BMJ 2014;348:g3699 doi: 10.1136/bmj.g3699 (Published 6 June 2014)
Page 1 of 2
Editorials
EDITORIALS
Why is talking about dying such a challenge?
Much more needs to be done to encourage the conversation
1
Kirsty Boyd consultant in palliative medicine , Scott A Murray St Columba’s Hospice chair of primary
2
palliative care
Royal Infirmary of Edinburgh, Edinburgh, UK; 2Primary Palliative Care Research Group, Medical School, University of Edinburgh, Edinburgh EH8
9AG, UK
1
In May, Stephen Sutton died at the age of 19 years from bowel
cancer. His love of life and extensive fundraising showed
everyone how to live life to the full, even when dying. Death
is universal. But most patients and doctors still struggle to deal
with the challenges posed by deteriorating health and thinking
about dying. How and where people die depends not only on
their disease but on their circumstances, options, choices,
expectations, values, and beliefs. Open, early discussions about
what matters when people are dying are vital if we are to act on
the growing list of policies, good practice guidance, and
recommendations.
A recent survey of 2055 British adults commissioned by the
health promoting palliative care organisation “Dying Matters”
found that about half of those with a partner knew about their
partner’s end of life wishes. Just 6% had written down their
own preferences despite sustained campaigns to encourage
public and professional engagement in advance care planning.
A parallel study found some improvement in the proportion of
GPs who had initiated a conversation with patients about end
of life care (75% in 2014 v 65% in 2012).1 The timing of these
discussions was not reported, but a Scottish primary care study
found that patients with cancer or other advanced illnesses were
being identified for a palliative care approach only in the last
weeks of life. Fewer than one in five patients with organ failure,
dementia, or frailty were on practice palliative care registers
when they died. This was because of problems with knowing
whom to identify and how to raise the subject of “palliative”
care.2
The results of these studies mirror outcomes of advance care
planning initiatives in other healthcare systems, where some
people embraced opportunities to think and plan ahead while
others preferred a “day to day” approach to living well with
advanced illnesses.3 This is particularly true of patients with
multiple advanced conditions or non-cancer illnesses, such as
chronic obstructive pulmonary disease.4
However, even in cancer care, where death is an acknowledged
reality, chemotherapy is commonly offered in the last months
of life and is associated with an increased risk of the patient
having a medicalised, death in hospital.5 By contrast, early
palliative care that facilitated a gradual shift in prognostic
awareness led to improved quality of life and even prolonged
survival in patients with lung cancer.6
The situation in secondary care is similarly problematic, as
shown by an audit of 149 hospitals in England by the Royal
College of Physicians. Although hospital staff recognised most
of those patients entering the last days of life, documented
discussions, particularly with patients, about impending death
and treatments such as clinically assisted hydration and nutrition
seemed to be lacking in many cases.7 Many factors contribute
to this state of affairs, including a focus on investigations and
treatment, uncertainty about prognosis, and concerns about how
to communicate with patients and families who have diverse
information needs, expectations, and coping strategies.8
Cardiopulmonary resuscitation is another source of controversy,
and there have been calls for greater clarity about how decisions
are made and who should be consulted. In the United Kingdom,
professionals are directed to complete a “do not attempt
cardiopulmonary resuscitation” form if a cardiac or respiratory
arrest is an expected part of the dying process, so that
resuscitation would be unsuccessful and prevent a dignified
death.9 It is essential to talk with patients and their families about
shifting goals of care to focus on ensuring patients’ comfort as
they are dying, but detailed discussions about the process of
cardiopulmonary resuscitation may be distressing and
unwarranted. Where there are doubts about the outcomes of
resuscitation, the risks and benefits need to be discussed with
the patient, any nominated proxy, and family members able to
provide insight into the patient’s wishes. The poor outcomes of
cardiopulmonary resuscitation in people with advanced life
limiting conditions and the adverse consequences of attempts
at resuscitation need to be highlighted.
