with patients who have an implantable defibrillator,
and with their partners (if applicable).
I would like to hear your stories about your
experiences since you received the defibrillator. There are no fixed questions, as I prefer that
you tell your stories in your own way. The interview will last approximately sixty to ninety
minutes, and will be at a time and place convenient for you. It will be tape-recorded. If you
want to talk further of your experiences a second interview can be arranged. You need to
know that it might be upsetting to talk about some of the aspects of your experiences. If you
become upset at any time, you be supported until you feel ready to continue the interview.
Apart from this potential effect there are no anticipated risks of this project. You will be
offered a copy of the transcript of your interview to keep, and you are free to ask for material to
be deleted.
You are under no obligation to take part. You are also free to withdraw from this research
project any time you wish, without having to give a reason, and with the knowledge that it will
not affect your future care. If you decide to take part, you will be asked to sign a Consent
Form to acknowledge that you have understand the nature and purpose of this project, and
have had any questions answered. Feel free to discuss this project with your family. If you
have any concerns about this research feel free to contact me on the telephone number below,
or my supervisor Sharon McKinley (Faculty of Nursing, University of Technology, Sydney).
Thank you for your interest.
(Mrs.) Suzanne Reid (Researcher)
Telephone: 03 52484117
Please Note:
This study has been approved by the [NAME OF HOSPITAL] and the University of
Technology, Sydney Human Research Ethics Committees. If you have any complaints or reservations
about any aspect of your participation in this research you may contact the Ethics Committee through the
Research Ethics Officer, Ms Susanna Davis (Ph.: 02 330 1270). Any complaint you will make will be
treated in confidence and investigated fully and you will be informed of the outcome.
255
Appendix A: Communications: staff and patients
5.
Consent Form
University / or Hospital Letterhead
RESEARCH CONSENT FORM
I..........................................................
agree to participate in a research project entitled:
(name of patient)
Living with an Implantable Cardioverter Defibrillator, being conducted by Suzanne Reid.
My agreement is based on the understanding that:
1.
My involvement entails taking part in a tape-recorded interview. During the interview I
will be talking about the my experiences since I received an implantable defibrillator. I
understand this part of the project aims use interviews to collect information for nurses
and other health care workers about the experiences of Victorian patients who have an
implantable defibrillator, and of their partners.
2.
The following risks inconveniences and discomforts have been explained to me. I am
aware that discussing some of my experiences might be upsetting, but that Suzanne will
support me through this. I understand that the interview/s will be at a time and place
convenient to myself and will last approximately sixty to ninety minutes. I am also
aware that each interview will be tape-recorded, and I can ask for the tape to be stopped
at any time.
3.
I have read the attached "Explanatory Information Sheet for Participants of Study 2" and
understand the general purposes, methods and demands of the study where
appropriate.
4.
I understand that the project may not be of direct benefit to me.
5.
I can withdraw from the study at any time, without prejudicing my further management.
6.
I am satisfied with the explanation given in relation to the project so far as it affects me
and my consent is freely given.
Signatures:
Signed by the Investigator:....................................................
Date:...................
Signed by the Patient: ..........................................................
Date:...................
Please feel free at any time to contact the researcher with regard to any queries or concerns you
may have with regard to your participation in this project.
256
Appendix A: Communications: staff and patients
6. Ethics Approval
257
Appendix A: Communications: staff and patients
6.
Ethics Approval
258
Appendix A: Communications: staff and patients
6.
Ethics Approval
259
Appendix A: Communications: staff and patients
6.
Ethics Approval
260
Appendix A: Communications: staff and patients
6.
Ethics Approval
261
Appendix A: Communications: staff and patients
6.
Ethics Approval
262
Appendix B:
Preliminary Understanding
(Working notes about prior understanding and thinking about living with an ICD)
18.01.93 Areas needing to be researched (identified in personal journal)
• Everyday experiences of patients, partners and their self-help coping strategies
• The need to provide patients, partners with a teaching program about living with an ICD
• The need for support groups and access to suitably trained counsellors
• The need for cardiac care & emergency department nurses and doctors to be better informed
about ICD, & related emergency care (such as CPR, defibrillation, being in contact with patient
at the time of a shock, whether patient can be X-rayed)
17.9.94
Initial questions and issues framing proposed research
• Need for information about Australian patient, partner experiences & clinical practices
-What is the Victorian patient's experience of living with an ICD? (Their information/
support needs; changes or transitions over time; the reality, quality, tensions, contradictions
in their experience; its meaning, their definition of their health status); how is ICD
incorporated into the body and the self (including being shocked); how do actions,
judgements of others shape their views?
-What is the partner's experience of living with an ICD? (Information, support needs?)
• Why these issues?
-Insights from clinical practice & being a partner that few clinicians know about the ICD;
that patients & partners need more preparation and ongoing education and support,
especially over the first six months
-Lack of published data about living with an ICD for Australian patients & partners
• Possible theoretical directions in the research
- Consider the impact, implications of living with an implanted mechanical device;
- Explore the notion of technology in the context of implanted lifesaving devices
- Use phenomenology: to explore, understand the relationship of tools/technology & the
body; question if the patient develops a sense of connection with their device; uncover the
meaning of the ICD in relation to specific experiences & the body
• Possible research strategies
- Survey the population who have an ICD for data about Australian patient outcomes
- A longitudinal case study with 1 to 2 couples from arrhythmic events to ~6-12 months
after ICD implantation
- Interview patients/partners to understand their experiences (structured or open ?)
• Own understanding (as a partner) of living with an ICD
-The overwhelming vulnerability & anxiety about patient's health, numerous investigations,
lack of information, sense of unknown & isolation;
- concerns about the EPS (patient's awareness of induced arrhythmia; my fears that it might
invoke an irreversible arrhythmia)
- as a cardiac care nurse knowing about danger of arrhythmic events exacerbated my fears,
yet had to reassure to my husband and family;
- other nurses and doctors assumed that because I was a nurse I knew about the ICD
- anger at lack of teaching & support programs, compounded by platitudes ("What do you
expect? You're on the fringe of technology"; "You'll be right, just have faith")
-reminders from other sources that other patients and partners experience similar sense of
vulnerability, insecurity, exhaustion, as well as need for information and support, especially
for first 6 to 9 months after ICD implantation, or after unexpected related events
263
Appendix C:
1.1
Field Guides
Possible Conversation Topics For Patients
Review processes, answer questions:
~5-10 mins:
- overview of research: several participants, recorded conversations; protecting identity
- conversation process: person to tell their story in their own way; pause recorder any time,
- at end of conversation: review the experiences and processes; offer a copy of transcript
- can later request deletion of sensitive information
Has Consent form been signed?
Introduction
" I'm interested in learning about your experiences of living with an ICD: when you first
learned you needed the ICD, what it was like when you got it, your experiences with health
care workers, and what life has been like since. I'm interested in the everyday, ordinary things,
as well as anything that stands out for you."
? Initial experiences
(specific instances, examples, days)
• on learning of need for ICD: Did you know what the ICD was? Who explained it?
• on waiting for ICD: How long did you wait? Describe a 'good' day / 'bad' day
• on receiving ICD: First impressions? Recollections of the time in hospital
• on going home: What advice did you receive / need?
• recollections of first day / weeks at home: Describe a good day / a bad day
? Family / friends / workmates
• telling others about the ICD: What was their reaction?
? Subsequent Living with the ICD
• being prepared for lCD: What support or advice was needed?
• daily life with the ICD: How has life changed? (Home, work, driving?)
• awareness of ICD: How aware are you of the ICD
Any concerns?
? ICD Shock
• if been shocked: Conscious at the time? Any warning?
• being shocked: Describe the shock. What did you do afterwards?
• meaning of being shocked: What sense did you make of being shocked?
? Meaning of living with an ICD
• for self, for family, for work colleagues: Others' view of the ICD
? Health care staff
• health care staff: How did nurses/doctors help or hinder your experience?
• nursing knowledge: What do nurses need to know about life with an ICD?
• improving health care: Specific suggestions
? Other comments / questions?
• Areas I haven't mentioned?
Conclude:
Review main points of discussion, process. Acknowledge contribution
264
Appendix C:
1.2
Field Guides
Possible Conversation Topics For Partners
Review processes, answer questions:
~5-10 mins:
- overview of research: several participants, recorded conversations; protecting identity
- conversation process: person to tell their story in their own way; pause recorder any time,
- at end of conversation: review the experiences and processes; offer a copy of transcript
- can later request deletion of sensitive information
Is Consent form signed?
Introduction
"I want to learn about being a partner when the patient has an ICD. I'm interested in your
experiences: when you first learned your spouse needed an ICD, what it was like for you when
they got it, your experiences with health care workers, and what life has been like since. I'm
interested in the everyday, ordinary things, as well as anything that stands out for you."
? Initial experiences
(specific instances, examples, days)
• on learning of need for ICD: Did you know what the ICD was? Who explained it?
• on waiting for ICD: How long ? What was the waiting like? Good day ?
• on spouse's receipt of ICD: First impressions of ICD? Your experience of this time
? Spouse's return home with an ICD
• on spouse's return home: What advice did you receive / need? Recall first day / weeks at
home. Describe a good day / a bad day. Who could you call for advice or help?
? Family, friends
• telling others about ICD: How have your explained ICD? Your response?
? Spouse's receipt of ICD shock/s
• seeing spouse being shocked: Was it what you expected? Your reactions and actions?
What did it mean for you?
? Subsequent Living with the ICD
• daily life since ICD insertion: Has life changed? How?
• coping: What knowledge most helpful? Your concerns?
• meaning: Describe what ICD meant for you, your family
? Health care staff
• knowledge of living with ICD: What do health care staff need to know?
• improving health care: What things could be improved? Suggestions or strategies?
? Other comments / questions?
Conclude:
Review main points of discussion, processes; acknowledge
265
Appendix C:
2.
Field Guides
Field Note Record
Interview No................................
Date:.................
Equipment
Check supplies: pens / consent form / explanatory information sheet / notepad. Taperecorder (batteries/ pre-labelled tapes ); pre-test (have spare recorder).
Token gift for participants (eg small pot-plant).
COMMENTS:...............................................................................................................
....................................................................................................................................
....................................................................................................................................
Self
Arrival time; dress & appearance; particular influences; informants' perspectives
COMMENTS:.............................................................................................................
..................................................................................................................................
..................................................................................................................................
Research Setting & Context
Arrival............................................ Time of day......................................................
Place of interview......................................................................................................
Those present.............................................................................................................
Duration of Interview.................................................................................................
Setting.......................................................................................................................
Atmosphere...............................................................................................................
Strategies needed.......................................................................................................
Social relationships ..................................................................................................
COMMENTS:.............................................................................................................
..................................................................................................................................
..................................................................................................................................
Interview seating arrangements / room (Do diagram on back of page)
.................................................................................................................................
.................................................................................................................................
Ethical issues + Initial thoughts / ideas / reflections
................................................................................................................................
................................................................................................................................
266
1994 1995
Planning
1994:
June
Date Action
(v) recording the study
(iv) ethics in qualitative
research (sensitive topics,
vulnerable participants)
(iii) narrative-style inquiry
Initial research plans
Intent: To explore living with
an ICD as experienced by
Australian patients and
partners. Design included:
• Survey Victorian patients
• Phenomenological study of
living with an ICD.
Initial literature review:
(i) ICD-related experiences;
(ii) phenomenology as a
research method;
Rationale / Outcome
Appendix D: Audit Trail
267
(iv) Discussions with Professor van Manen confirmed minimal literature discussion about the ethics of
phenomenological research; hence, reviews conducted of ethics & related issues in qualitative research (eg.,
Demi & Warren 1995; Lincoln & Guba 1985; Munhall 1988; Punch 1984, 1986; Ramos 1989; Wilde 1992).
(v) Documenting decisions & actions (as an audit trail or quality check, see Schwandt & Haplern 1988).
Documents included: 'Preliminary understanding' (record of origins, preconceptions: Appendix B); a personal
journal (recorded & reflected on methodological, ethical, practical issues, & critically reflected on personal
reactions, hunches, thoughts and use of self as a research instrument; field notes (recording during / after the
interviews: Appendix C); and, Working Documents (evidence of data condensation: Appendix E).
Reviewed a broad range of literature in preparation for designing the 2 separate studies of the project
(i): Specifically drawn from published medical and nursing research in the field of cardiology.
