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UNIT 301:
Understand How to Provide Support
when Working in End of Life Care
Learner’s Workbook
Learning Activities
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Acknowledgements
Skills for Care is pleased to acknowledge the work of St Luke’s Hospice Plymouth
and Venus Training & Consultancy in researching and writing these learning
materials.
In the course of developing these materials they have drawn on the resources
available through the National End of Life Care Programme, Social Care Institute for
Excellence, Help the Hospices, e-ELCA and others.
Skills for Care wishes also to thank all those individuals and organisations that
supported the external consultation. All sources have been acknowledged and
references have been cited at the point of contribution.
This unit of learning has been developed and written by
Jane Mason
MSc; BSc (hons); RNT; RN; DN
St Luke’s Hospice Plymouth
Edited by
Jane Kellas
Director
Venus Training and Consultancy Limited
Katherine Kelleher
Director
Aspira Consultancy
Externally reviewed by
Geraldine Clay.
MSc; BA (Ed); RGN; RHV; RNT
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Table of Contents
Section
Section 1
Section 2
Content
Page
Table of the learning outcomes and assessment criteria
4
Introduction to the unit:
Introduction to the unit and the activities
What types of evidence are acceptable for each
learning outcome
7
Activity 1 – Influences on End of Life care provision (meets
learning outcomes 1.1 and 1.3)
16
Activity 2 – What about me and those I work with? (meets
learning outcomes 3.2, 3.3, 4.1, 4.2 and 4.3 )
31
Activity 3 – Reactions to death (meets learning outcomes
2.1, 2.2, 2.3, 2.4 and 3.1)
42
Activity 4 – Making future plans (meets learning outcomes
2.3, 3.4, 6.1, 6.2, 6.3 and 6.4)
64
Activity 5 – Providing care at end of life (meets learning
outcomes 1.2, 3.4, 5.1, 5.2, 5.3 and 5.4)
78
Activity 6 – Bereavement and loss (meets learning outcomes
3.4 and 4.4)
97
Glossary of terms
108
Continuation sheets (for photocopying)
109
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Table 2: Learning Outcomes and Assessment Methods
EOL 301: Understand how to provide support when
working in End of Life Care
Unit level 3
Credit value 4
GLH 33
Unit aim The aim of this unit is to assess the learner’s knowledge and understanding
surrounding the provision of support in end of life care
Learning
outcomes
The learner will:
Assessment criteria
The learner can
Own evidence log
(optional)
Page No
1. Understand
current approaches
to end of life care
2. Understand an
individual’s
response to their
anticipated death
Assessment
Type
Type of
evidence
presented
1.1 Analyse the impact of
national and local drivers on
current approaches to end
of life care
Knowledge
1.2 Evaluate how a range of
tools for end of life care can
support the individual and
others
Knowledge
1.3 Analyse the stages of
the local end of life care
pathway
Knowledge
2.1 Evaluate models of loss
and grief
Knowledge
2.2 Describe how to support
the individual throughout
each stage of grief
Knowledge
2.3 Explain the need to
explore with each individual
their own specific areas of
concern as they face death
Knowledge
2.4 Describe how an
individual’s awareness of
spirituality may change as
they approach end of life
Knowledge
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Table 2 continued.
Learning
outcomes
The learner will:
Assessment criteria
The learner can
Own evidence log
(optional)
Page No
3. Understand
factors regarding
communication for
those involved in
end of life care
4. Understand how
to support those
involved in end of
life care situations
Assessment
Type
Type of
evidence
presented
3.1 Explain the principles of
effective listening and
information giving, including
the importance of picking up
on cues and non-verbal
communication
Knowledge
3.2 Explain how personal
experiences of death and
dying may affect capacity to
listen and respond
appropriately
Knowledge
3.3 Give examples of
internal and external coping
strategies for individuals
and others when facing
death and dying
Knowledge
3.4 Explain the importance
of ensuring effective
channels of communication
are in place with others
Knowledge
4.1 Describe possible
emotional effects on staff
working in end of life care
situations
Knowledge
4.2 Evaluate possible
sources of support for staff
in end of life situations
Knowledge
4.3 Identify areas in group
care situations where others
may need support in end of
life care situations
Knowledge
4.4 Outline sources of
emotional support for others
in end of life care situations
Knowledge
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Table 2 continued.
Learning
outcomes
The learner will:
Assessment criteria
The learner can
Own evidence log
(optional)
Page No
5. Understand how
symptoms might
be identified in end
of life care
6. Understand
advance care
planning
Assessment
Type
Type of
evidence
presented
5.1 Identify a range of
symptoms that may be
related to an individual’s
condition, pre-existing
conditions and treatment
itself
Knowledge
5.2 Describe how symptoms
can cause an individual and
others distress and
discomfort
Knowledge
5.3 Describe signs of
approaching death
Knowledge
5.4 Identify different
techniques for relieving
symptoms
Knowledge
6.1 Explain the difference
between a care or support
plan and an advance care
plan
Knowledge
6.2 Identify where to find
additional information about
advance care planning
Knowledge
6.3 Describe own role in
advance care planning
Knowledge
6.4 Explain why, with their
consent, it is important to
pass on information about
the individual’s wishes,
needs and preferences for
their end of life care
Knowledge
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Section 1: Introduction to EOL Unit 301
General Introduction
This module is about how we support individuals at the EOL and how we offer
support to others involved in their care.
In the module you will have the opportunity to consider the current National and
Local drivers that affect how EOL care is provided.
You will consider how individuals may react when they are reaching the EOL and the
support you can offer from that point until the last days of life so that their death can
be as peaceful and dignified as possible. This is often referred to as a good death
and is supported by high quality EOL care.
Specifically the module will consider how we interact with individuals at EOL to
support their decisions and plans for the future; how EOL can be recognised and
major symptoms managed.
Learning Support
Due to the sensitive nature of End of Life (EOL) care, sometimes learners can
become upset whilst completing the learning activity. For example you may be asked
to consider your thoughts about your own death or watch video clips that include the
views of people who are actually dying.
At your introductory session your tutor/assessor will ask you to complete a support
agreement which will identify what you should do if you should become upset whilst
undertaking any of the following learning activities.
Lone study – The tutor/assessor will ask you to identify support networks
(these could be friends, family, colleagues) if you should become upset.
One to one – The tutor/assessor will ask how you would like to be supported
by your tutor/assessor should you become upset.
Work based learning- The tutor/assessor will ask you to identify a mentor/or
supervisor to whom you could go if you became upset at work.
Classroom based learning - The tutor/assessor will ask how you would like
to be supported should you become upset during classroom sessions. The
tutor/assessor will not be able to leave the rest of the class, so you may wish
to nominate a classroom buddy who could leave the classroom with you or
identify a quiet place where you can go to be alone and have a cup of tea.
This will be your decision and based on the facilities available.
Providing good EOL care can be one of the most rewarding caring experiences you
can have. It is a privilege to know that you have cared for someone as they have
taken their last breath in the world and that you have been part of their end of life
journey. It is often a comfort to know that you have helped someone meet their EOL
wishes and they have had a comfortable, dignified death. How you care for someone
at end of life can remain with relatives and loved ones for a long time and you only
have one chance to get it right. This is a big responsibility and so it is really important
that you take the learning activities seriously and that you also ensure that you learn
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at your own pace, to fully reflect and absorb the new EOL knowledge and skills you
will be developing throughout this unit.