So what more can be done to encourage the public to talk about
death and dying and enable professionals, patients, and families
to have better conversations about care at the end of life? We
can actively support public awareness campaigns and make
information and resources to help people start future care
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BMJ 2014;348:g3699 doi: 10.1136/bmj.g3699 (Published 6 June 2014)
Page 2 of 2
EDITORIALS
planning more widely available in public places and in all
healthcare settings. Problems in healthcare delivery tend to lead
to calls for more education of staff.7 Evidence points to a need
for specific training in effective ways to raise the subject of
dying well before the last phase of life. Professionals who are
comfortable with sharing information at a pace that people can
tolerate and in ways that preserve their ability to function in the
world will be less worried about causing loss of hope and
distress.6 10 It is common, and often helpful, for people to shift
backwards and forwards between being more realistic about
their future and expressing hopes that are less likely to be
realised (box).
The World Health Assembly recently endorsed a resolution
calling for palliative care to be fully integrated into healthcare
in every setting and throughout the course of advanced
illnesses.11 Palliative care specialists offer expertise and support,
but ensuring that we provide good care for the 1% of the general
population and the 30% of hospital inpatients who are in the
last year of their lives is everybody’s business.12
1
2
3
4
5
6
7
8
9
10
11
ComRes. Dying Matters coalition. www.comres.co.uk/poll/1173/ncpc-dying-matters-survey.
htm.
Zheng L, Finucane AM, Oxenham D, McLoughlin P, McCutcheon H, Murray SA. How
good is primary care at identifying patients who need palliative care? A mixed methods
study. Eur J Palliat Care 2013;20:216-22.
Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for
end-of-life decision making. Ann Intern Med 2010;153:256-61.
Pinnock H, Kendall M, Murray S, Worth A, Levack P, Porter M, et al. Living and dying
with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative
study. BMJ 2011;342:d142.
Wright AA, Zhang B, Keating NL, Weeks JC, Prigerson HG. Associations between palliative
chemotherapy and adult cancer patients’ end of life care and place of death: prospective,
cohort study. BMJ 2014;348:g1219.
Jackson VA, Jacobsen J, Greer JA, Pirl WF, Temel JS, Back AL. The cultivation of
prognostic awareness through the provision of early palliative care in the ambulatory
setting: a communication guide. J Palliat Med 2013;16:1-7.
Royal College of Physicians. National care of the dying audit for hospitals, England. 2014.
www.rcplondon.ac.uk/sites/default/files/ncdah_national_report.pdf.
Gott M, Ingleton C, Bennett M, Gardiner C. Transitions to palliative care in acute hospitals
in England: qualitative study. BMJ 2011;342:d1773.
General Medical Council. Treatment and care towards the end of life: good practice in
decision-making. 2010. www.gmc-uk.org/guidance/ethical_guidance/end_of_life_care.
asp.
Clayton JM, Hancock KM, Butow PN, Tattersall MHN, Currow DC. Clinical practice
guidelines for communicating prognosis and end-of-life issues with adults and their
caregivers. Med J Aust 2007;186:S77-108.
WHO. Strengthening of palliative care as a component of integrated treatment throughout
the life course. Resolution EB134/28. 2014. http://apps.who.int/gb/ebwha/pdf_files/WHA67/
A67_R19-en.pdf.
William L. Non-palliative care staff need to deliver generalist end of life care. BMJ
2014;348:g3426.
Competing interests: We have read and understood BMJ policy on
declaration of interests and declare the following interests: None.
12
Provenance and peer review: Commissioned; not externally peer
reviewed.
Cite this as: BMJ 2014;348:g3699
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BMJ 2014;348:g3699 doi: 10.1136/bmj.g3699 (Published 6 June 2014)
Page 3 of 2
EDITORIALS
How to talk about future care with patients and families
Assess the person’s understanding and awareness
Do you have any worries about your health you’d like us to talk about?
What do you know about your illness and what to expect?
Find out what the person is thinking about the future
Do you ever think about what might happen if you were to get less well?
Is there anything particularly important to you or your family we should know about?
Sometimes people want a family member to make decisions for them if they get less well. Have you ever thought about that?
Decide how urgently the person needs information about his or her deteriorating health
The person is ready to have a conversation at any stage of illness:
-What do you feel is happening?
-Is there anything in particular you’d like us to talk about?
-Would you like us to discuss what might happen or how quickly things might change?
The person is stable and not wanting to think about the future—raise the topic again later
The person’s health is deteriorating but he or she is is ambivalent about being more open:
-I hope you will stay well for a long time, but I am also worried about . . .
-I don’t want to upset you, but it is difficult to look after you well if we don’t talk about what might happen. What would be the best way
for us to talk about that?
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