(ii) - phenomenology's philosophical foundations (eg., Bossert 1985; Embree et al. 1997; Hammond, Howarth &
Keat 1991; Heidegger 1962; Kockelmans 1967; Merleau-Ponty 1962; Solomon 1987; Spiegelberg 1970, 1975,
1976, 1985; Stapleton 1983; Stewart & Mickunas 1974);
- contemporary views of phenomenology (eg., Barritt et al. 1985; Crotty 1996; van Manen 1990);
- phenomenology as research (eg.,Barritt et al. 1985; Bergum 1991; Giorgi 1970; Kestenbaum 1982; Wilkes 1991)
(iii) Churchill and Churchill (1982);
Clinical and personal experiences, and an initial review of the related literature demonstrated deficiencies in the
knowledge of what it meant to live with an ICD. The phenomenologically-informed methodology of van Manen
(1990) offered a practically-oriented means of exploring this lived experience. Based on reading of texts on
narrative, narrative analysis, and qualitative research suggested that the use of conversational interviews (van
Manen 1990) with patients and partners provide stories of how an ICD is encountered. Awareness of my place
in such a project meant acknowledging the personal motivations for this project, and the steps for minimising
personal bias.
1995:
June
June
Starting
1995:
Jan- May
Planning
1994: Oct
Date
Seeking ethics approval
(i) Multiple copies, different
format research proposal
(ii) Multiple negotiations
with nursing, medical, Ethics
Committee personnel
(iii) Need for a staff member
to be nominated a coinvestigator; unanticipated
administrative delays; oral
presentation of the research
268
Research proposal given to each person involved with gaining ethics approval and patient data (see below).
Applications made to 5 Victorian public hospitals and the University of Technology Sydney (UTS)
(i): Each hospital had a different proposal format; each required multiple (up to 16) copies.
(ii): After extensive personal and written communication, obtained support from each hospital's Director of
Nursing, implanting cardiologist, Director of Cardiology, and Director of Medical Services. Usually each person
took around five days to review and approve the project, but it took one cardiologist six weeks and several
telephone calls before obtaining their approval and support.
(iii): Since I was not a staff member, hospital Ethics Committees expected sponsorship from a staff member who
in most instances was to be cited as a co-investigator. Requests for sponsorship from the Nursing department
were always referred to the Medical Department, and then to the cardiology department. Fortunately, each
implanting cardiologist unreservedly supported the application. Receipt of written support from one cardiologist
was delayed when he unsuccessfully suggested the Nursing Department sponsor this nursing project (this
information conveyed by his most helpful research nurse). At another hospital, the Ethic Committee approved
the project but named the supporting cardiologist as the Principal Investigator; only on appeal was my name
added as a co-investigator. Despite being assured this administrative expectation had no other significance, only
time dissipated doubts. In the end, all cardiologists supported the project throughout its duration without
expecting any changes in its control, processes and findings. Finally, one Committee expected an oral
presentation in support of the written application.
(i): Survey questions derived from the literature, clinical practice. Draft questionnaires were peer reviewed then
trialed by 5 volunteers with personal knowledge of living with an ICD (but ineligible for the survey).
(ii): Preparation for doing phenomenological research: Max van Manen's workshop (Victoria, Jan. 1995).
At the University of Technology Sydney (UTS), with two expert nurse researchers as supervisors.
Enrolled as doctoral student
Designing the research
Developed research design:
(i) a State-wide survey,
(ii) phenomenological study
Multiple copies: proposal
Rationale / Outcome
Doctoral scholarship granted by the Cooperative Research Centre for Cardiac Technology (Sydney).
AUDIT TRAIL
Application for funding
Action
1996
Accessing patients
Each cardiologist notified
eligible patients about the
research. Staggered survey
mail-out (a/c to receipt of
patient details). ~20 people
responded about the
interview. Issues included:
1996
Conversational interviews
Consent form, explanation
sheet mailed 1 week prior to
meeting at patient's home.
Field notes made after each
meeting
(iii) Interview group.
(ii) Reducing recognition by
health care workers
(i) Respondents' keen desire
to share their experiences
Ethics approval obtained
from each hospital and
UTS
Action
1995: to
Date
Rationale / Outcome
269
(ii): Strategies to minimise respondents' possible recognition explained (eg coding and using aggregated data in
the presentation and discussion of research findings).
(iii): Decision: include men, women, who lived in the city/country, who encountered problems/no problems,
who were young/old, who were employed/unemployed, retired, various post-ICD experiences, received their
ICD at different hospitals. Others who expressed interest were thanked for their help thus far.
With all participants, warm and friendly welcome, with some initial introductory social chat. The first two
couples in rural Victoria were surprised I would drive the several hundred kilometres in order to better
understand their particular situation. Participants described ICD-related events according to their meanings,
implications, or related events or situations, but seldom in a chronological order. Their descriptions revealed
subjective aspects (eg., sensations, thoughts, feelings, actions, expressions), objective understanding of the ICD
and some reflective insights about their understanding of living with an ICD.
After waiting an hour beyond the appointed time, I had 2 minutes to outline the research to the 10 anonymous
panel members. Their 3 simple questions, easily answered by telephone or letter, did not justify the 3 hours
drive or related costs.
Over a period of four months each Ethics Committee granted approval for the project.
Of 108 patients contacted, 89 consented for the release of their name and address to receive a questionnaire.
Receipt of this information took four to six weeks. One cardiology department charged a fee for this service.
Of 108 patients contacted, 89 consented for the release of their name and address to receive a questionnaire.
Receipt of this information took four to six weeks. One cardiology department charged a fee for this service.
Package mail-out occurred within one day of receipt of each list, but with most patients having no contact with
others, this probably did not impact on the results. Reminders to non-respondents were mailed three weeks later.
Returned questionnaires were checked for completeness, with data collated on computerised spreadsheets.
Respondents were forwarded a letter of appreciation, and if needed, requests for missing data. No mail was
posted in the week before or after Christmas. The last page of the questionnaire invited contact from
respondents interested in a future interview.
(i): Many callers just wanted to briefly talk about their experiences. With their permission, brief notes recorded
our conversation. Surprisingly few wanted medical or nursing advice. Many asked about a support group, and
noted the need for health care workers to know more about ICDs;
AUDIT TRAIL
July
July
July
July
May
April
1996
April
Date
(iv) Mr and Mrs D
- partner's rescue of patient
- value of ICD's security
(v) Mrs E
- EPS; symptoms; home; work
(vi) Mr and Mrs F
- patient's information needs
- partner's felt responsibility
(vii) Mr and Mrs G
-patient's reluctance to accept
ICD
• Interviews
(i) Mr and Mrs A
- need to retain autonomy
- importance of home
- repaying society for ICD
- partner isolation
(ii) Mr and Mrs B
- adverse events → wanting
ICD out: impact on family
(iii) Mr and Mrs C
-unplanned dyadic interview
- pt's need occasional risks
- teenager presence
Action
Rationale / Outcome
270
Mr and Mrs G: For the partner, the ever-present memory of finding their spouse collapsed, and how this shapes
their view of their situation. The patient's fears of how the ICD will interfere with a desired death, and
dilemmas between perceived responsibility toward others and self.
Mrs E: Re-encountering near death during the EPS; importance of home in recovery; the need for some risks;
experiencing ongoing vague symptoms (& menopause); family's reluctance to discuss the patient's situation.
Mr and Mrs F: Importance of self-set goals, amidst confusing or misleading medical information; the partner's
responsibility and need for information; shared determination to move forward.
Mr and Mrs B: Revealed differences in patient's & partner's experience living with an ICD; the ICD's negative
impact; the patient's expert knowledge of their body, hatred of the ICD & desire for its removal; the partner's
sense of responsibility; pre- and post-implantation support needs & after adverse events.
Mr and Mrs C: Original plan: separate conversations to understand specific patient / partner experiences.
Dyadic conversation with this & 2 other couples (Mr & Mrs D; Mr & Mrs F) provided interesting contrasts. Mr &
Mrs C also invited their teenage daughter to join us (→ on-the-spot assessment: did she know about the study?
Was her consent informed? Yes: her parents had discussed the project & she read the explanatory sheets).
Insights into the child's experiences + her parents' sense of responsibility toward others
Mr and Mrs D: The ambivalence of rescuing the patient; the partner's importance for the patient's recovery; the
patient's own explanation of arrhythmia causality; ongoing health problems in the first 12 months.
Mr and Mrs A: Mr A wanted direct questions, rather than telling their story; also refused to sign the consent
form because he distrusted bureaucratic details; provided verbal consent; positive account of living with a
pectoral ICD, with minimal device discomfort. The broad interview guide provided prompts for open-ended
questions. Mrs A was very softly spoken, so hand written notes supplemented gaps in recorded conversations.
She indicated her need for more information, and the isolation of not knowing others in her situation.
AUDIT TRAIL
1996
July
1996
1996
August
Date
AUDIT TRAIL
Rationale / Outcome
271
"We try to come to terms with our assumptions, not in order to forget them again, but rather to hold them deliberately at
bay ... thereby exposing its shallow or concealing character "(van Manen 1990, p.47).
Reflections on the experience This has been a fascinating & a personally enriching period. We're so privileged to be welcomed into the world of others &
hear sometimes incredibly intimate and powerful stories of their experiences. ... [Emerging ideas include] how they have
of the interviews (extract
from personal journal, 12.8.96) made sense of their experiences (ie their own explanations vis-a-vis those offered by medical staff), the importance of home
for how they view their past/present/future & how this device has been incorporated within their sense of self -- including
the language used when referring to it. Most patients see it as a 'friend', an inseparable part of themselves. However, two
patients ... either refer to it as the 'box', or 'thing', with one man (who received multiple shocks whilst conscious) yearning
for its removal. Context is so important in making sense of their experience: most descriptions are layered with various
meanings and subsequent experiences. Interestingly, ... there are also snippets of ... more 'immediate' experience (e.g.,
when they recall their initial collapse / the first time they were shocked / or a similarly powerful moment).There is no way I
could ask any of these participants to try to lay aside the various ways in which they have come to understand their
experiences re their ICD. It is such an emotionally heavy subject. Yet, I'm surprised at the frankness of their accounts, eg.
Partners vividly recalling how they found their spouse in an arrested state, their appearance, subsequent actions. In what I
thought was a particularly poignant comment, one man said put such images to the back of his mind, but they never quite
get there.
Paper presented at UTS
Contrasted qualitative & phenomenological interviewing; examined practical, methodological and ethical issues
phenomenological interviews
of phenomenological inquiry; discussed situational decision-making for resolving related issues.
Methodological issues
(i): Bracketing / critical reflectivity: Researchers indicate the need, following Husserl, to adopt the
phenomenological epoch?. Reminiscent of the positivistic desire (objective 'value-free' methods to attain certain
(i) Critical reflectivity in lieu
knowledge), this means bracketing the natural attitude (ie., ideas & prejudices about a particular phenomenon).
of bracketing.
This is apt for a first-person phenomenology (in which the participant as co-researcher does the
phenomenologising) (e.g., Crotty 1996; Hammond, Howarth & Keat 1991). In keeping with van Manen (1990),
participants in this research freely discussed their experiences, but did not undertake the phenomenological
tasks. As the researcher, critical reflectivity reviewed my impact on our relationships, their narratives and the
data analysis. The intent was not to bracket these perspectives but to better understand their place in this
research:
Action
(ii) Research of a sensitive
topic with vulnerable
participants.
1996
• Data transcription, storage
(iv) No participant
verification of my
descriptions, interpretations
of living with an ICD.
(iii) No verification of the
transcripts.
Action
Date
Rationale / Outcome
272
(ii): Vulnerable participants Phenomenological research by nurses often relies upon verbal or written
descriptions of how others encounter a phenomenon. In his critique of this model, Crotty (1996) believes that
those offering the accounts should undertake the phenomenologising, including bracketing, reflecting, intuiting
and describing. In this research, it was deemed ethically inappropriate to ask vulnerable participants to
phenomenologise upon the sensitive issues of living with an ICD. Their vulnerability was embedded in being
survivors, or partners of a survivor, of a life-threatening event. There was also the concern to avoid any felt
sense of obligation because of their receipt of a life-saving technology.
(iii): No verification of transcripts Participants were offered a copy of their transcript to keep & to also have
specific comments. Neither of the two couples who received a transcript requested any change. Participants
were not asked to verify the transcripts. Their accounts were frozen to the time, context and nature of our
meeting; their re-reading would be a re-interpretation outside the context of a meeting & could give rise to the
need for further clarification (Nagy, S. 1995, pers. Comm., May 5). No participant accepted the offer a second
interview and only one patient requested a summary of the findings.
(iv): No verification of the phenomenological description and interpretation: With the exception of the Chapter
4 summary of individual experiences, the presented findings resulted from an amalgamation of insights from
across all texts and, with a nursing and philosophical intent, examined for what they reveal about the
phenomenon. Besides the difficulty of discovering their story in this amalgam, the focus of the analysis is not so
much everyday uninterpreted or questioned experience, but rather the phenomenon of living with an ICD. Any
request for their validation may well result in disappointment and possibly negative responses (Ashworth
1993). Conversely, they might offer strongly positive responses as a way of pleasing the research (Ashworth
1993) as a way of reciprocating a chance to share their story with an interested listener.