Learning Activities
As everybody has different ways of learning new information, this workbook contains
a range of learning activities, which will assist you in meeting the learning outcomes
for the unit. Table 2 shows you the type of activities you may be asked to complete.
Table 2: Type of learning activities and symbols
Activity Symbol
Explanation
This symbol means you will need to access the internet *
This symbol means you will be reading something
This symbol means you will be asked to talk about something
with friends, colleagues, your tutor or assessor
This symbol means you will be asked to think about
something and you may be required to write your thoughts
down
This symbol means you will be asked to watch a clip from a
movie, TV programme or from the Internet eg youtube film
clip *
This symbol means you will be asked to write something in a
workbook or a worksheet or even provide examples of your
work with a service user eg a plan you have written
This symbol means you will be asked to research some
information. This might be through the internet, books and
articles or from talking to people you know
This symbol means your assessor will plan to conduct an
observation of your practice or will examine a work product
* Although every effort has been made to ensure video clips are appropriate, as they
are often freely available to all, we cannot be held accountable for any inappropriate
comments made about the clips. If you should see something offensive please
following the offensive reporting guidelines of the website concerned.
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For each activity you will see a clock symbol, which will provide you with
a guide to how long the activity could take you. Remember this is a guide
and the activity may not take as long as it says!
Each activity will signpost you to a range of resources to support your learning and
where appropriate learning materials will be provided eg an information leaflet or a
section of a website for you to read.
As you complete the activities in each section, it will be important for you to log your
evidence in the relevant evidence log that your awarding body has provided for you.
You can see which learning outcomes each activity covers by the table at the top below is an example; the learning outcome shaded in green is the one you have
covered when you successfully complete the activity. Your tutor/assessor will
support you to complete the activity. If you don't succeed at first, they will give you
further support to get it right!
1.1
2.1
3.1
4.1
1.2
2.2
3.2
4.2
1.3
2.3
3.3
4.3
1.4
1.5
1.6
4.4
4.5
4.6
1.7
Table 1 (page 4) shows you what learning outcomes you will have to achieve to pass
this unit and what the assessment criteria will be. The table also identifies whether it
is a skill or knowledge competency.
The table also provides you with an optional ‘own evidence log’. This is so you can
keep your own learning log and can discuss your learning and evidence with your
tutor and/or your assessor. Keeping your own learning log can be a useful tool to
help you keep track of your learning and progress. At the end of each activity you will
be reminded to complete the evidence log.
Each section will outline the activity and provide guidance on how to do
the activity. Look for this symbol to help you with ideas and suggestions
on completing the activity.
Plagiarism and Confidentiality
Plagiarism relates to claiming work to be your own when it is not. All work submitted
must be your own and not copied from anyone or anywhere else unless the source
of the information has been clearly referenced.
Confidentiality is essential in all aspects of care and that includes during your
learning. You may be asked to reflect upon aspects of your role and people for
whom you provide end of life care but it is very important that you do not disclose
any personal information about them. You must also be very careful not to include
any evidence that relates to them in your portfolio eg photographs or documents with
their details on.
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Portfolio of Evidence
It is recommended you keep a folder to record all the evidence you collect for this
unit. This will be your portfolio, which demonstrates your understanding on the
subject and will help your tutor/assessor ensure you are meeting the learning
outcomes.
End of Life Care for All (e-ELCA)
End of Life Care for All (e-ELCA) is an e-learning platform from the Department of
Health and e-Learning for Healthcare (e-LfH) in partnership with the Association for
Palliative Medicine of Great Britain and Ireland to support the implementation of the
Department of Health's National End of Life Care Strategy (July 2008).
The e-learning platform is aimed at health and social care staff working in end of life
care. The e-learning enhances the training and education of these staff, increasing
their confidence and competence to ensure well informed, high quality care is
delivered to people at the end of their life.
There are over 150 highly interactive sessions of e learning within e-ELCA. These
are arranged in 4 core modules:
Advance Care Planning
Assessment
Communications Skills
Symptom Management, Comfort and Wellbeing
Also, there are 3 additional modules in social care, bereavement and spirituality.
All of these sessions are freely available to NHS staff, social care staff who work in
an organisation registered with the Skills for Care National Minimum Data Set
(NMDS) or staff who work in a hospice. Staff who do not meet these criteria can
register at a cost of £199.
There are twelve sessions which are freely available to everyone, including
volunteers and clerical and administrative staff on an open access website:
www.endoflifecareforall.org.uk.
For further details see 'Access the e-learning'.
This is an additional resource and not mandatory for this unit as it may not be freely
available to every learner.
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Providing the right evidence
It is important that you provide the right type of evidence for the outcome you are
trying to achieve. Remember there are 2 types of evidence:
a. Competence / Skill – This is where you need to demonstrate something
about your practice.
b. Knowledge – This is where you need to demonstrate that you have
learned and understood some new information.
Table 3 shows you the type of evidence that is acceptable for the type of outcome.
Table 3: Suitable Evidence
Evidence methods
Direct observation of
you by assessor
Professional
discussion
Expert Witness
evidence
Work products
Reflective diary
Reflective statement
Written and pictorial
information
A scenario or case
study
Explanation
You will be observed by your
assessor carrying out your
everyday work activities in your
learning environment
You will take part in a preplanned and in-depth discussion
with your assessor
An expert witness, such as a
qualified professional, completes
a testimony of your competence
in the learning environment
where it would not be possible
for your assessor to observe
A work product is evidence used
in your work setting and
produced, or contributed to, by
you. For example care plans,
daily diaries, assessments
An on-going record of events
produced by you that take place
relating to your work, including
evaluation and reflection
A record of events, produced by
you, that relate to an event that
happened in your learning
environment, including
evaluation and reflection
Written answers and completed
activities set by your tutor or
assessor
Written or verbal account of how
you would respond to specific
events set down by your tutor /
assessor
Suitable for
evidencing
Competence
YES
Suitable for
evidencing
Knowledge
YES
YES
YES
YES
YES
YES
YES
YES
YES
YES
YES
NO
YES
NO
YES
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Reflective Practice and Reflective Accounts
Reflective practice is a process, which enables you to achieve a better
understanding of yourself, your skills, knowledge and practice. Although most of us
engage in thinking about experiences either before, during or after an event, we
need to document our understanding in order to clearly identify our learning,
consider the outcomes and evaluate the experience. The aim is to identify what we
have learnt in order to find new or different approaches to our future practice or to
recognise when something was best practice.
Learning comes from many different incidents and experiences that we have in life.
We can learn much about ourselves, others, our job, our organisation and
professional practice, as well as our abilities and skills, if we consciously take the
time to reflect on our learning. A popular model of reflection is Gibbs 1988 – The
Reflective Cycle. This is shown in the diagram below:
In some of the activities in this workbook, you will be asked to complete reflective
accounts. We recommend that you follow the model above to ensure that you
include everything.
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Introduction to understanding how to provide support
when working in end of life care
Caring for those who are dying may be a regular part of the work you do or
something you encounter only occasionally. In either case it is important to give the
best care possible.
In this model you will be given the opportunity to consider current approaches to End
of Life care that have been designed to promote high quality care in any setting
where an individual dies.
Death is not something often talked about in Western society but it is inevitable for
everyone. The module will consider the variety of ways in which an individual may
react when they are told they are reaching the End of Life and what support can help
them as they come to terms with dying.
One way that an individual can prepare for the End of Life is to make plans for their
future care known as Advance Care Plans. You will learn more about this and your
role in supporting an individual to prepare an Advance Care Plan.
An important role for social care workers is the support of others, the individual, their
family and friends, colleagues and other professionals who work in End of Life Care.
Key throughout is the importance of good communication to ensure high quality End
of Life care is provided and that the needs and wishes of the individual and those
close to them remains central to that care.
To ensure that appropriate care is given at the right time we need to be able to
identify when death is approaching and notice changes in an individual’s condition.
We need to identify the symptoms that the individual is experiencing and take the
right action to relieve pain or minimise distress.
As you work through the learning materials you will be asked to undertake a variety
of activities to support your learning and help you to grow in knowledge and
confidence to support people at the End of Life.
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Pre-learning assessment – Rate how confident you feel about providing support
when working in End of Life care. 1 being not very confident and 5 very confident
If you are not sure about completing this table please discuss with your
tutor/assessor.
Confidence level
1
2
3
4
5
Understand local pathways
for EoL care
Understand National
guidance for EoL care
Understand how quality of
EoL care is monitored
Support self and others
working in EoL care.
Support individuals to plan
for EoL
Supporting individuals at
the EoL
Supporting others after a
death has occurred.
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Section 2:
Activities
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Activity 1 – Influences on EOL care provision
___________________________________________________________________
Learning outcomes and assessment criteria
This activity links to the following learning outcomes and assessment criteria (page
4). Those highlighted green are the ones you will cover when you have successfully
completed it.
1.1
1.2
1.3
2.1
2.2
2.3
2.4
3.1
3.2
3.3
3.4
4.1
4.2
4.3
4.4
5.1
5.2
5.3
5.4
6.1
6.2
6.3
6.4
Assessment Method: Written account identifying and analysing national and local
drivers that influence End of Life care
Assessment Type: Knowledge
Activity 1: Influences on End of Life Care Provision
Approximately 7 hours and 30 minutes
For this activity you will need to answer some questions that demonstrate you
understand how National and Local factors affect the way End of Life Care is
provided. To understand how these factors might be used in your workplace
you will be required to do some research to find out what is happening in your
local area.
The importance of providing high quality End of Life care in whatever setting
that death occurs was recognised in the End of Life Care Strategy (2008)
Around half a million people die in England each year, of whom almost
two thirds are aged over 75. The large majority of deaths at the start of
the 21st century follow a period of chronic illness such as heart disease,
cancer, stroke, chronic respiratory disease, neurological disease or
dementia. Most deaths (58%) occur in NHS hospitals, with around 18%
occurring at home, 17% in care homes, 4% in hospices and 3%
elsewhere.
End of Life Care Strategy (DH 2008)
The End of Life Care Strategy goes on to say:
“Although every individual may have a different idea about what would, for
them, constitute a ‘good death’, for many this would involve:
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Being treated as an individual, with dignity and respect
Being without pain and other symptoms
Being in familiar surroundings
Being in the company of close family and/or friends.
Some people do indeed die as they would have wished but many others do
not. Some people experience excellent care in hospitals, hospices, care homes
and in their own homes. But the reality is that many do not. Many people
experience unnecessary pain and other symptoms. There are distressing
reports of people not being treated with dignity and respect and many people
do not die where they would choose to.
Groups have been identified where there are particular needs and the care
given at EOL is often not as good as it could be. In particular End of Life care is
often not as good for those individuals with learning disabilities or dementia.
The learning outcomes for this activity ask about the ‘drivers’ that relate to End
of Life care.
Think about what you understand is meant by the term ‘drivers’ and then write
a sentence in the cloud below to describe what you think is meant by the term
drivers for EOL care.
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Put simply drivers are the influences that make something happen or bring
about a change.
The aim of all the drivers is to ensure that EOL care is
Of a high quality
Person-centred
Well planned
Co-ordinated
Monitored
AND remains responsive to the individual’s needs and wishes
If we think about the drivers for EOL care we need to consider several areas.
The diagram below shows the main influences or drivers that impact on the
care of an individual at EOL
Standards laid down
by authorities that
monitor care
Government
Strategy
Individual at the
end of life
Local policy
drivers
Society’s
views
The people who
are supplying the
care
Success depends upon everyone understanding what is to be achieved and
working together to bring that about.
Let us look at each of these areas in more detail.
Society and death
To understand how care is given at EOL we need to understand how the
society in which the care is given regards death and dying.
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If we look at Western society the way death is regarded appears to have
changed over time.
In previous times death was often due to infection, accidents or disease and
very little medical help was available. Many children died at a young age, many
women died in childbirth. Death was an accepted part of life –this can be
referred to as ‘death accepting.’ Death usually occurred at home and little could
be done to avoid it happening. Ceremonies and rituals at the time of death
were public affairs. Death could happen at any time.
While it is still true that death can happen at any age and any time it seems
that society is now more reluctant to accept that death is an inevitable part of
living.
There are several reasons for this. One is that we can now control so much of
the world in which we live that we want to control death in the same way.
Medical advances mean that people now expect to live long lives and it is easy
to think of death only as something that will happen in the distant future. Even
though every human being will die eventually it is often seen as a failure of
medical care. This attitude has been described as ‘death denying’.
People in Western societies are generally reluctant to talk about death and
dying though in other countries and cultures death is much more accepted as a
natural part of life.
Increasingly we live in a multi-cultural society. That is a society that is made up
of people with different cultures and beliefs.
To ensure that the care given at the EOL is appropriate to that individual we
need to understand different approaches to death and dying so that the care
we offer is sensitive and appropriate to those beliefs.
Increasingly families are geographically separated and they are not able to
care for each other as easily.
Some people talk about death as having become ‘medicalised’ that is that care
is undertaken by professionals and not in the home setting.
Look at newspapers, television and the internet and find four examples of how
death is portrayed. Include these or reference them in your portfolio, you may
also discuss them with your tutor when you meet. Refer to each example
below and state in a paragraph how it is portraying death.
Example 1
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Example 2
Example 3
Example 4
How do you think this fits with what you have read so far in this activity –is
society ‘death denying or ‘death accepting’?
Is death shown as an accepted part of life?
Write your thoughts here:
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National Drivers
Until recently the care of people at the EOL was not a high priority in either
heath or social care situations.
While many individuals did receive very good quality at end of life this was not
the case for everyone and there were no standards of care that applied over all
areas that supplied EOL care.
The National drivers were written to set the standards for of EOL care - to
ensure that this care was available to everyone in what ever care setting they
were at EOL and to enable people to be cared for in the place of their choice
whenever possible.
National Guidance is supplied by the EOL Care Strategy (DH2008)
Aims of EOL Care
To treat people as individuals, with dignity and respect
To ensure people have a comfortable death with their physical and
psychological needs met
To ensure people can die in the place of their choosing, in familiar
surroundings and in the company of close family/friends
To ensure religious and spiritual needs are met
To ensure cultural needs are met
The strategy developed an EOL care pathway which had the following 6
principles
1.
2.
3.
4.
5.
6.
Discussions about future care
Assessment care planning and review
Co-ordination of care
Delivery of high quality services in different settings
Care in the last days of life
Care after death.