Each tape was transcribed verbatim into a specifically coded computer file. Original tapes and printed
transcripts were stored in a locked filing cabinet, separate from identifying material. Working copies of
transcripts included relevant field note comments. Filed according to codes (e.g. Mr A) facilitated easy retrieval
of either computerised or printed data. Line numbering facilitated cross-referencing of transcripts.
AUDIT TRAIL
1996:
from
April
Date
2. Condense, refine similar
statements (validate with
reference to texts); note links
or relationships; collate into
meaningful structure.
(ii) Collective experience
1. Re-read each transcript
twice as a whole; identify
specific comments; make
summative marginal notes;
collate list of statements.
Repeat for each text. Hence, 2
lists (patients / partners).
Goal: Describe living with an
ICD as experienced by
patients and partners
(i)Describe the individual
Summarise each person's
experience, issues, meaning;
describe changes, context &
timing of situations.
• DATA ANALYSIS
Action
Rationale / Outcome
273
(i): Description: Individual experiences Beginning with an analysis of each patient's experience, the transcript
was twice read as a whole to enhance familiarity & grasp the timing and sequence of specific events, incidents
or issues. Tape of interview replayed to note any subtle or unspoken meanings. The resulting written summary
introduced each participant (and their voice), their personal context, demographic data (from the survey),
experience of living with an ICD and its meaning. This initial description was open to further refinement, as
insights grew with later reviews of the transcripts. Notations of beginning puzzles, ambiguities, emergent ideas
recorded in personal journal.
(ii): Collective lived experience: Thematic Analysis (description, some interpretation): Thematic analysis using
the 'selective reading' approach advocated by van Manen (1990, p. 93) and a concentrated, intuitive process.
Studied the collective lived experience of the ICD as represented in being a patient and being a partner. Close
examination of each section of text combined emergent analysis with a broad form of coding. It identified with a
highlighter pen significant words, phrases, metaphors & sentences reflecting a specific aspect of living with an
ICD (experiential aspect) or its meaning. A brief summative statement in the adjacent margin used participant's
words, if possible, to name the experiential aspect or meaning. It also noted cross-references to similar statements
in this and other texts, or apparent ambiguities or puzzles. The resultant list of statements for each transcript was
then reviewed more thoroughly to ensure the contextual meaning or significance of emerging patterns, issues,
meanings or concerns (see the following example). All lists were collated into a cumulative list of patient and
partner statements (see samples in Appendix E). A cyclical to-and-fro dialogue between the list and individual
transcripts progressively condensed the summative statements, refining and validating their content, and
allowing the data to speak. It was a case, of "trying hard not to code according to some pre-fixed label, but rather
allowing the data to dictate the label. In a sense, there is both a reduction and a reconstruction" (Personal journal:
15.7.97). This progression elicited the beginning structure to understanding the collective lived experience of
being a patient or being a partner.
Despite the appearance of a linear process, the analysis cyclically returned to all the texts. It was an iterative
process of describing individual experience, collective lived experience; interpreting the phenomenon.
(NB: As evident in the dates, this was a protracted process, with unforeseen personal circumstances at different
times interrupting and even putting on hold the progress of the data analysis & interpretation).
AUDIT TRAIL
1997 -
Date
Thematic analysis involved
intense concentration,
flexibility, being open to new
insights and the need to
refine emerging conclusions.
The ongoing questioning
dialogue with the data often
refined tentative conclusions.
It culminated in the affirming
sense of having written an
authentic, credible and
comprehensive description of
being a patient.
3. Write, re-write themes;
clarify (in, across texts); use
essential themes to structure
detailed description; support
with exemplars, excerpts &
literature descriptions.
Action
Rationale / Outcome
274
Cross-reference with
-patient's desire to regain independence (& be allowed to take some risks) (see also Mr A; Mrs E; Mr F).
- patient's desire not to be seen as different by others (see also Mr B 'has a beer with his mates'; Mrs G: 'keeping up
appearances' of being well & refusing to take sick days from her job).
Mr C: Oh, there's a lot of people can't handle [...] the fact that....why are you doing that, because you might kill yourself, you know. But
I just look on it, like it's no good me sitting on the couch there until I'm 80. I've always been somebody who's been out and about and
worked for myself (Lines 1347- 1369; also Lines 143-144).
• Reconciling responsibility for others with the personal need to take some risks:
Mr C: They understand the machine is going to do the work [if I collapse], that they don't have to do anything (Line 432-433;605)
• Trust in the ICD & time without problems bring a sense of complacency for others;
[Review: Jan. 8 1997]
Context: Feeling a reciprocal sense of responsibility, Mr & Mrs C used various public forums to educate locals about the ICD
and its protection. The passing of time without incident and increased understanding eased other people's concerns (Lines
412-417).
Mr C
The most frustrating thing - not so much about the defibrillator - but for the whole heart problems in general, is people too
frightened to let you do something ... They're frightened to let me do something lest I have a heart attack or something
SR
And what do they say?
Mr C
They say "Oh no, I'll lift that, I'll do that", and
Mrs C They don't invite him to certain things, like working bees, get-togethers, have a game of golf or anything that might be physical,
in case it brings on a heart attack. ... He's collapsed a few times with the defibrillator in, not with me around, in the town. And that
hasn't helped either, because something like that happens, and it reverberates through the town
Mr C:
Everybody knows. (Lines 137-157).
• Meaning of living with an ICD embedded in reciprocal concern between self & community [Rev.: Jan. 8 1997]
Context: Mr C. had CA in main street; since having the ICD has collapsed in public twice (once in a shop/once at a public
meeting) but quickly recovered after being shocked. In a small community, the public visibility of his life-threatening
situation incurred an onerous responsibility for community friends & colleagues: What if it happens again & they are the
only ones present? For the first 12-24 months people treated him with kid gloves. Although frustrating, Mr C understood
their concern and tried to reduce its intensity:
Example of beginning analysis: Contextualising, condensing and understanding an experiential aspect
AUDIT TRAIL
1997 -
Date
AUDIT TRAIL
Rationale / Outcome
* surviving,
* existing, adapting to the ICD
* reconstructing life
Being a patient
Initial understanding
suggested the patient's
experience thematically
represented an existence of
Example, beginning analysis:
This example (dated 08.01.97)
reflects beginning analysis of
the raw data. The example
teases out ways in which the
ICD conveys meanings for
the self and others. In
addition to context, it notes
the line reference, and
possible cross-references.
reveal this process.
• DATA ANALYSIS
275
Accepting ambivalence & uncertainty; recapturing one's sense of self; the restorative importance of being home; need to set
own goals, take some risks, assert independence (use of various strategies eg., hope, humour, resilience, knowledge); not
allow VAs or ICD to dominate life; the need to focus on QoL, not on its quantity or duration. Regain a sense of control &
choice in life, construct own explanation of VAs (based on personal, social, work context). Resume usual activities, driving,
work. Reciprocal responsibility to family, friends, colleagues. Most patients appreciate ICD's contribution to extended
possibilities.
RECONSTRUCTING LIFE: Celebrating life with the ICD:
• Receiving ICD & returning home: initial wound discomfort (abdo device); short LOS in hospital; Minimal or ambiguous
pre-discharge advice (little guidance for resuming exercise, everyday activities, diet, driving). Surviving a key focus because
it takes time to trust the ICD & its reliability (Is it working? Will it be affected by metal fatigue?). Resumption of activities
without adverse events affirms its reliability, as does the first, single ICD shock. Such a shock has a split second impact &
brings reassurance that the "device works". Most patients integrate the ICD as part of the self, a trusted 'friend'. Other
patients reveal a non-embodiment: the ICD is always 'present' in awareness; retains the quality of being an object of awe and
fear (power of its multiple shocks OR its potential interference with a desired death).
• Returning home: Uncertainty of marking time in the pre-ICD wait; little professional guidance; precarious struggle
(vulnerability & limited foreseeable possibilities). Fearing the invisible problem of arrhythmias→ hypervigilance (monitoring
the body); preparing the body & self for the unfamiliar ICD.
EXISTING, ADAPTING TO THE ICD: Re-establishing control, accommodating the ICD
• Collapse: Surviving but living on the edge; feeling out of control: physical, emotional and existential losses: confrontation
with own mortality; feeling lost in unfamiliar world of medical technology; heart becomes the 'object' of scrutiny, by others &
by self; being overwhelmed by events / need for information
• Experiencing the EPS: re-living nearness of death; 'Failing the EPS' = lost control, being 'programmed'
SURVIVING: Striving to survive a threatened and disrupted existence
(cont.) Being a patient: beginning themes
(developed from list of patients' experiential aspects & meanings: see Appendix E: Working documents)
The following examples
Action
1997 -
Date
Clarification & refinement of
each theme derived from the
dialogical questioning:
- Do these themes accurately,
adequately and authentically
reflect the messages in the
text?
- Do they capture the
meaning of being a patient?
- How does each theme relate
to other themes & the
collective lived experience?
- Is there disconfirming
evidence (negative instances)
or unexplained ambiguity or
incongruity — and thus the
need for a broader thematic
understanding?
Action
Rationale / Outcome
276
EXISTENTIAL DIMENSION
Theme: Living with an ICD is framed by living' on the edge' between life and death, with a tenous
sense of control framed by a reliance on a device which, to varying degrees ,is integrated within one's sense of self.
* Living 'on the edge'(the threat of sudden death/ loss of control/ embodiment of a powerful technology...
living on the 'brink'; having being 'thrown' into the world of medical technology by VAs / CA;; waiting, accepting
uncertainty (possible death) and moving forward ; 'celebrating living' - firmer ground: acceptance, moving forward
* Regaining a sense of control and choice: Out of control / loss of control @ collapse; EPS; Post-ICD insertion: control
shaped by dependence, reliance on ICD; Regaining control: shaped by acceptance of ICD & responsibility for own welfare;
communal belonging; being home;
* Integrating and embodying the ICD into one's sense of self; background awareness /subjectification of ICD: a 'trusted
friend', perceived as part of self; importance of QoL (c/f: 'distancing' of self from device: ICD remains as an 'object' - "the
box" (IN, but not PART of self); 'always present' in consciousness; continued loss of control due to the feared power of
ICD, either its capability for delivering multiple shocks, or its future role in preventing/intervening one's 'natural' death
* Being and existence:
Responsibility for self / for others
SEQUENTIAL DIMENSION
Theme: Living with an ICD is temporally framed by surviving, existing and celebrating living
* Surviving the threat posed by VAs; * Existing and 'marking time' while awaiting insertion of the ICD; * Celebrating
being alive by getting on with living
EXPERIENTIAL DIMENSION
Theme: The encountering, learning about and experiencing of the ICD shapes and is shaped by
one's understandings about the device, the nature of VAs, and the importance of home. This experiencing of the ICD is perceptually
'measured' against the extent to which there has been a return to a sense of 'normality' in everyday life.
* Encountering the device
Needing an ICD: (presenting with ventricular arrhythmias; having pre-ICD EPS)
Learning about the ICD: (awaiting ICD insertion)
'Presencing' of the ICD:( discomfort, being shocked, perception of the ICD & its reliability. body/sexual image)
* Regaining a sense of 'normality': Return to daily activities, work, driving, holiday travels
* Meanings associated with having an ICD: Constructing own understanding of VAs as a means of regaining control;
Perceiving the ICD: (Own /Others' views of the ICD : 'bionic' person / gendered connotations); The importance of home
Living with an ICD, for patients has experiential, sequential and existential dimensions
Answers to these questions revealed that these initial themes did not adequately reflect the experiential,
sequential and existential dimensions of being a patient. This awareness shifted the reflective focus toward
understanding the complex, changing reality and meaning of receiving and living with an ICD.
AUDIT TRAIL
1999 -
[Note:
Time out
of study]
1997 -
Date
AUDIT TRAIL
Rationale / Outcome
Personal ill-health and
sudden death of an
immediate family interrupted
this study for almost 18
months. Re-starting,
although difficult, brought
fresh awareness when rereading the transcripts,
reviewing the preceding
findings, and re-writing the
descriptive findings.
Final identified themes
included:
* Being disrupted
* Reconstructing life
* Appreciating and celebrating
life
* Accommodating the
technology
277
THEME:
Appreciating and celebrating life
Appreciating and celebrating life reflects the culmination of the recovery experience. It is a time for fulfilling various
obligations and making sense of the susceptible body within the context of one's life. The focus of existence shifts from
the ICD's presence to a life that derives its meaning from past experiences and current philosophies. The overriding
desire is to move forward in personally meaningful projects. For most patients, the ICD's proffered security and
confidence creates future possibilities.