The following is known as the Six Step EOL care pathway
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Discussion as EOL approaches
Step 1
To increase the identification of people
approaching the end of life and promote
discussions about their end of life care wishes
Advance Care Planning
Step 2
To ensure everybody at EOL had an individual
care plan to assess their needs and preferences.
This is known as Advance Care Planning
Co-ordinated care at EOL
Step 3
To promote EOL registers and teamwork so that
individuals get the right services to support them
To deliver a high quality service
Step 4
Step 5
To provide high quality care regardless of where
the individual chooses to die. To ensure care is
monitored by audits and that staff receive
training in EOL care
Care in the last few days of life.
Managing EOL symptoms of pain,
breathlessness, anxiety, nausea or constipation
To provide care after death
Step 6
To ensure dignity after death; this step includes
care of the body and supporting family and
carers at this difficult time
Giving care following the pathway:
Helps individuals with advanced, progressive, incurable illness to live as
well as possible until they die.
Enables the supportive and palliative care needs of both patients and
family to be identified and met through the last phase of life and into
bereavement.
It includes management of pain and other symptoms and provision of
psychological, social, spiritual and practical support.
Other important National guidance can be found in:
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Route to Success (2010)
Dementia strategy (2009)
http://www.goldstandardsframework.org.uk/home
http://www.nice.org.uk/media/EE7/57/EoLCFinalQS.pdf
Local Drivers
The local drivers will identify areas that need to be addressed locally to meet
the strategy.
These will include:
•
Need to identify people when individuals are reaching EOL so that
suitable and individual care can be provided that recognises their
wishes.
•
Need to have specific care plans in place that outline the care for people
at EOL
•
Need to reduce deaths in hospital so that more people can die in the
place of their choice.
•
New local dementia / EOL care strategies in view of the increasing
number of people living with dementia and their particular care needs at
the EOL
•
Recognition of key role of care homes and domiciliary care providers to
ensure that staff have the right training and support to enable them to
provide good EOL care and ensure individuals are able to die in the
place of their choice.
National Standards for EOL Care
Look at the Care Quality Commission website at www.cqc.org.uk
and write a few sentences about their role in EOL care.
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The following standard relates to care of individuals at the EOL
CQC Essential Standard 4K
People at end of life will have:
•
•
•
•
•
Involvement in assessment and planning of care and decision making
about preferred options
Arrangements made to minimise disruption to them and those close to
them and those important to them
A dignified death, ensuring privacy, dignity and comfort
A plan of care recording their wishes for care of their body and
possessions after death
Appropriate specialist input
Adapted from Essential Standards of Quality and Safety. (Care Quality
Commission 2010)
Those who provide EOL care
You have a vital role in providing EOL care. So far we have started to look at
what makes high quality EOL care but this cannot happen without you and
others who support individuals at the EOL. It is the actual care given to an
individual at the EOL that provides comfort to the individual and their family and
friends.
What are your drivers to provide EOL care?
Write down four things that you think are important for you to do to ensure
good EOL care.
24 | P a g e
Now that you have had the opportunity to look at what the drivers are to ensure
high quality EOL care you can start to look at what is already happening in your
area to meet the standards for EOL care.
Find out if there is a local pathway in your area that guides how EOL care is
given. It may be the Six Steps pathway, follow the Gold Standards framework
or a local pathway for your area.
If there is a pathway then compare it with the Six Steps given in the National
strategy and look at how each step is reflected in the local pathway.
If there is no pathway then follow each of the six steps in the pathway given
previously in this workbook and see what is available in your area to meet
these requirements. Here is a reminder of those 6 steps:
1.
2.
3.
4.
5.
6.
Discussions
Assessment care planning and review
Coordination of care
Delivery of high quality services in different settings
Care in the last days of life
Care after death
25 | P a g e
Things you can look at for evidence of how EOL is provided in your area
include:
Policies referring specifically to EOL care
Specific documents for planning EOL care and ensuring an individual’s
wishes are met.
Inclusion of the individual and their families (as appropriate) in
assessment and review of care
Audit or review of EOL care
Systems to allow good communication with other agencies involved in
that care
Key worker system relating to EOL care.
26 | P a g e
Staff training in EOL care.
Written information available for individuals and their families eg relating
to planning for the future, guidance after a death has occurred,
bereavement care.
Celebrations or rituals to remember an individual after death.
When you have got your evidence together answer the following questions:
How do you think the national and local drivers are being met in your area?
27 | P a g e
Is there anything missing that would help to provide high quality EOL care?
Is there anything you would like to change?
Think about the six principles for good End of Life care given in the End of Life
Care Strategy (2008) and answer the following questions:
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Assessment and Care Planning is important
because…
Co-ordination of care is important is because…
Care in the last days of life is important
because…
Discussion about the future as EOL approaches
is important because…
Care after death is important because…
Monitoring of standards in different setting is
important because….
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It is important to realise that in your role you may not be able to change all the
things you would like to. However, by being aware of what is considered a
good way to provide EOL you may be able to influence the way care is offered
to individuals
By talking to others you work with including your manager
By being aware there will be things you can change about your own
practice to improve the EOL care you personally give
This is known as working within your sphere of influence
Further Reading
Department of Health Quality Markers for EOL Care.
http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.
uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_10168
4.pdf
End of Life Care Strategy (DH 2008)
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/1
36431/End_of_life_strategy.pdf
http://www.nice.org.uk/guidance/qualitystandards/indevelopment/endoflifecare.j
sp
Completed Activity
Now you have completed this activity we recommend you go back to your own
evidence log on page 4 and fill in the page number and type of evidence (eg case
study or reflective account) for the assessment criteria you have completed in this
activity. Remember – these are highlighted green in the grid at the start of each
activity.
30 | P a g e
Activity 2 – What about me and those I work with?
___________________________________________________________________
Learning outcomes and assessment criteria
This activity links to the following learning outcomes and assessment criteria (page
4). Those highlighted green are the ones you will cover when you have successfully
completed it.
1.1
1.2
1.3
2.1
2.2
2.3
2.4
3.1
3.2
3.3
3.4
4.1
4.2
4.3
4.4
5.1
5.2
5.3
5.4
6.1
6.2
6.3
6.4
Assessment Method: Written and pictorial information
Assessment Type: Knowledge
Activity 2: What about me and those I work with?
Approximately 6 hours
Providing care for individuals at the EOL is emotionally demanding work.
The ability to provide care and project positive feelings to those who are
cared for has been described as ‘emotional labour’.
Providing individualised or person-centred care means that we come to
know that individual well. It is right that we do so but also leaves us as
carers emotionally vulnerable.
We can feel we are being asked to always put others before ourselves so
we develop our workplace identity. We smile even when we feel sad or do
not show impatience even if we feel it.
The emotional labour involved in caring can be particularly intense when
we deal with people who are vulnerable as we attempt to support them and
their relatives and friends as EOL is reached.
How much each social care worker or other professional carer is affected
depends partly upon their own personality but without support and time
away from caring for the individual the result for anyone is likely to be:
The individual finds it difficult to continue to provide good care for
others
The individual copes by becoming distant from the people they care
for and work with
31 | P a g e
The individual becomes ‘burnt out’ which can result in physical and
mental illness.
Think about and write some bullet points about how you would recognise if
you or a colleague were finding it difficult to be in a caring role.
What might you do if you found this was happening?
To continue to care effectively you and the staff you work with need to
know how to access support. Later we will be looking further at how we
support individuals and relatives or friends but in this section you are asked
to think about yourself and those who work with you.
You will be asked to write a reflective piece that describes how you were
supported or how you were able to support work colleagues after the death
of someone you knew.
In this section we will start by understanding how our own attitudes to
death and dying can affect our approach to EOL care.
Just as the people we care for are individuals with their own experiences
and beliefs so are we as the people who care for them.
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Understanding how we think about death and dying can help us to support
and understand others even when their views are different from our own.
Having our own views and beliefs gives us the confidence and ability to
support others.
Think about the experiences in life that have affected how you think about
death and dying and make some notes after each question.
Q. How have your ideas about death and dying been formed?
This may include personal experience, cultural or religious beliefs, what
you have read or what you have seen on the television or in films.
Q. How comfortable am I talking about death and dying among family,
friends or colleagues?
Q. Have I talked about how I would like my own death to be, what
choices would I like to be able to make in regard to my death?
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Q. In my role as a professional, how important is it to consider end of life
care issues and the need to talk about them?
Q. Have you had experience of loss in your own life? How did the loss
make you feel?
This may not just relate to people you know dying but could be other
losses such as a job role, a career opportunity, divorce or breakdown of a
relationship
Q. What helped you to cope?
Q. Who provided support at this time?
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Q. What was the most helpful thing anyone did/said?
Q. What was the least helpful thing anyone did/said?
Q. Having thought about these issues, do you feel there are certain times
or circumstances when you would find it harder to listen and respond
appropriately to individuals and their families at the EOL?
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Now consider the following scenarios that relate to experiences of death
within a work situation.
Scenarios
You are on duty when the death occurs of an individual you are caring for.
You are working with a young member of staff who has already told you
she has never experienced anyone dying before.
Q. What might be the emotional effects on this member of staff and how
could you help them?
Q. You are on duty when a resident who has been in the care home for
many years and who was always known as a cheerful gentleman and a
great favourite with everyone dies. Who will need support and how can you
help to give this?
36 | P a g e
Q. You are talking to the relatives of someone who has just died when
you start to cry.
How do you feel?
Do you think it is OK to show your emotions?
The scenarios above look at dealing with a situation as it arises but there
are also on-going sources of support. These are both work related and the
ways we find for ourselves to feel supported in our private lives.
Organisational support
Supervision
Group sessions
Counselling services
Knowing who to approach –manager/mentor
Identify what support is available in your work place –it may include some
or all of the above or there may be other ways support is provided to staff
in your work area. State how you think these sources support staff and
what else could be done to offer good support to staff.
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Personal
This section will be individual to you.
Here you are asked to identify what helps you personally to continue in the
work you do. This should include your coping strategies; what you do on
the inside and the outside, for example reflecting on dealing with death
while listening to music might be something you do internally but you might
also play sport as an external of way of coping.
This about who gives you support:
At work
Away from work
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What is important to you?
How do you relax and renew?
Reflective Account
Think about when the death occurred of an individual you cared for in your
work role or of someone known to you.
Think about your internal and external coping strategies.
Reflect on how you felt, what support was available, whether you sought
support and how it helped you to cope. You may also like to reflect on what
support you would find helpful in the future.
Then think about others who cared for this individual. Reflect on what
support they needed and what you were able to do to help.
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Further Reading:
Completed Activity
Now you have completed this activity we recommend you go back to your own
evidence log on page 4 and fill in the page number and type of evidence (eg case
study or reflective account) for the assessment criteria you have completed in this
activity. Remember – these are highlighted green in the grid at the start of each
activity.
41 | P a g e
Activity 3 – Reactions to Death
___________________________________________________________________
Learning outcomes and assessment criteria
This activity links to the following learning outcomes and assessment criteria (page
4). Those highlighted green are the ones you will cover when you have successfully
completed it.
1.1
1.2
1.3
2.1
2.2
2.3
2.4
3.1
3.2
3.3
3.4
4.1
4.2
4.3
4.4
5.1
5.2
5.3
5.4
6.1
6.2
6.3
6.4
Assessment Method: Written piece and application of knowledge
Assessment Type: Knowledge
Activity 3: Understanding individual reactions to anticipated death
Approximately 5 hours and 30 minutes
In this section we will consider how the knowledge that an individual is
reaching the end of their life can result in a variety of feelings.
These feelings are closely related to those of loss and grief.
Although we tend to associate loss and grief as being something
experienced by family and friends after a death has occurred it can also be
experienced by anyone facing a major change in life.
In this section we will consider some of the areas that may concern an
individual when they know they are approaching EOL. We will explore how
the awareness of spirituality and an individual’s approach to spirituality may
change as EOL approaches.
We will consider several models that have been developed to help us
understand the feelings and reactions individuals may have to loss and
grief.
At the end of the section you will be asked to consider a scenario and
answer questions about it. This will give you the opportunity to think about
how theoretical knowledge of loss and grief can help you to support
individuals as they are approaching the EOL.
Losses faced at EOL
First think about what the losses might be that an individual may
experience when they know that EOL is approaching.
42 | P a g e
The diagram below highlights some of the loss that might be felt at the end
of life.
You might be able to think of other examples. Write them in the space here:
Loss of their
future hopes,
wishes, dreams,
family goals
Loss of
independence
with mobility,
eating, hygiene
etc.
Loss of
finances and
material
things
INDIVIDUAL
AT END
OF
LIFE
Loss of privacy
with strangers
involved in
personal care
Loss of intimacy or
sexual fulfilment,
physical relationship
changes, loss of
libido, loss of energy,
depression
Loss of job
role, role in
the family,
role in
community,
relationships
with friends
Loss of Self
Image
weight loss,
weight gain,
hair loss,
wounds
How any individual approaches the EOL will be unique to that person.
43 | P a g e
How an individual reacts depends on many factors. It might depend upon:
 Their age –are they reaching the end of a long life and feel they
have achieved all they wanted to in life.
 Their age - are they young and feel they still had many things they
wanted to do in life
 Do they have dependent children or other relatives
 Their relationships with family and friends
 Previous experiences of others who have died or of losses
 Regrets about things that have happened in life
 Their personality
 How the news is broken
 Their beliefs about what death means and if they believe there is
anything after death.
Now listen to some individual reactions from people who have been told
that their life is limited. Then write down some words that reflect how the
individuals reacted in the bubbles below.
http://www.healthtalkonline.org/Dying_and_bereavement/Living_with_Dying
/Topic/1186/
When people receive the news that they are reaching the EOL they may
react in different ways:
Disbelief –This can’t be happening to me
Denial –Well that is what I’ve been told but it can’t be true
Shock – I can’t take in what is happening –I don’t know how to cope
Horror –This is too terrible to think about
Anger –Why me? What can’t anything else be done?
44 | P a g e
Guilt – I should have looked after my health better. I should have gone to
the doctor’s sooner
Stoic acceptance – We all have to die sometime –it’s my turn now. I knew
from the start of this illness it would end this way.
Many of the people interviewed said they were shocked, especially if they
did not even know that they were seriously ill. Even those who knew they
had a serious illness were sometimes wholly unprepared.
Certain things such as cultural and spiritual beliefs will influence that
individual’s approach to life and death. However it is not enough to know
that a person belongs to a certain culture or religious group or does not
have any religious beliefs, as within these broad categories there are many
ways to approach or practice those beliefs. As EOL approaches individuals
may take comfort from their cultural, religious or spiritual beliefs. Some
people will find this is a time when they want to explore their beliefs in more
depth and try to find meaning in life and death. Others may reject
previously held beliefs as no longer offering comfort or because they are
angry at what is happening.