Note: The theme of accommodating became the basis of examining the ICD-as-experienced. Meanings in these themes
included vulnerability, bodily awareness, control or choice, and perceiving the ICD as an implanted technology. These
themes and meanings structured the description, Being a Patient (Chap. 5).
THEME:
Reconstructing life
The experience of receiving the ICD and adapting to its presence and significance is a time of further considerable
change, with the recovery period varying according to the type of ICD. This period lasts approximately 12 months for
patients implanted with a large abdominal ICD generator and approximately 4 months with the smaller pectoral
device.
Reconstructing life consists of learning about and understanding the altered body and learning to trust the unknown
qualities of the ICD and its shock(s). Home provides the meaningful context to regain a sense of identity and cautiously
resume various activities. Taking the occasional risk extends perceived possibilities and provides much needed
confidence. The diminution of uncertainty and ambivalence underpin the restoration of a sense of normality, security
and control. Reconstructing life also means being responsible by protecting the self and others.
'Being Disrupted' denotes the occurrence, with little or no warning, of an episode of life-threatening cardiac
arrhythmias. It reflects the individual's loss of control over their heart and being and their transformation into being a
patient. Invasive medical procedures further expose their vulnerability. Fears, doubts and isolation mark the struggle to
survive. The offered ICD brings hope for a restored sense of security and normality. Despite the anxiety of a protracted
wait, the patient prepares the body and self to receive the ICD. Fortitude, determination and resoluteness sustain their
hope.
• DATA ANALYSIS (cont.) Being a patient
The result of the renewed reflective questioning and re-writing elicited a more comprehensive thematic grasp of the
Uncovering the dimensions
nuances and complexity inherent in being a patient.
extended understanding, but
still did not adequately reflect
Being a patient: Thematic structure
in depth the inherent
THEME:
Being disrupted
messages textual messages.
Action
1999 -
Date
Rationale / Outcome
Meanings:
Being Responsible (to monitor patient, monitor & support their recovery; support family; reciprocate
others' support; care for self; feeling proud of the other; get on with living)
Experiential aspects
• Pre-ICD: Coping during initial weeks; waiting for ICD; • Post-ICD responsibilities; spouse's return
home; living with the ICD affects all family; learning to trust the ICD; monitoring the other; motivating
others; supporting spouse & family; being a peace-keeper; maintaining own health; being an
information resource to others: • Longer term: recovering a sense of normality; surprised at being able
to forget the ICD; witnessing ICD shock(s); coping with ambivalence; pride at other's achievements;
coping with patient's dislike of ICD
Being a partner: beginning themes
(developed from list of patients' experiential aspects & meanings: see Appendix E: Working
documents)
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* Appreciating possibilities
278
Adjusting: Feeling overwhelmed & exhausted; needing information; 'holding the fort' (protecting the
family); learning to distance self from the impact of the situation;
Appreciating & Becoming more secure: Trusting ICD as that which keeps spouse alive;
Existential growth: Getting on with living; creating possibilities & personal meaning
Final themes
Being a partner:
Following
the same processes used to analyse the patient's experiences, thematic analysis of being a
The thematic structure of being a
partner
also
involved considerable revision, refinement and clarification.
partner was similar to the patient's,
Increased
understanding
evolved in and through the writing and re-writing of the description of the
yet made different by their embodied
partner's
lived
experience
(Chapter 6). This description was structured by the following themes:
vulnerability and perceived
responsibility.
* Being responsible
* Becoming more secure with the
patient's ICD
* Adjusting to enforced changes
(due to the patient's arrhythmia
predisposition)
Being a partner:
Initial analysis
In the period prior to 2000, the initial
analysis suggested the partner's
experience comprised an
overwhelming responsibility
associated with:
Action
Being a partner comprises:
1999 -
These themes and meanings
structured the detailed
written description of Being
a Partner (Chapter 6).
Accommodating the ICD: Being
protected
Appreciating and celebrating
life: moving on; and,
Reconstructing life: reclaiming
normality
Being disrupted and distressed
Action
Date
Rationale / Outcome
279
Accommodating the ICD metaphorically reflects its integration into the partner's life. This incorporates the affirmation of its
protective presence in its shocks. Being protected eases the partner's awesome responsibility. The patient's desire to discontinue the
ICD disconcertingly destroys this sense of security.
THEME: Accommodating the ICD: Being protected
The protective security afforded by the patient's ICD produces various possibilities for the patient, partner and their family. The
restored sense of normality and resumption of busy routines diminishes the partner's awareness of the ICD and the patient's
arrhythmic risks. This transformation makes it possible to value the present and, in appreciation of the ICD's presence, celebrate life
and make plans for a meaningful future.
THEME: Appreciating and celebrating life: moving on
Reconstructing life reflect the partner's reality when the patient returns home after ICD implantation. In contrast to the anticipated
respite and relief, awesome responsibility for the patient's safety and well-being dominates their existence. Unlike the patient, for the
partner, home is a place of considerable anxiety and insecurity. Time, together with trust and reliance in the ICD helps restore a
redefined sense of normality.
THEME: Reconstructing life: reclaiming normality
Being disrupted and distressed reflects the upheaval and changes associated with the partner's experience of the near loss of the
patient to a life-threatening arrhythmic event. This event transforms and marks their everyday reality with uncertainty and an
unforeseeable future. Additional doubt, insecurities and dread arise from being directly involved in the patient's rescue. Exhausting
hospital visits, family workloads, the paucity of professional support and a sense of isolation intensify the partner's distress. Hope
for some relief and respite resides in the promised security of the patient's ICD. Waiting for its implantation is an anxious and
apprehensive existence. It frames the emergence of the partner's perceived responsibility for the patient's well-being. In addition to
closely monitoring the patient who endures the wait at home, the partner struggles to make sense of the patient's arrhythmia
problems, the ICD and its anticipated impact.
THEME: Being disrupted and distressed
Being a partner: Final themes
AUDIT TRAIL
• The ICD-as-experienced
The third layer of analysis
interpretively explored how
the ICD, as an implanted
device, is perceived,
integrated, understood and
embodied.
1999 -
This analysis concluded that
the ICD is either embodied as
a protective friend, or
existentially rejected as an
intruder in the body and in
one's life.
Data included participants'
texts, related disciplinary
research and philosophical
literature.
This analysis involved a more
philosophically informed
hermeneutic interpretation.
Action
Date
Rationale / Outcome
280
Anticipating the ICD: Living on the edge and waiting
Being in awe of the ICD as stranger
Accepting, appreciating and connecting: The ICD as friend
Being occupied and controlled: The ICD as intruder
Comprehending the ICD: Worldly horizons
The ICD-as-experienced: Friend or Intruder?
As presented in Chapter Seven (outlined below), this interpretation explores and reflects on the perception,
immediate experience and existential significance of the ICD. It suggests that after being in awe of this device,
the patient either perceives, understands and embodies it as a protective and reliable friend, or existentially
rejects it as an intruder in the patient's body and life. Further, this embodied experience shapes and is shaped by
the individual's being-in-the-world, and in particular, their interactions with various ideologies and discourses
about technology as either life-saving or alienating.
Concepts that informed or emerged during this level of inquiry included physicality (of the ICD, the patient's
bodily awareness), vulnerability and uncertainty, control, choice, living with the risk of arrhythmias, normality,
power, transformations, tensions, ambiguities, needs, alienation, sense of death, possibilities, and processes of
coming to terms with and embodying the ICD.
Interpreting the phenomenon of the ICD-as-experienced:
Following the suggestions advocated by van Manen (1990), this analysis reviewed what the participants'
transcripts revealed about the temporal, spatial, relational & corporeal qualities of the ICD-as-experienced, that
is, as an implanted device in the body. The intent considered the various perceptions of the ICD's presence,
power and potential as a technology.
AUDIT TRAIL
Date
• Retrospective design and
recalled experience
A critique of this inquiry
identified three
methodological issues:
Methodological issues
Research significance
Research outcomes
supported and extend current
understanding of the
phenomenon of living with
an ICD. It also recommended
several improvements to
clinical practice, as well as
further exploration of several
issues to enrich this
understanding.
Action
Rationale / Outcome
281
The retrospective design of this research relied on participants' accounts of their recalled experience as data. None kept a
diary, so their descriptions were accepted as the fullest account possible, with no way of noting aspects of their experience
may have been overlooked. Yet, it was possible that time since ICD implantation, subsequent life events and my presence
(as nurse and partner) shaped the content of their accounts. On the other hand, each freely invited me to hear their story. For
many, it was the first chance to share it in detail with a health professional who had the time to listen. There was several
weeks notice between their invitation and my visit. Only one patient (Mrs E) prepared reminder notes of the events and
issues she wanted to discuss.
The retrospective design proved helpful in two ways. First, it fortuitously allowed comparison between the experience of an
abdominal and a pectoral device. Second, the inclusion of patients who received the ICD only a few months earlier as well
as those who received it more than four years earlier enabled a more comprehensive insight into the transitions that occur in
the experience over a period of years. Disclosure of such transitions are not possible in prospective studies that last six to
twelve months.
• The appointment of an ICD Case Manager
• The provision of an ICD-related Staff Education Program
• The provision of a Patient Education and Support Program
-An ICD Information Checklist
-An Information Resource Manual
-An ICD Support Group
-A Telephone Support Link
-ICD-Cardiac rehabilitation Program
• The provision of a Community Education Program
This understanding that evolved from this research extended current professional views about living with an
ICD, but further explorations are needed to assess its relevance for other contexts and more recent devices. In
addition to insights resulting from the analyses, recommendations for clinical practice integrated numerous
suggestions from participants for improved education and support resources for staff, patients and partners:
Recommendations:
AUDIT TRAIL
Date
AUDIT TRAIL
Rationale / Outcome
Contemporary phenomenology: Max van Manen (1990); Michael Crotty (1996)
This research in part extends the current debate about contemporary phenomenology by reviewing the potential
contribution of the ideas of Max van Manen (1990) and Michael Crotty (1996). In particular, it suggests the value
of van Manen's (1990) hermeneutic phenomenology for sensitively exploring health related phenomena with
vulnerable research participants in ways that offer practical insights, enrich understanding and more informed
practitioners and everyday practice.
• Contemporary
phenomenology
282
The decision to use van Manen's work was almost unquestioned early in this inquiry. Previous use provided a
valuable framework for exploring the phenomenon of prolonged vomiting and nausea after an acute myocardial
infarction and I was comfortable about its potential contribution for the current investigation. This assumption
was seriously challenged in late 1995 when I met Michael Crotty at a phenomenological workshop presented by
Max van Manen. Subsequent discussions, together with Crotty's text (1996), highlighted his criticisms of a new
form of phenomenology being practised by nurse researchers. He suggested this phenomenology, most notably
evident in North America, was heavily endowed with humanistic and psychological thought and thus
considerably different from more traditional European based phenomenology.
The reader is introduced early to my place as a beginning researcher-nurse-partner in the research origins,
design and processes. This allows them to critically assess whether the descriptions, interpretations and practiceoriented recommendations are adequately supported by the presented evidence. It also allows them to
understand how other researchers, informed by different perspectives and experiences, may elicit other
interpretations. As noted by van Manen (1990) no description and interpretation is final. Hence, other
contributions are welcomed because they extend and enrich understanding.
• The self as researcher
Methodological issues cont.
• Retaining unique, within
The phenomenological descriptions of the phenomenon of living with an ICD tried to retain uniquely individual
the collective understanding
insights through an account of each participant's individual experience (Chapter 4) and, where practically
possible, use of their voice through the inclusion of numerous transcript excerpts.
Action
Date
• Contemporary
phenomenology
(cont.)
Action
Rationale / Outcome
283
This more traditional phenomenology rarely features in nursing examples of phenomenological inquiry. Of
relevance to the current project, it suggested a possible means for understanding how the individual
immediately experiences the ICD as an implanted biomedical technology.
Crotty (1996) similarly acknowledges the value of such social science type of inquiry, but argues it is not
traditional phenomenology it studies inherited or acquired meanings. It does not examine how a given
phenomenon is immediately experienced, prior to being interpreted. Phenomenology, he suggests, is not so
much interested in the sense made of things (the experience) but the things being made sense of. In this context,
the term 'phenomenon' refers to the object or thing being experienced and interpreted. This reflects the
connection (or concept of 'intentionality') between pre-reflective immediate experience, and the object of that
experience. As a philosophical mode of inquiry, phenomenology seeks to explicate and describe immediate, prereflected experience of a phenomenon. Indirectly, it critiques and exposes the ideological forces that layer and
frame everyday understanding.
First, Crotty's (1996) critique highlighted the need to distinguish between the concepts of 'experience' — or, as
van Manen (1990) suggests, 'lived experience' — and 'phenomenon'. 'Experience' is understood as the day-today responses, reactions, interpretations and the everyday sense people make of things or phenomena, such as
living with an ICD. Awareness of the everyday experience of various health and illness phenomena is essential
for nurses and other clinicians. Understanding the related cultural and social meanings, including those arising
through engagement with the health care system, is vitally important for improving the conduct of clinical
practice.