Some people see death as moving on to new life while others view it as the
end of everything.
Listen to the following individuals talking about their own beliefs about life,
dying and life after death then write a few sentences about what was
important to each individual:
Follow this link:
www.healthtalkonline.org/Dying_and_bereavement/Living_with_Dying
and click on religion, faith and philosophy from the left hand column.
Here people talk about their own approaches and beliefs about living with
dying. Select as many as you like but include:
‘He believes in life after death and thinks we should pray for the grace…’
‘Says she is probably a humanist’
‘Says people live after death through their genes’
‘Says that death is part of life’
Video watched:
What was important to them?
45 | P a g e
Video watched:
What was important to them?
Video watched:
What was important to them?
Video watched:
What was important to them?
Video watched:
What was important to them?
46 | P a g e
Write down a few words to describe how you think about death and dying.
You views are individual to you. You may agree with some of the people
talking on the videos but not all.
Think about and write down how you would support someone with views
that are different from your own.
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We have looked at a range of reactions people may experience when they
learn they are reaching EOL. We have looked at some things that may
influence how they understand the approach of death and what it will mean.
How an individual reacts is not set and feelings may vary from day to day.
Even distress and positive emotions are possible together.
Support to help an individual cope with the news they have a life shortening
condition can be gained from external sources. Support can be gained from
those around them, family, friends, carers, and members of the community
they belong to, religious or spiritual leaders.
Individuals may also gain support internally because of their beliefs, by
following cultural or religious rites that are important to them.
We will now look at some models of grief and bereavement that have been
designed to help explain what is happening to an individual and help us to
know how to support them.
Theories and Models of the Grieving Process
Theories and models of grief and bereavement attempt to explain the
experience of grief and provide useful frameworks for increasing our
understanding of what level and type of support individuals might need
during their grieving journey.
Below are several models we have provided for you but you might want to
Kübler-Ross: 5 Stages of Grief Model (1969)
(Denial, Anger, Bargaining, Depression and Acceptance)
This model has 5 stages of grief, although they are not completed one after
the other and not everyone goes through all stages.
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1. Denial
This first stage of grieving helps individuals to survive the loss. In
this stage, the world becomes meaningless and overwhelming.
Life makes no sense. The individual is said to be in a state of
shock and denial, feeling numb. They wonder how they can go
on, if they can go on, why they should go on. They try to find a
way to simply get through each day. The authors believe that
denial and shock help us to cope and make survival possible.
Denial helps us to pace our feelings of grief. There is a grace in
denial. It is nature’s way of letting in only as much as we can
handle.
2. Anger
The authors consider that anger is a necessary stage of the
healing process. Individuals need to feel anger and the more
anger that is felt, the less angry the person will feel and the more
they will heal.
3. Bargaining
In this stage the author considers before a loss, the individual
will do anything if only their loved one would be spared.
“Please God,” they bargain, “I will never be angry at my wife
again if you’ll just let her live.” After a loss, bargaining may take
the form of a temporary truce. “What if I devote the rest of my
life to helping others. Then can I wake up and realise this has
all been a bad dream?”
The grieving person wants life returned to what it was; they
want their loved one restored. They want to go back in time:
find the tumour sooner, recognise the illness more quickly and
stop the accident from happening: if only, if only, if only.
Guilt is often the bargaining companion. The ‘if only’ causes
individuals to find fault in themselves and think ‘if only I could
have done things differently’.
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4. Depression
After bargaining, the grieving individual’s attention may move into
the present. Empty feelings present themselves and grief enters
their lives on a deeper level, deeper than they ever imagined.
This depressive stage feels as though it will last forever. It is
important to understand that this depression is not a sign of
mental illness. It isn't usually clinical depression, more a deep
sense of sadness. It is the appropriate response to a great loss.
Individuals withdraw from life, left in a fog of intense sadness,
wondering, perhaps, if there is any point in going on alone. Why
go on at all? Depression after a loss is too often seen as
unnatural, a state to be fixed, something to snap out of. The loss
of a loved one is a very depressing situation, so depression is a
normal and appropriate response. To not experience depression
after a loved one dies would be unusual. Depression is said to be
one of the many necessary steps along the way to healing.
5. Acceptance
Acceptance is often confused with the notion of being “all right” or
“OK” with what has happened. This is not the case. Most people
don’t ever feel OK or all right about the loss of a loved one. This
stage is about accepting the reality that their loved one has
physically gone and recognising that this new reality is the
permanent reality. Finding acceptance may be just having more
good days than bad ones. People at this stage gradually begin to
enjoy life again, though some may feel they are betraying their
loved ones. People cannot truly live again until they have given
themselves time to grieve.
Worden (1989) 4 tasks of Mourning
Rather than seeing grief as a single event that people need to ‘get over’,
William J Worden (1989) described grief as a process that people needed
to work through and come to terms with. According to Worden the
bereaved need to work through four key tasks.
50 | P a g e
1.
2.
3.
4.
To accept the reality of loss
To experience and work through the pain of grief
To adjust to an environment in which the dead person is missing
To withdraw emotional energy and reinvest in new relationship
(Stroebe & Schute, 1999). Dual Process Model of Grief
This model believes that it is too simplistic to think that people grieve in a
stage after stage way. Indeed the complex nature of people’s lives means
that as well as grieving they have to deal with the everyday business of
living.
It is through doing grieving activities such as crying etc., then being
distracted with other life issues, that eventually an individual begins to
break the bonds and move on.
Dual Process Model of Grief
Everyday life experience
Loss –
orientation
Restoration –
orientation
Grief work
Yearning / Crying
Intrusive thoughts
& feelings
Reminiscing
Holding on to
‘bonds’
Avoidance
Denial
Distraction
Doing other things
Doing new things
Breaking ‘bonds’
With kind permission this section has drawn on materials adapted from
McCulloch & Lane (2010) Supporting the Bereaved: An introductory
workbook for health & social care staff involved in End of Life Care
Pub NHS Gloucestershire
Available online
www.nhsglos.nhs.uk
State 2 ways each of the models could help when dealing with loss and
grief.
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Kübler-Ross: 5 Stages of Grief Model (1969)
1.
2.
Worden (1989) 4 tasks of Mourning
1.
2.
(Stroebe & Schute, 1999). Dual Process Model of Grief
1.
2.
Are there any problems or limitations with these models?
52 | P a g e
Society and illness and dying
Society has different views on those who have an illness and those for
whom a cure is no longer possible.
Write down some words that are used to describe someone who has a
major illness and their approach to it. An example to help you start is
‘battling’
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Society views people who are dying as having a different role in life. They
are expected to peacefully accept what is happening; prepare to say
goodbye to others and reach a conclusion to their lives. This is a big
change from battling to quiet acceptance. No wonder individuals often need
support at this stage in life.
Dealing with the grief and loss that learning that the EOL is approaching
has been described as a journey. You will be one person who can support
that individual but you will not be alone.
Write a list of all the people you think could support an individual as they
deal with their loss and grief.
Remember that sometimes people may have overwhelming reactions to
what is happening to them and this may affect their ability to think clearly or
even to carry out daily activities such as eat, drink, wash or dress. These
individuals will need a greater degree of help than we can offer and
referrals to specially trained psychologists may be necessary.
Offering support
The 'six dimensions of the supportive role’:
• To value patients as individuals
• To connect with patients
• To empower patients
• To do for
• To find meaning
• Assist patients to 'preserve their own integrity'.
Davies & Oberles (1990)
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We have considered the sort of losses that an individual faces at EOL and
looked at models of loss and grief that show the sort of emotions that may
be felt by the individual. Now we need to think about how we support
individuals as they reach the EOL with the aim of helping them to feel at
peace at the EOL.
We have seen that the areas of concern will vary from individual to
individual depending upon their particular circumstances or beliefs.
The challenge is to know what support is needed at different times and for
each individual.
The key is to be able to pick up on the clues offered by the individual. This
may take the form of asking questions –either direct questions or giving
hints that they want to talk.
It is also important to remember that some people will try to hide how they
really feel. So someone who is always laughing and joking may be doing so
because they do not want to admit how they really feel. They may also be
in a stage of denial and pretending that this is not happening to them.
To support individuals we need to be prepared for the sort of questions they
may ask and have thought about how we could respond. This can be
difficult for us as death is not something that is normally talked about
everyday.
Complete the following tutorial, which will help you to think about how you
might deal with difficult questions.
Go to www.helpthehospices.org.uk/clip/index.htm and click on the
‘Answering difficult questions’ tutorial.
To make sure you are prepared to support the individual, think about and
write down some of the difficult questions you might be asked that you can’t
answer and think about your response. You are less likely to be taken by
surprise if you have thought about this in advance.
You could ask friends and family to help with this by asking them what
questions you think they may have if they were in that situation as people
approach death and dying differently.
What happens after death?
Difficult
questions I
might be asked
55 | P a g e
The individual may also give non-verbal clues that there are things that are
worrying them.
Good communication is essential to every role.
It enables the accurate transference of information, generates mutual
understanding, encourages reflection and questioning and strengthens
relationships.







Be there
Promote a sense of calm, time & safety
Check individual wants to talk
Respect individual’s feelings – promote dignity
Listen
Help them to express concerns / distress
Remained focused on individual but don’t be afraid to express ‘some’
of your own emotions
Remain confidential
Communication is more than just words
How much of communication is:
• What we say?
• The voice tone we use?
• Body language?
Think about and write down some of the non –verbal clues that indicate an
individual at EOL has concerns.
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To support individuals
We need to listen carefully to what they say
Be alert for any non-verbal clues
We need to respond appropriately and ensure that the information
we give is accurate
We need to be prepared for difficult questions and how to respond
We need to know how to seek the support of others as necessary
To support individuals we need to be able to listen and communicate well.
You are now going to play a game. You will need to ask a colleague, friend
or family member to do this with you. Nominate one A and one B. you will
need a third person to time you.
To start with A tells B all about what they did the night before or what they
plan to do at the weekend and B listens intently but doesn’t respond. The
third person should shout ‘stage 2’ after a minute, A carries on talking but B
gets slightly distracted although they are half listening their body language
might be a bit off for example, finally when the third person shouts ‘stage 3’
B stops listening completely to A.
You can then swap with your partner and try it the other way.
Q. How did it feel when your partner was listening to you? How did you
know they were listening?
Q. How did you feel when they only gave half their attention to listening to
you? How did you know you did not have their full attention?
Q. How did you feel when they stopped listening? How did you know they
had stopped listening?
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Q. How do you think you would feel if you were trying to talk about dying
rather than making general conversation?
Fostering Hope
It is easy when we think about a person who is dying to concentrate on the
physical care they will need especially in the very last days of life.
Anticipating dying is about making the most of the time that is left. Support
can involve helping an individual to achieve things they still want to or to
resolve issues in their past or present life.
Even when there is no possible recovery or cure it is still important to be
positive about living while being realistic about dying.
Complete the following tutorial.
http://www.helpthehospices.org.uk/clip/pn/pn-1/index.htm
and make notes in your portfolio.
Support in Practice
Consider the following scenario
Mia is a 54-year-old lady who has ovarian cancer.
She is married to Olaf and they have three children, two boys and a girl.
The daughter is married and lives close by. She is due to have her first
baby in two months time. The eldest son is away at University.
The youngest son lives at home with his parents and has Down’s
Syndrome. He works part time in a local café run by people with learning
disabilities.
Mia used to be a schoolteacher and since leaving work –due to her illness
–has spent as much time as possible going out on country walks with her
husband.
As well as teaching, Mia was very involved in fundraising for a local charity
to support the specialist school her youngest son attended.
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Mia is a very friendly lady who is normally very talkative.
You have known Mia for sometime and she has always had a very positive
attitude to dealing with her illness and the treatments and any side effects.
You feel you know a lot about Mia and her family but she has never
discussed religion or her spiritual beliefs with you.
Lately Mia has been getting short of breath; she has very little energy and
finds it harder to get around as her tummy is swollen. She has also been on
some steroid therapy which has meant she has a rounded face. She has
always been slim and smartly dressed but now finds few of her clothes fit.
Mia was told two weeks ago that there is no more treatment that can be
given. Her condition is incurable. It is not possible to know how long she will
live but she pushed the doctor to give her an idea in view of the impending
arrival of the new grandchild. He has said ‘months rather than years’
She has been very quiet since she heard the news and you suspect she
may have been crying in her room, as her eyes sometimes look red and
puffy. You have asked her what is wrong but she just smiles and insists she
is all right.
You are sitting with her when she sighs and says “ What is it all about?”
Now answer the following questions based on the scenario and what you
have learnt so far.
Using the Kübler-Ross: 5 Stages of Grief Model (1969) think about how it
could apply to Mia.
It will help to consider how she might be feeling at present, what losses has
she had and what losses is she facing.
Use the model to describe how you could support Mia throughout each
stage of her grief.
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What might be troubling her about the future?
If you didn’t explore the specific concerns Mia has and just spoke generally
about death, what might happen? Why is it important to explore specific
concerns?
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Although Mia has not talked about spirituality, from what you have learnt in
this activity about spirituality describe why it might be important to discuss
this with Mia as she approaches the end of her life?
Who else might you want to involve in supporting Mia?
Who else might need support and what would your role be in this?
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As you completed this exercise you may have been aware that, as well as
spiritual or emotional support, practical ways of preparing for the future are
important to help Mia cope. In the following section we will consider how to
support individuals to make Advance Care Plans about the care they wish
to receive at the EOL.
Further Reading
http://grief.com/the-five-stages-of-grief/
http://www.lindamorrell.com/?page_id=179
http://www.bereavementtoday.com/content/?action=show_page&id=21&page_i
d=78
http://www.support4change.com/index.php?option=com_content&view=article&
id=256&Itemid=246
http://www.dimensionsofculture.com/2010/11/cultural-aspects-of-death-anddying/
Completed Activity
Now you have completed this activity we recommend you go back to your own
evidence log on page 4 and fill in the page number and type of evidence (e.g. case
study or reflective account) for the assessment criteria you have completed in this
activity. Remember – these are highlighted green in the grid at the start of each
activity.
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Activity 4 – Making Future Plans
___________________________________________________________________
Learning outcomes and assessment criteria
This activity links to the following learning outcomes and assessment criteria (page
4). Those highlighted green are the ones you will cover when you have successfully
completed it.