Further, as he explained, this philosophical divergence had significant and seldom acknowledged research
implications. During our discussions, Crotty praised the examples of van Manen's research as being richly
phenomenological, but questioned the methods articulated in van Manen's text (1990). My discussion of Crotty's
critique with academic peers at UTS in early 1996 (March 15) resulted in a more critical consideration of his and
van Manen's ideas in relation to exploring the phenomenon of living with an ICD.
AUDIT TRAIL
Date
• Contemporary
phenomenology
(cont.)
Action
Rationale / Outcome
284
Instead, this inquiry followed the van Manen's (1990) advice, namely to borrow experiential descriptions offered
by patients and partners and then to reflectively and thematically analyse what these descriptions revealed about
living with an ICD. This research was thus not a traditional phenomenological inquiry as advocated by Crotty
(1996). Rather, as later discussed among peers (at UTS, Dec. 1999), it was informed by Dilthey's (1900) and van
Manen's (1990) approach to human science (see Chapter 3.3.1, 3.3.3.i). Its interpretive element also drew on the
related philosophy of Merleau-Ponty (1962).
Third, notwithstanding its potential value, Crotty's (1996) methods for conducting a traditional phenomenology
incurred particular concerns for exploring the phenomenon of living with an ICD. Clearly, the persons with the
most knowledge of this phenomenon were patients and their partners. Yet, having already endured the trauma
of life-threatening situations, they were considered to be vulnerable research participants. In addition, this
phenomenon was identified as sensitive research issue because related recollections could resurface traumatic
memories. It thus seemed ethically inappropriate to expect vulnerable participants, who had no involvement in
developing this inquiry and who might derive little direct benefit, to undertake the concerted concentration, time
and effort required in a first-person phenomenologising.
Second, Crotty's (1996) critique showed how traditional phenomenology incurs specific research responsibilities.
It shapes the research relationship with participants, the type of data obtained and who conducts the inquiry.
Instead of being the person who collects and analyses descriptive accounts (as suggested by van Manen, 1990),
the researcher adopting a traditional phenomenological inquiry acts as a guide to help participants, as coresearchers, to do a first-person phenomenologising. Research participants thus need to bracket their natural
attitude and, with intense concentration, intuit or recall and describe the immediate encounter of the
phenomenon. Instead of providing data to be analysed, participants provide phenomenological descriptions. The
researcher can, if they then want, reflect on and interpret the collected descriptions.
AUDIT TRAIL
Date
Rationale / Outcome
Audit Trail Documents
Documentary evidence
supporting this Audit Trail
record
285
- working documents, progressive findings (data reduction, summaries, analytic categorisation) (Appendix D)
- interview guides (Appendix C), audiotapes, transcripts, field notes (Appendix C); and personal journal
(reflections and methodological notes)
E. Professional implications: Research outcomes compared with current literature to assess their practical,
theoretical and future research significance.
→ [practice recommendations; future research]
-research proposals to 6 ethics committees; written ethics approval; written communications about the research
(Appendix A); preconceptions before the research (Appendix B);
D. Uncovering the UNKNOWN: Exploring the phenomenon of living with an ICD (ICD-as-experienced).
Processes here included reviewing what the data revealed about how the ICD's presence, power & potential
manifests to the patient; reviewing the literature for other accounts of the phenomenon & of related phenomena
(ie., vary the example being studied); interpreting the evolving understanding within the context of the
philosophical literature (phenomenology, existential thought, philosophy of technology) and within the health
care context as experienced by the research participants. → [interpretation of the ICD-as-lived]
C. Uncovering the UNKNOWN: Exploring collective lived experience of the ICD: through thematic analysis
reveal the nature and meaning (literal [surface] + implied [noncognitive] meaning); dialogue with the data;
(Movement: part/whole or the collective lived experience).
→ [description of Being a patient, a partner]
B. UNKNOWN: Exploring individual experiences of the ICD: (The current research)
Using conversational interview with patients / partners to explore what it is like to live with an ICD (Questions
asked of their data: What is the immediate & later bodily experience of the ICD? What is its impact on
everyday life? How is the ICD attributed meaning? How does its presence shape other personal & social
meanings? What is the experience of being shocked?
→
[description individual experiences]
Evolution of insights and
A. UNKNOWN: The outcomes of Victorian ICD program (Survey: data on patient demographics, ie., age,
understanding of living with gender, reason for & type of ICD, post-ICD shocks, activities, driving, work, QoL, subsequent attendance at
an ICD
health care facilities; recommendation of ICD to others
→
[description: Victorian patient
outcomes]
Action
AUDIT TRAIL
286
Appendix E:
1.
Working documents: Progressive findings
Patients: Aspects of experience, Meanings
Mr A
• Cardioverted in EMD: awoke, feeling of being in another dimension
• Having an EPS:
Felt the shock used to revert the induced arrhythmia
• Learning about ICD: Main source of information = cardiologist, ICD booklet
- Concerned at that ICD would be inserted within 5 days
• First few days with an ICD: No discomfort; hardly aware of its presence
- Post-ICD Advice: not allowed to do weld; resumed driving in 2 weeks
• Expressed autonomy: "Nobody manipulates me" (Line 899): refused to sign consent form
- requested a pectoral device (less at risk from his farming activities);
- reluctant to relinquish roles (no longer welds, but supervises others who do his welding )
• Importance of home in quality of life (ICD peripheral to the meaning of his farm)
• Developed own explanation of arrhythmias
- Doctors' view: electrical dysfunction due to calcification of myocardial tissue (Past AMI)
- Patient's view: electrolyte disturbance due to renal dysfunction; cumulative stress
• Positive view of the ICD
- "an amazing piece of machinery" (Lines 259-260); "marvellous piece of machinery"
- thankful he has this ambulance inside & monitoring him, but like other machinery, it is costly
& susceptible to wear & tear problems (? metal fatigue)
- ICD allows his continued hard work (& thus repay the social debt of its cost)
- futility of worrying: no control over life or death (Despite ICD, death will still occur)
- sound knowledge of the ICD; of his body & how far to push it;
- ICD Checks - 3 monthly: 8 hour round trip for a visit that lasts ~5-10 minutes
• First ICD shock: Felt VA, lay down, LOC at time of shock; felt OK & resumed work
• Having an ICD = " non-event"; like a body extension (e.g. reliable watch); recommend it
MEANING of living with an ICD = protection, inbuilt ambulance; marvellous piece of
machinery expected to be as effective and efficient; allows continuation of productive activities;
despite its presence, death will occur at its destined time
Mr B
• Long history of living with VAs: thus, able to cope with his symptoms;
- ICD offered b/c drug tolerance increased frequency, severity of his VT
- Likes to be kept informed about his body & medical treatments
• Wants to be treated as a normal bloke: a beer with mates; shares limited information
• ICD implantation: long in-hospital wait (change of drugs; pre-existing infection)
- surgery took several hours & pt experienced considerable wound related pain
- positive recovery next 3-4 months; early retirement (hazardous workplace; poor general
health); kept busy with chores & young family's care
• Multiple shocks & their associated distress destroyed initial confidence in ICD
- Conscious (wife & children present); screamed at the pain; fear of imminent death; sense of
powerlessness; severe emotional distress (no post-shock counselling)
- shocks continued in the EMD: staff knew little about the ICD & so lacked the knowledge &
skills to intervene; waited for telephoned advice from cardiologist
287
Appendix E:
1.
Mr B:
(cont.)
Patients' aspects of experience, meanings
(cont)
• Wants ICD removed: dread of shocks-> Fears, anxiety, severe panic attacks, depression
- hates the device: Its presence, power, potential dominates awareness; fears diminish QoL,
affects family relationships; unlike his VT, no sense of control
Meaning of living with an ICD: The ICD not a source of reassurance or confidence; but
something over which he has no control; its presence haunts him & he dreads future shocks;
hesitates to do activities that might result in another shock.
Mr C
• Learning about ICD: Shown a model; received enough info about the device's functions
• Time becomes precious: important to keep active and busy
- despite failing health, take the occasional risk (others do not understand: protective)
• Driving: necessary for his independence, existence; any ban would mean moving house
- had ICD reprogrammed (to reduce risk of LOC while driving)
• Time without problems leads to a sense of complacency (for self & others)
• ICD incorporated into the sense of self
- Similar to false teeth, artificial limb etc., ICD is integrated into the self
Meaning of living with an ICD: the ICD = a reassurance, insurance policy; minimal discomfort;
allowed him time to see his daughter grow up. Time diminished awareness of ICD & its
incorporation as a body extension, like false teeth or an artificial limb (Lines 1520-1521).
Mrs D
• Long history of AF: (despite multiple treatments):Dr stopped all drugs 3/52 pre-arrest
• CA at home (found by husband who started CPR & rang ambulance); vague memories
• Experiencing an EPS
- hated the experience; realised what would happen if doctors could not revert the VA
- described the catheter laboratory as a "chamber of horrors"
- doctors used the term "failing the EPS": for her it also meant a loss of control over her heart &
that which is at the core of her being
- ongoing problems with medication side-effects in the months preceding ICD implantation
- sapped of energy: she believed life would be a case of just existing
- returned to P/T work few weeks pre-ICD: insecurity of being away from her bodyguard
• Surprised by large size of ICD
- much bigger than doctor's explanation of it being 'little device'
- a male nurse provided most related information about living with ICD
• 1st ICD shock: (in hospital; ICD not fully programmed): surprise, shock , wound pain
• Return home: minimal pre-discharge advice
- being able to exercise some choice again (chose fish & chips + salt); initially very tired
- set recovery goals ->Motivated to increase daily exercise, activities; drove within weeks
- returned to P/T work 3/12 later; reassured colleagues re their fears about another CA
• Becoming less aware of the ICD
-Time without problems diminished awareness of ICD & reclaimed sense of normality
(Use of the ICD tester [check ICD's functions] ceased: ?constant reminder of ICD & VA)
• 2nd shock: VF Collapse in shower: quick recovery, but now unable to deny VA risk
Meaning of living with an ICD: Values ICD as security: a "friend"
288
Appendix E:
1.
Patients' aspects of experience, meanings
(cont)
Mrs E
• Hospitalised with AMI complicated by several cardiac arrests
- took some time to realise seriousness of her situation;
- Slow recovery, complicated by symptoms from low blood pressure
• Experiencing an EPS
- EPS = a "horrible", "barbaric" experience, invoked memories of previous CAs ("You're killing
me!"). Questioned why pts have to be conscious
(contrasts with EPS years later when an anaesthetic by contrast, was not distressing )
• Learning about & waiting for ICD (implanted 5 months after CA): trying to stay positive
- Experienced difficulty absorbing information offered about the ICD & her medications:
- felt overwhelmed by her previous AMI/CA; never heard of ICD; frightening time
- cardiologist said she would be dead within 18 months without the ICD (Lines 124-127).
• Post-op ICD experiences
- Despite pre-op education, still surprised at size of ICD; little pre-discharge advice
- home = insecurity + ICD's unknown potential (after being "molly-coddled" in hospital)
- considerable abdominal discomfort from ICD: unable to sleep on stomach for at least 18/12
- still gets recurrent backache (~ each 4 months & lasting for a few days)
- back ache worse if ICD presses against the rib cage or moves within pocket
• Recovery: meant learning to read her body to distinguish the origins of any symptoms
- experienced numerous other vague symptoms, many similar to those reported in the cardiac
literature; had difficulty in getting doctors to take the symptoms seriously; later diagnosed
to be menopausal; hormone replacement therapy eased symptoms
-Learning which doctor does what: GP (menopause); cardiologist (ICD)
-The importance of home as a grounding place, even if it is some distance from a hospital
(after her AMI & ICD, enforced re-location into the city would "have killed" her)
• Returning to 'normal' involves being philosophical & positive
-" you do your best, you fight your hardest, but...what will be will be" (Lines 1546-1547);
-Regaining independence: ie., family quickly resuming their usual jobs; being allowed to take
some risks (Line 712) being able to drive; re-employment (self-esteem, self-worth,
confidence, being "useful"; being advised not to tell future employers about the ICD)
-regained sense of normality / diminishing awareness of the ICD takes patient by surprise
• Caring about others who care: being responsible to not unduly alarm family & friends
• The first ICD shock: no warning; quick & sudden; no LOC, no pain; reassurance that the
device works (Lines 111-113); felt OK afterwards: sat down, then resumed activities
• Press reports about faulty devices: nagging concerns (eased by cardiologist's reassurance)
• People's perceptions of ICD: other people unaware of ICD; refer to pt as a "bionic woman"
-men's curiosity about her ICD reflects sexual overtones & innuendoes
• Making sense of the ICD in terms of the body
-Resumption of sexual relations an initial worry; eventually resume normal relations
-Gradually feeling stronger since ICD insertion; regular device checks are now seen as ordinary
& thus seldom discussed within the family
-each birthday celebrated as an extension of life BUT also a reminder of time running out
-denies that living with an ICD is living with a chronic illness
• Meaning of living with an ICD is a process of adapting, of learning to live with the 'machine
in your body" - "[it's] really been good" - it becomes viewed as a friend; greater appreciation of
living, ignoring trivial issues & recognising personal strengths
289
Appendix E:
1.
Patients' aspects of experience, meanings
(cont)
Mr F
• Patient constructs own historically grounded explanations of their arrhythmia origins
-pre-ICD had been aware of an increase in his heart rate each night on going to bed.
-previously monitored evidence of brief episodes of VAs (not treated)
-gets quicker EMD treatment if arrives by ambulance rather than private car
• In EMD had cardiac arrest in presence of wife: such pain on regaining conscious that he
thought he was dying; it was meant to be that he got to hospital before his collapse;
• Learning about the ICD: never heard of it before; received inaccurate, misleading &
disconcerting information that resulted in false expectations. Difficulty in getting access
to accurate information; explanations helped by access to written literature, diagrams/
white board by doctor & an actual model of the ICD
• Interactions with health care staff shaped his expectations
- being a patient for 3 weeks resulted in a 'mentality' where he wondered if he was 'losing his
faculties'; continual evaluative / orientation questions imply there might be some future
deterioration of one's mental status; importance of having a doctor who instils confidence
and a feeling of being safe
• ICD implantation: Less pain than expected; return home: a few days later celebrated by the
family: "it was good"; very tired initially (went to bed 2-3 times a day)
• Recovery: recognise & extend body's abilities & limits; set milestones & take occasional risk;
regain confidence; choose b/t optimistic / overly cautious medical views; make plans, but
accepting things may change quickly
• Explaining ICD: likens ICD to a pacemaker; others people's questions reflect media interest
in other forms of cardiac surgery & devices (little known of ICD)
Meaning of ICD: a necessary "modification to the body"; a reassuring friend that brings
confidence; integrated as part of his physical body (Lines 1418-1458; 1791-1795).
Mrs G
• Past history of myocardial scarring (early adult A-immune disease)
• CA at home: rescued by husband:- Prolonged ICU stay; multiple physical complications
- wanted to die: "being "pulled in half" by family pleading for her survival
• Experience of EPS: "awful", "horrible": felt as if doctor was killing her
• Reluctance to accept ICD: felt pressured (by family & by staff); few staff knew about ICDs;
manufacturer's booklet little guidance; cost of ICD could benefit more people
• ICD implantation: initial severe discomfort ( # rib & abdo wound); lung problems; ongoing
problems: Body image concerns (scars, evidence of ICD, altered clothing), nausea, loss
of voice; amenorrhoea & early menopause; chronic lung problems
• Being responsible for the self & getting on with living means
-being informed & if necessary using own resources to get information
-establishing benchmarks: literature evidence, doctors' comments (some misinformation)
-resuming driving (convincing doctors to allow her to drive again)
-returning to work (initially to her stressful job; later, a more satisfying job): helps repay
perceived debt for care received; important for self esteem
• Making sense
-of each doctor's role: unable to get answers to questions (doctor does not know about ICD, or
refuses to answer (eg ["box" doctor) (Lines 1223-1225;1449-1458)
- VAs: doctor's explanation = physiological (myocardial scarring >conduction defect )
personal explanation = excess stress (work & personal life) -> body's vulnerability
• Being shocked: (nervous anticipation of first shock)
-First (& only) ICD shock: not as bad as expected. As with CA, much stress in her life.
• Recovery is a process of "going around corners"; each phase is less of a struggle
290
Appendix E:
1.
Mrs G
(cont.)
Patients' aspects of experience, meanings
(cont)
• Meaning of having an ICD (the 'box'): Ambivalence of putting others' need for security
before her personal goal, but now hates ICD: she feels programmed, with an unromantic &
ugly body; believes ICD will interfere through multiple shocks when it is her time to die (a
"ghastly" thought, especially given her severe lung problems). Sudden death would be a
welcome release; having made her peace, she anticipates death as a transition to something
better. Family resents her decision not to replace ICD when current battery is depleted.
................................
EMERGING FINDINGS — Features of the patient's lived experience:
Presenting with life-threatening ventricular arrhythmias; having EPS
Learning about & waiting for & period around ICD implantation (discomfort);
Post-ICD Activities: exercises, driving, work: returning to normal; meaning of home
Perception of ICD: (device, reliability, faults, ICD shock: presence, power, potential)
Constructing own explanation of VAs, susceptibility
Responsibility for others (noting their views of the ICD) & for self; being different
INITIAL MEANINGS — Beginning thematic notions:
• Disrupted rhythms: VAs = "Being arrested": disrupted lives; vulnerability; being thrown into
the world of medical technology by VAs / CA; abbreviated futures...
- Making the decision to have the ICD (little choice) & waiting (living on the edge)
• Uncertainty fractures the sense of self (ground in the threat of sudden death)
- VAs = an encumbrance: disturbs the body's sense of integrity; results in it being the object of
scrutiny from others; loss or control;
- EPS = relinquished control; trusting the Dr. yet their induction of VAs again puts the patient
into a near-death situation;
- ICD = varied sense of control a/c perception of device
- Recovery = re-gaining control (taking responsibility, creating choices, achieving self-set
goals, return to work, driving. Accepting some uncertainty as the norm
• Perceiving & making sense of the ICD: tangible presence; intangible connection
- learning to live with an ICD: getting information about its functions, anticipated impact
(limited resources); learning through personal trial & error situations
- perception of ICD's physicality as object: a/c to generator size -> internal discomfort, external
bulge, shocks - coping with various symptoms
- perception of ICD's power & potential -> unknown, unpredictable (little or no pre-shock
warning), doubts about reliability (mostly invisible functions), fear about its present
(shock) & future capabilities (extend life / interfere with death)
- Learning to trust the ICD: influenced by time since implantation, ICD-related experiences &
the changing meaning accorded the ICD
• Learning about & making sense of the body-with-ICD (limited professional help)
- learning how to stay well (follow medical regimen re medications /ICD; getting fit; regular
exercise & rest; learning to live with anxiety)
- learning to cope with enforced changes (using denial as a coping technique); learning to
again trust one's body; striving to reclaim a sense of independence
- making sense of the reactions of other people (treated as invalid vs seeing self as not ill)
291
Appendix E:
1.
Patients' aspects of experience, meanings
(cont)
INITIAL MEANINGS & Beginning thematic notions: (cont)
• Ambivalence /Ambiguity / Paradoxes: A tenuous trust
- Entrusting technology; tensions/ trust (Monitoring self being monitored by machine);
- how do people perceive technology? (Some believe more technology is best; others see
technology as surveillance, monitoring, control, invasion of private life, more risk etc)
• Tensions:
- Living with risk of VAs, sudden death, dependence on a unknown & unfamiliar implanted
device, yet striving to be seen as normal or at least not different to others
Hence: work hard; avoid disclosing ICD to new work colleagues (avoids risk of being
stigmatised as different); try to keep up appearances if unwell and deny living with an
ICD is living with chronic illness (c/f literature views of living with an ICD)
- 'celebrating living' - firmer ground: acceptance,
• Isolation
- keeping concerns to self to protect others; no chance to validate experience with other pts
- few h/care workers knowing about ICDs & no designated resource person
• Existentials
* Centrality of existence (presence of ICD, especially when it remains at the forefront of
awareness & its role as 'protector', brings vulnerability into vision. As perception of ICD
changes to one of 'distancing' & backgrounding, vulnerability also become less defined.
Never quite disappearing, it hovers in the background, ever ready to again make itself the
centre of one's existence.
* Death
- VAs = unpredictable premature death (prevented by ICD); destined death despite ICD
* Life - re-evaluation of life priorities: what will be, will be
- diminishing time to get some order in their live & develop a future orientation
- ICD is not something which is time dependent; rather it's usually a life-long process
* Authenticity
- Loss of 'self' to others (being swept along in process of multiple investigations etc)
- Making own decisions
* Corporeality, the body
- Understanding the meaning of bodily symptoms; strangeness, alienation, & loss of taken-forgranted familiarity, comfort of one's body; altered self-image; the 'strange' body;
reclaiming 'my' body (after ICD is integrated into sense of self
* Responsibility & Relationality - lived relations (to self, family, community, ICD)
- caring about how partners & others affected by situation; to their ICD
- 'social debt' obligation - perceived need to give something back to society for care / ICD
* Spatiality
- the body as an 'unsafe' place (loss of familiarity, loss of security, loss of ambience)
- being 'thrown' into the unfamiliarity of the hospital (with VAs)
- the body-with-ICD main focus of attention; changed body 'space' (ICD encroaching)
- 'coming home': home as a 'safe' place, 're-connection' (representations of pre-ICD self)
- regardless of geographical location of home, home offers needed sense of stability, security,
strength, a place to be themselves
* Temporality
- fate: being in the 'right' time & place to be found when they collapsed ("a fluke")
- time standing still (onset of VAs); fractured time & futures ('prolonged' time while waiting for
ICD - "marking time"); ICD implantation as 'buying time'
- time as measured by which their recovery progress; significance of birthdays (living extra
time, but also a sense of time running out)
- meaning of living with an ICD merges present with past & future
292
Appendix E:
1.
Patients' aspects of experience, meanings
(cont)
POSSIBLE FRAMEWORKS FOR DESCRIPTIONS / INTERPRETATIONS
• Chronological nature of situation
(eg.: 'surviving', 'existing', 'celebrating living')
• Lived Transitions / transformation:
- Begins with event of VAs, decision to have ICD insertion (was there a choice?) - Mystery of
ICD's presence, power, & potential connectedness, integration, embodiment
- 'physicality': physical awareness of having the ICD; body boundary (with ICD intrusion);
dependence on a machine (machine could monitor them, but they could not monitor the
ICD); 'disconnected' (continuity & connection vs separation, independence); 'control'
(control own boundary, making the connection, embodied mind/body)abates as it
becomes embodied (unknown to known)
* Embodiment of implanted device
- background awareness /subjectification of ICD = a 'trusted friend', part of self
- resumption of fulfilling life - QoL is most important
* Inability to embody ICD
- ICD remains as an 'object' - "the box" (IN, not PART of self); always present' in one's
consciousness: an everyday shadow
- continued loss of control (feared power of ICD, either its multiple shocks, or its future role in
preventing/intervening one's death)
- Embodiment <---> yet-to-be-embodied (or? Never embodied) device
- Medico-nursing discourses surrounding ICD & the body, technology;
Symbolism (of technology): ICD as symbol of power, control;
- Existentialist dimensions of living with implanted life-saving technology (metallic object of
ICD) compared with organ transplant (living object); existential loss: (lost future, choices)
c/f. existential growth (over time)
ICD as 'friend' or as 'foe' / 'intruder'?
Connection <--> disconnection, rejection
- Relating to the world in & through the ICD
( SELF > ICD >
- Relating to the ICD in & through being-in-the-world
(SELF >WORLD > ICD)
293
WORLD)
Appendix E:
2.
Working documents:
Progressive findings
Partners: Aspects of Experience, Meanings
Mrs A
• Minimal information re ICD
-At time of husband's ICD insertion, she stayed on farm & could not get information about ICD
from doctors or nurses at the implanting hospital.
-After coming home, Mr A said little about the device, but gave her the manufacturer's book,
saying: "You've got to read this"
- Months later, she wants more information, especially on what to do if he collapsed in her
presence (ie: being responsible by being prepared); the experiences of other
patients/partners (what is normal?); if other patients have similar mood swings post-ICD;
number of patients with an ICD in Victoria
- She seldom sees his doctors & no contact with his cardiologist
• Initial understanding likened ICD to pacemaker; idea of a shock was "scary"
- Reading the manufacturer's booklet: thought ICD was like a permanent pacemaker (she knew
people with a PPM), but ICD's ability to shock was "...scary..."
• Concerns related to husband's VAs / ICD
- if he is late in returning from working on the property
- if touching his pectoral skin area over ICD generator (afraid lest she set something off)
- about his sleeping patterns: listens to his breathing, & gives a jab if he has a long pause
- Wary of what happens if ICD delivers a shock; unsure about her role
• Perceptions of ICD: Ambivalent: reassured, but much remains unknown to ICD
- ICD is a marvellous thing; offers reassurance if further collapses occur
- Still some doubts about what if? Knows little about the device & its immediate effects
Meaning of being a partner (Mrs A)
Responsibility for the other; uncertainty & lack of
information; isolation (unable to talk with other partners); ICD brings both reassurance &
shared responsibility, but because it remains unknown to her, she remains wary of it.
Mrs B
• Husband's bouts of VT seldom troubled him or her
-Mr B's problem with intermittent VT present for years; seldom compromised him
-Rarely did he lose consciousness, but when he did Mrs B found it scary & frightening
• Learning about ICD
-not heard of ICD before; initially likened it to an implanted pacemaker
-Relieved it would allow him to stop Amiodarone (& its damage to his body)
• Being a partner at the time of ICD insertion: exhausting, fulfil multiple roles
-She travelled back & forth for hospital visits ~ 4 hour trip
-Maintained her household & care of young children at same time
-Didn't realise how hard it was until reviewed in hindsight
• Pre-op preparation important: partners need to be included
-Partners need explanations re: ICD, insertion process, post-op care (Mrs B Lines 272-273)
-Length of operation was worrying: kept herself busy to take her mind off things
-Forewarned of his appearance, she was not scared or shocked when she first saw him
• Patient's return home immediately post-ICD insertion
-Unknown future: only advice was the ICD booklet; no advice about driving
-His home-coming = relief: family was re-united & life started to get back to normal
• First 12 months: prolonged period of illness: (no light at the end of the tunnel)
- Wondering if things will ever get better
- Strongly advocates value of vitamin supplements to boost immune system
294
Appendix E:
2. Partners' Aspects of experience, meanings (cont)
Mrs B (cont)
• Witnessing spouse receiving multiple shocks: Helplessness, fear, distress (in presence of their
young children in the middle of town)
- "Really horrific", frightening, worrying time: all thought he was dying
- Feelings of helplessness & powerless exacerbated by: Being unprepared; didn't know of the
possibility of multiple shocks; Not knowing what she could do; Local hospital staff not
knowing how to stop shocks; Seeing/hearing her husband's distress; time taken by staff to
sedate him; Lack of explanations, answers, reassurance
• Coping with long-term consequences from multiple ICD shocks: uncertainty, fear, anxiety
-learning to distinguish VAs from fear-induced anxiety or panic attack
-learning with confidence the signs and symptoms indicative of panic attacks & not VT
-using own inner strength to avoid "panicking about anything unless it happens
-Learning /teaching strategies to reduce frequency, duration & severity of his panic attacks
-Managing own fears, gaining confidence, gaining inner strength
• Supporting children through father's multiple shock crisis
-Explain; listen to children's concerns/fears; involve support figures;
-Although asking older children to restrain their behaviours, also aware of their additional
burden of caring for younger siblings during a crisis.
• Being a partner is... perceived responsibility for
(a) Balancing spouse's, children's & own needs presence, support
-Mediating as peacekeeper between husband & teenage children
-Specific needs of young children whose parent has an ICD
-Providing explanations, answering questions, special time with them
(b) Ensuring life goes on: restoring a sense of normality
-Acting as normal as possible, including usual heated family debates
-Spouse's set-backs, "you can't let them..." give up without a fight; use various tactics
(c) Meeting own needs
-Who supports partners (husband, family, father, friend & home environs)
-Need to share/discuss experiences with one who "knows what you are going through..."
• Paradox: when the spouse wants his ICD removed/not replaced (He dreads further shocks,
resents loss of perceived control in his life, & wants ICD removed)
-She hopes he never again experiences the pain/distress of multiple ICD shocks
-Accepts that for him & his QoL, he would be better without the ICD
-But, she knows the medical reasons why he should keep the ICD (reduces incidence VT strain
on heart, offers protection against uncertainty of his VT) & even if possible, doubts she
could deactivate the ICD, just in case of an arrhythmia
Meaning of being a partner Uncertainty, ambivalence, responsibility for the other, &
isolation: Means learning the significance of their spouse's symptoms, and with minimal
professional support, coping with the ambivalence and uncertainty of their spouse's situation,
and everyday needs of the family. Who supports the partner?
Mrs C
• Partner as information resource for others
- Partner addresses other people's concerns about spouse's VAs, ICD, ICD shock:
Because they don't want to keep on hassling him ... they'll say, "Gee that was frightening. It
must be hard for you. Don't you worry?" and, "What should you do?"... "I didn't know what
to do. What should I have done?
• The first 12 months: A time of ongoing hospital admissions for spouse
295
Appendix E:
2. Partners' Aspects of experience, meanings (cont)
Mrs C (cont)
• Limited access to medical information/support about patient's condition
-If medical complications arise / patient hospitalised, little access to information:
-Patient main source of information, but drugs, stress distort their understanding
• Learning how to use the health care system
-Support from visitors, & local GPs (mediate information between spouse/cardiologist)
• Distancing the self from spouse's body changes / symptoms (ambivalent self protection)
-For patient, every symptom = VA/ ICD/heart problem; partner seeks alternative origins eg.
'getting older' (provides a space or 'distance' between serious cardiac problems)
-Distancing however brings guilt: b/c patient complains about lack of sympathy
-spouse complains they receive inadequate support or sympathy
•
Living with an ICD affects whole household: additional partner responsibilities
-Partner becomes a peace-keeper: avoid upsetting spouse, hides her feelings, stress
-Accepts spouse's welfare depends on / shapes her health
-finds alternative activities/venues where she can let off steam
- Recognises need to minimise impact of situation on their children
- Children aware that their parent with an ICD may face serious future health events
• Being a partner in private & in public spaces: Responsibility for others' welfare
(a) As lived in the private home space
- Family emotions & frustrations kept behind closed doors; present united face to others
(b) As lived in public and community spaces
- Their town is a special place ("You have time to stop, think where you are, and where you're
at..." [Lines 2308-2309]), shared sense of community, caring for each other...
- Locals worry about their responsibility for pt & exclude him from community events
- Partner listens to concerns & provides information/reassurance to others
-In return, a reciprocal sense of communal support: other people look out for & discreetly
monitor patient; they contact her if he is not looking well. She appreciates "the value of
[having] ...someone other than me [...] keeping an eye on him" (Mrs C: Lines 406-407).
Meaning of being a partner: Responsibility for the other (pt, family, community) & self;
Ambivalence (despite worry & concern need to let pt take risks); ICD = protection, insurance
policy: a "...back-up there even when the doctors aren't" (Lines 1876-1877).
Mr D
• Resuscitating one's spouse: ultimate responsibility for other
-Alone at time of patient's cardiac arrest; initiated resuscitation
-Reflecting on experiencing of resuscitating your spouse:
Exhilaration & excitement at the power of having beaten death;
Doubts: was it the right thing? (long-term brain damage?) (Lines 79-85; 98-122)
• Partner as "bodyguard"
-Patient views partner as her "bodyguard" (thus felt safe when he was around)
-Partner's concerns if pt ventures out on their own (eg., returns to work)
-ICD eases this concerns "... fortunately we don't have to worry about [her being all right] now"
[since ICD inserted] (Lines 370-372).
• Value of ICD: because antiarrhythmic drugs had not prevented her CA, it as a necessary
protection, one which "...gives you the authority..." to get on with life.
Meaning of being a partner:
Responsibility to protect & be a "bodyguard" for the other;
however, accept the value of the ICD in easing this responsibility; appreciating the importance
of getting on with living & how the ICD gives the authority for this
296
Appendix E:
2. Partners' Aspects of experience, meanings (cont)
[ Partner of Mrs E did not participate in project ]
Mrs F
• Witnessing spouse's CA
-With pt in Emergency Dept. & saw his monitor tracing go to a straight line, knew he was
dying. Witnessed initial resuscitation procedures
-Valued competence & support of emergency staff (hugged by nurse; given phone access)
• Crisis period: Supporting patient; supporting self; being supported
-Partner lives on "their adrenaline" after patient's CA, during medical investigations, the wait
for ICD, & the exhaustion of travelling, answering phone calls
-Recognises own health needs, including diet supplements (Mrs F: lines 1123-1130)
-Recognises how others nurture her inner strength: "you feel something, apart from the
verbal, that somehow they've got faith in you" (Mrs F: Lines 1695-1708)
-Filters information to family to minimally disturb their lives (Mrs F: Lines 576-584)
-First few months are very tiring, especially if coping alone
• Patient's collapse: Responsibility to get affairs in order (more aware own mortality)
• Learning of the patient's need for an ICD: seeking extra information
-Initially, they were "quite aghast" @ size of the large abdo ICD. How could it fit?
-Extra advice from (i) nurses (ii) implanting surgeon (especially about size of ICD)
-Found visual instructions more easily remembered when one is emotionally stressed
• Patient's return home post-ICD: an event worth recording on camera
-Spouse remained in hospital until ICD was inserted
-Spouse's home coming: a recorded family celebration taken (Mrs F: Lines 904-905)
• Being responsible requires adequate information to support & monitor the other
-Partners also needs to be informed about VAs / ICDs / medications
-No designated person to answer ICD-related questions (Mrs F: Lines 449-458); learned about
adverse reactions/situations by reading brochures or asked nursing friends
-Incorrect medical advice about patient's activities (eg., "We were told ... by the registrar he
would never drive again ... I discovered that was not true (Lines 945-952)
-Recognising how the comments of others can trigger self-doubts
• Regaining own confidence by supporting the other's resumption of activities
-Re-gain confidence (Lines 1248-1259) & encourage patient's resumption of activities by
allowing patient to start a range of activities, even if frequent rests are needed discreetly
monitoring, avoid being overprotective, accept the need for some risks: "We've got to keep
going" (Mrs F: Lines 1762-1769); "The worst thing is sitting around: you've got to start
being part of life again " (Mrs F: Lines 934-939).
-Being proud of the patient's post-ICD achievements & efforts to get on with living
• Isolation: Unmet desire to discuss, validate own experiences
-Supporting others, but experiencing a sense of isolation, loneliness & need to validate
experiences (Lines 1777-1783)
• Concern: difficult-to-access area increases vulnerability of home (Lines 1977-1995)
• Responsibilities when explaining the ICD to others: filters information: "There's so much to
know ... " (Lines 1497-1499); Others can't understand myocardial scarring as origin of VAs
(Mrs F: lines 1511-1524); ICD likened to a pacemaker or monitor
-Having a "bionic husband" (Lines 1470); ICD = NASA spin off (Mrs F: Lines 1443-1448)
• An emerging but fragile complacency: Being surprised when days pass without thinking of
the ICD/spouse's collapse; Being able to forget the ICD sneaks up & surprises partner; this
complacency easily broken if pt unwell or overly tired (Lines 1302-1313)
Meaning of being a partner: Overwhelming sense of responsibility for the well-being of the
other, and of the duty to live a positive and satisfying life. Being responsible requires having
sufficient information to enable discreet monitoring for early signs of problems, offering
appropriate support, making future plans, protecting own well-being, and providing accurate
filtered information to family.
297
Appendix E:
2. Partners' Aspects of experience, meanings (cont)
Mr G
• Being a partner means being responsible for the other: Onerous responsibility shaped by
memories of rescuing pt @ time of their CA + her resuscitation & protracted recovery
(a) Protecting the other
-eg. Stayed at her ICD bedside; checked expertise of staff; convince pt of need for the ICD
-Helping with pt's physical care & pain relief in early post-discharge period
-Later in her recovery: escorting pt to/from work; reminding her of hazards to her ICD
-Planning driving routes a/c to location of nearest hospital, in case something happens
(b) Living with the worry of another cardiac arrest
-Despite her ICD, he can't forget CA & is on "tenterhooks", worrying about her welfare
-Any events, such as ICD shock, vividly remind him of saving her life
• Isolation of a (male) partner: Not having a shoulder to cry on; confidante hard to find
• Getting back to normal: Does a level of comfort ever return?
Patient's desire to refuse ICD replacement uncomfortably topic exposes his vulnerability.
Meaning of being a partner: The ICD is viewed as a lifesaver, something which eases his
awesome sense of responsibility for pt's the life. He does not share her negative perceptions of
the ICD (to do with body image effects, & its unwelcomed and undignified intrusion into her
future death). Rather, he sees it as a "remedial" physical treatment (not unlike a denture)
which offers them both some safety.
................................
BEING A PARTNER: Issues, aspects
Witnessing spousal CA / participating in spouse's resuscitation
Difficulty in obtaining accurate information about ICD
Being a partner means worrying about your spouse
Who supports the partner?
Being an information resource for others
The entry of the ICD into family life
Resumption of work after spouse received ICD
Witnessing the delivery of an ICD shock
Perception of the ICD through the partner's experience
Meaning of space, place and time in context of ICD COLLECTIVE MEANING OF BEING A PARTNER
The major theme related to the partner's perceived responsibility for their spouse's recovery,
well-being, and future. It was grounded in their spouse's survival from a life-threatening
situation, and threats of a recurrence. Worry for their spouse accepted as normal but they tried
to keep it hidden. The partner's existence focused on protecting their spouse, at least for the
first 6-12 months after ICD implantation, even if it was hard to see any light at the end of the
tunnel from the pt's physical problems
Despite their fears and anxieties, partners recognised pt's need for independence & encouraged
their resumption of various activities. Being responsible meant learning about VAs, ICD, signs
of problems, a task made more difficult because of limited access to information or resource
person. Knowledge deficiencies exacerbated partner' fears.
Partners also kept the family together during crisis periods. Multiple roles were exhausting.
Distancing was a self-protective strategy but sometimes brought an added sense of guilt. It
was an ambivalent existence of trying to maintain a sense of normality within a continuum of
uncertainty. Years later, ambivalence, uncertainty, and vulnerability remained present. their
awareness. Aside from ICD shocks, the pt's decision to cease the ICD exposed the partner's
sense of vulnerability but not yet discussed with counsellors or doctors.
298
Appendix E
3.
Working documents:
Progressive findings
Participants' Recommendations for Practice Improvements
•
Better preparation for living with the ICD and associated symptoms
- need to make a more informed decision when consenting to ICD (Mrs B)
- more information about pt's capabilities, ICD's functions, the nature of ICD's shock, possibility
of more than one shock (& not necessarily a sign of imminent death) (Mrs B)
- help middle aged women distinguish cardiac from menopausal symptoms (Mrs E; Mrs G)
- advise patients re explanations for co-workers re: ICDs, arrhythmias (Mrs D; Mrs E)
- need to exude an air of confidence and trust (Mr F) when giving ICD-related information
- need an opportunity to see a video of the implantation procedures (Mr A)
- need for better support after adverse events, such as multiple shocks (Mrs B)
- need for counsellors familiar with what it means to live with the ICD (Mrs B)
• Timing of information sharing
- need to help patients and partners resolve initial concerns about arrhythmias and their
significance, before giving education about the ICD (Mrs E; Mrs F)
• Need to address the personal and emotional aspects of having an ICD
Mrs B: I mean they should think it's not just a person and this device is going to do wonders for their
life. ... it will. But, there is also the down side, the emotional side, and I think that's what they need
to look at as well. Not just that they have done this great thing, that they've created this new
chance for people, and I mean, that truly is wonderful..., but you've got to look at the person, and
the after-effects
• Improving communications between patient and health team personnel
- doctors, nurses to avoid ambiguous or conflicting advice or messages (Mr F) about patient's
everyday activities (Mr F), driving (Mr F; Mrs G), & re prognosis (Mr F; Mrs G)
• Need for a designated resource person to
- provide additional information about...
living with an ICD (Mrs B)
anticipated duration of the patient's recovery (Mr D)
prognosis and management of significant symptoms (Mrs F; Mrs G)
reliability of ICD and its leads (Mr A; Mr B; Mr F)
specific care when visiting the dentist (Mrs D)
validate significance of patient and partner experiences (all participants)
- ensure partner receives accurate advice about patient and their ICD (Mrs C)
- disseminate information about the ICD to
ambulance personnel (Mrs B); staff in regional & rural hospitals (Mrs B)
local doctors (Mrs D; Mrs E); social workers involved in giving patient advice (Mrs B)
- support rural patients (Mrs B)
- overcome patient's sense of being different (Mr B; Mrs F)
- overcome partner's sense of isolation (Mrs A; Mrs B; Mrs C; Mrs F; Mr G).
- assist with counselling after adverse events (Mrs B)
- advice for overseas travel (destinations, insurance, health problems, medication (Mr F)
- facilitate frank, open and informed discussion about cessation of ICD therapy
• Creating a register of volunteer patients, to
- liaise with new recipients (similar age and problems) (Mrs B)
- share experiences and information (Mrs B; Mr F), especially
• Having health care workers nurture personal strengths of patients and partners (Mrs E)
• Discounted mobile phone costs for approximately 12 months post-ICD insertion (Mr F)
299
Appendix F:
ICD Information Checklist
Aims
Provide consistent, accurate, relevant & timely information and support
Timing
When the patient is considered as potential candidate for an ICD
Used during patients' hospitalisation; continued for 12 months
Process
Assess patient learning needs; clarify comprehension;
Use plain language, with diagrams, ICD model, Information Manual
Staff to sign form after each session of instruction
Storage
Original returned to ICD Case Manager; patient to receive a copy
Information Content needed by patients
• Recovery from arrhythmia onset
Physiology of ventricular arrhythmias; nature of investigations such as EPS.
Explain about hospital stay, various procedures & their results
Explore individual concerns; offer counselling; introduce ICD Case Manager
Possible introduction to patients with an ICD
If the patient discharged pre-ICD insertion: managing arrhythmic symptoms
If the patient remains in hospital until ICD insertion:
Introduce the ICD, its functions, cost-effectiveness (to appease concerns about cost)
Explain ICD's shock capabilities (including risk of more than one shock)
Explain cost-effectiveness of ICD (to ease concerns about the ICD's expense)
Perioperative preparation (written instructions and video)
Pre-operative preparations, anticipated discomfort, physiotherapy
Explain anticipated recovery progress: positive, but realistic reassurance
• Advice about post-discharge support
Reassurance about anticipated future quality of life and survival
Encourage participation in ongoing education and support
Access to ICD Case Manager, Support Group, Telephone Support, other patients
ICD Rehabilitation program
Other resources: ? newsletter; internet links
Notify local emergency services of patient's receipt of ICD
Identification bracelet or necklet with ICD type and medications
• Initial advice about living with an ICD (Pre-discharge + reinforce in follow-up) Anticipated
recovery patterns (from 4-12 months, depending on type of ICD)
Reassurance about ICD's functions; need for Outpatient ICD checks - take copy of Checklist
Post-discharge instructions: wound care, medications, temperature checks
Protecting the ICD, avoiding environmental hazards
Regaining confidence & optimism
Symptom recognition, management and minimisation
- pain, fatigue, anxiety, fears & insecurity; managing prolonged palpitations
- coping strategies
Being shocked: note pre-shock symptoms, activities to reduce future incidence
- plan of action for single shock / for multiple shocks
Resumption of daily activities: realistic, positive goals & plan
Driving restrictions or precautions; exercise; diet; sexual activities; work
Mobile telephone precautions
• Subsequent lifestyles with the ICD
Returning to work: notifying employers, colleagues; ensuring safe workplace
Potential concerns: self-esteem, body image, sexuality, menopause (women)
Other medical treatment and the ICD
Holidays: insurance, contingency plans, ICD facilities, medications
300
Appendix F:
ICD Information Checklist (cont.)
Information content needed by partners
(In addition to above information provided to patients)
Initial explanations
Discuss the patient's arrhythmia, related investigations and treatment options
Explain the ICD and its likely impact on the patient's recovery
Advice about the patient's level of exercise and everyday activities
Explain the patient's anticipated emotions, symptoms and recovery pattern,
Explain the nature of ICD shocks and the care needed by the patient
Discuss the partner's reactions, concerns and needs
Provide access to the ICD Case Manager and invite participation in follow-up programs
Pre- and Post-discharge explanations
Encourage contact with other partners
Explain how information needs change with time
Offer frank discussions about sexual activities
Discuss alternative support whenever partner is ill
Explore the partner's experiences
- Offer appropriate counselling if psychosocial distress
- Offer strategies for maximising a sense of personal control & independence
Encourage discussion about the ICD and end-of-life situations
Encourage continued contact with staff and with other partners
(Sources: Brannon & Johnson 1992; Burke 1996; Dougherty 1997; Knight et al. 1997; Kuiper &
Nyamathi 1991; Moser, Crawford & Thomas 1993; Ocampo 2000; Vitale & Funk 1995; Thomas
& Moser 1993)
301
Appendix G: Glossary of Technical Terms
Abdominal ICD
Positioning of ICD generator in sub-phrenic abdominal
muscular pocket; common with early larger models
Ablation therapy
Medical procedure: uses heat therapy to destroy localised
cardiac tissue identified (mapped) as the origin of a specific
arrhythmia; thus, reduce arrhythmic risk
Acute myocardial
infarction (AMI)
A heart attack: damaged heart muscle due to the blockage of
a coronary artery
Atrial fibrillation (AF)
Irregular atrial arrhythmia
Antitachycardic pacing
(ATP)
Therapeutic option in ICD; brief bursts of rapid or overdrive
pacing to revert ventricular tachycardia, thus preventing
need for shock therapy; less discomfort
Arrhythmia
Abnormal heart rhythm
Atria
Heart's two upper chambers
Bradycardia
Slow heart rate of 60 or fewer beats per minute; treated with
artificial pacemaker if patient is symptomatic
Coronary artery bypass
graft (CABG)
Surgical treatment to bypass a stenosed or narrowed
coronary artery
Cardiac arrest
Cessation of effective heartbeat leading to irreversible brain
damage and death
Constrictive pericarditis
Potentially fatal fibrosis of pericardium (sac surrounding the
heart); associated with chronic inflammation or infection of
epicardial patches used in early ICD models
Coronary angiography
Diagnostic procedure in which injected dye outlines the
patency of the coronary arteries
CRC-CT
Cooperative Research Centre for Cardiac Technology
Sydney
Deactivation of ICD
Cessation of the ICD's sensing mode, rendering device
unable to detect arrhythmias or deliver treatment; may be
intentional (to cease treatment) or accidental (due to faulty
lead or electromagnetic interference)
Defibrillating ICD
shocks
Maximum energy ICD shocks of 25-30 joules to revert
ventricular fibrillation; patient may be still be conscious at
the time of the shock(s)
Defibrillation threshold
The level of joules (energy) of an ICD shock required to
revert ventricular fibrillation (VF); increasing thresholds
(with heart failure or medication side-effects) diminish
effectiveness of ICD shocks and predispose patient to
sudden cardiac death
Defibrillator
Machine that delivers programmed electrical current to
revert arrhythmias
Dual-chamber pacing
Permanent pacemaker mode that treats sustained
bradycardia by stimulating a sequential heart beat in the
atria and ventricles;
ECG
Electrocardiograph, or graphic picture of the heart beat
302
Appendix G: Glossary of Technical Terms
(cont)
Ejection fraction (EF)
Measure of effectiveness of the heart's left ventricle; an EF of
<30% indicates severe heart failure
Electrophysiological
study (EPS)
Procedure using programmed electrical stimulation or
pacing to evaluate the heart's arrhythmic susceptibility
Epicardial patches
Defibrillating electrodes in early ICDs; sewn on to heart's
outer surface, like internal paddles to deliver a shock
Exercise testing
Procedure to assess if exercise induces myocardial ischaemia
or arrhythmias
Implantable cardioverter
defibrillator (ICD)
Surgically implanted device that continuously monitors the
heart and reverts detected arrhythmias through
antitachycardic pacing or internal shocks
ICU
Intensive care unit
Lead fracture
A break in an ICD sensing or defibrillating lead; may result
in inappropriate shocks, or failure to detect arrhythmias.
Lead migration
Penetration of ICD lead into adjacent body tissues; causes
localised tissue damage, or ICD malfunction
Left ventricular resection Surgical repair of a ventricular aneurysm, a bulge in the
ventricular muscular wall
Myocardial ischaemia
Reduced blood supply to the heart muscle predisposing to
angina and cardiac arrhythmias
Pectoral ICD
Positioning of ICD generator in a pectoral muscular pocket
Permanent pacemaker
Implanted device that maintains a normal heart rate in
persons at risk of slow heart rates (bradycardia).
Premature generator
depletion
Unexpected depletion of stored energy of battery of the ICD
generator; necessitates urgent replacement of generator
Prophylactic ICD
Use of ICD as a preventative therapy in patients at risk of a
future life-threatening cardiac arrhythmia
Refractory arrhythmias
Arrhythmias resistant to antiarrhythmic therapies
Sudden cardiac death
Unexpected death within an hour of either arrhythmia or
infarction symptoms
Syncope
Sudden loss of consciousness
Tachycardia
Fast heart rate of 100 or more beats per minute
Thoracotomy
Surgical incision of chest cavity
Thrombus
Blood clot; may form on the end of ICD leads.
Transvenous lead
systems
Recent mode of positioning ICD leads through a vein;
avoids need for a thoracotomy
Ventricular arrhythmia
(VA)
Abnormal heart rhythm in ventricles lower heart chambers
Ventricular fibrillation
(VF)
Rapid, chaotic heart rhythm that ceases effective cardiac
output; fatal unless reverted in less than four minutes
Ventricular tachycardia
(VT)
Tachycardia of 100-250 beats per minute originating in the
ventricles; rapidly depletes cardiac output; risk of
ventricular fibrillation and sudden cardiac death.
303
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