1.1
2.1
3.1
4.1
5.1
6.1
1.2
2.2
3.2
4.2
5.2
6.2
1.3
2.3
3.3
4.3
5.3
6.3
2.4
3.4
4.4
5.4
6.4
Assessment Method: Written piece and quiz
Assessment Type: Knowledge
Activity 4: Making future plans
Approximately 4 hours and 30 minutes
In this section we will consider the importance of helping individuals to
prepare for the EOL by making sure their individual wishes and needs are
known. This forward planning involves making an Advance Care Plan.
In this section you will be asked to think about what is included in an
Advance Care Plan, the importance of an Advance Care Plan to the
individual and others and the difference between an Advance Care Plan
and a General Care Plan.
You will be asked to work with your tutor/assessor to undertake a quiz to
demonstrate what you have learnt.
What is a certainty is that if that need arises, we would all like to be
supported according to our wishes and preferences. None of us know
what the future holds. None of us know if or when we will need the
support of others.
What is a certainty is that if that need arises, we would all like to be
supported according to our wishes and preferences.
http://www.advancecareplanning.org.uk
What is an Advance Care Plan
As we have discussed in Activity Three, knowing that life is being limited by
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illness is a time when an individual may want to think about what this might
mean to them, their relatives or friends and make plans. There may be
particular concern that others know what your wishes are in the case that
you are no longer able to make your own decisions.
One way of making others aware of your wishes is by the process of
advance care planning. This can make an individual feel more in control of
a situation and more confident about the future knowing that their wishes
are known and can be acted upon.
It is important to remember that these plans will only be acted upon if the
individual can no longer make their own decisions.
This is a voluntary process. Some people would prefer not to think about or
make plans for the EOL. The decision not to have an Advance Care Plan
must always be respected and no one should be put under pressure to
complete a plan.
Read the following and make notes about
 What an Advance Care Plan is and why it is important
 What might be included in an Advance Care Plan
 How you might start a conversation with an individual about their
future plans at the EOL.
http://www.dyingmatters.org/sites/default/files/user/images/Resources/Prom
o%20materials/Leaflet_6_Web.pdf
And
http://www.dyingmatters.org/sites/default/files/user/Planning_for_your_futur
e_care_FINAL_010212.pdf
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How the plan is recorded will vary in different workplaces. You may have
documents you use in your workplace –if you are not sure you will need to
look for them and make sure you are familiar with what is being asked.
Sometimes these documents will have different names such as ‘Preferred
Priorities for Care” rather than Advance Care Plan. If you are not able to do
this, don’t worry just complete the following exercises with everyone else.
One important thing to remember is that advance care plans can only be
made if an individual has the capacity to make decisions for themselves.
Often advance care planning is only considered when an individual knows
that death is imminent. However, even though everyone expects to live a
long life this is not always so due to illness or accidents. It is important for
everyone to think about what plans and wishes they would want in place.
Making these plans and ensuring they are recorded means that relatives
and friends are not faced with trying to make decisions in an emergency or
at an emotionally difficult time and trying to guess what the individual would
have wanted if they could make their own decisions.
Thinking about plans for the EOL does not bring death any closer.
Making plans for how an individual wishes to be cared for in the future helps
them to feel they are still in control as their illness progresses.
The following exercise asks you to think about what is important to you and
what your wishes would be if you could not make your own decisions. Be
prepared to discuss the document and how you felt about completing it with
your tutor/assessor.
Complete an Advance Care Plan that shows what your future wishes are.
You may have your local form to use or may prefer to use the example
given in your resource file. Place a copy of your completed ACP in your
portfolio.
Think about
1. Did you include anything about spirituality in your plans?
This is an area that is often missed when supporting an individual’s plans
for the future. Remember spirituality is not only about religion – it is also
about anything that gives your life meaning and purpose and is important to
you.
If you did not include anything about spirituality think about why you did not
put this in and what you might like to include here:
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Legal and non-legal issues
You may have noticed that the document talked about legal and non-legal
decisions.
Some things included in an Advance Care Plan are wishes for what you
would like your future care to include, for example:
Who you want to be present in your last days, any music you would like to
be played, where you would prefer to be cared for, funeral arrangements.
Other decisions are ones that must be respected in law. These more
formalised aspects are governed by the Mental Capacity Act (2005)
These include:
1. Advance Decision to Refuse Treatment (ADRT)
Advance Decisions to refuse certain specified treatments under certain
circumstances.
An Advance Decision to Refuse Treatment (ADRT) can be used to
formalise some areas of the plan relating to treatment. It will come into
effect if the individual loses the capacity to give or refuse consent for certain
treatments. The individual writes an ADRT, often with support from
professionals, relatives or care workers. An ADRT cannot be prepared if the
individual lacks capacity.
To be valid an ADRT must be in writing, signed and witnessed.
Remember an individual can only refuse treatments. They cannot request
specific treatments or insist on a treatment that is pointless.
If the person has capacity and makes a voluntary and informed decision to
refuse a particular treatment, their decision must be respected. This is still
true even if their decision would result in their death. The sort of decisions
may include not receiving any further active treatment, not to have attempts
made to restart their heart if it stops, not to have artificial feeding.
An individual cannot make an Advance Care Plan asking to stop basic care
such as food and fluids by mouth – though they may refuse these at the
time.
Individuals cannot request that health or social care workers end or
intentionally shorten their life.
Key elements
Making an ADRT is entirely voluntary and this should not be
undertaken as a result of external pressure.
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An ADRT can only be made by someone over 18 years of age
An individual making an ADRT must have the capacity to do so
The ADRT should specify the treatment which is to be refused and
may specify the circumstances in which the refusal applies
The ADRT must be applicable to current circumstances
If the ADRT is to apply (even if the person’s life is at risk) it must be
in writing, signed and witnessed
An ADRT can only be used to refuse treatment not to demand
treatment or to request procedures which are against the law eg
assisted suicide
This last statement is very important. An individual can only refuse
treatments not request specific treatments or ask that their life be ended.
So -What if you are asked about assisted dying or euthanasia?
You may experience a dying individual who asks you about how they may
be assisted to die, or even where they may go to allow the act of
euthanasia.
Assisting an individual to die and the act of euthanasia are both illegal in
England. You should always inform a senior colleague if you are faced with
this situation.
The following link provides further information on this subject:
Euthanasia and assisted suicide
http://www.nhs.uk/conditions/Euthanasiaandassistedsuicide/Pages/Introduc
tion.aspx
Professionals can only respect the ADRT if they know about it. A copy
should be retained by the patient and (with consent) be retained in all
relevant patient records
2. Appointment of Lasting Powers of Attorney
A Lasting Power of Attorney means that someone is appointed to act on
that individual’s behalf if they no longer have capacity to do so for themself.
Power of Attorney is divided into two sections:
Health and Welfare
- Daily routine
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- Medical care
- Moving into a care home
- Refusing life sustaining treatments
Property and financial affairs
- Paying bills
- Collecting benefits
- Selling the private home
An individual can decide to arrange one or both parts of the power of
attorney. To be valid these have to be registered and there is a fee for this.
Who can be a Power of Attorney
The person must be over 18
They can be a
 Relative
 Friend
 Professional, such as a solicitor
 Husband, wife or partner
3. Advance statements to inform subsequent best interests decisions
What if a person does not have the mental capacity to make an
Advance Care Plan?
Advance Care Plans can only be made by someone who has the mental
capacity to make their own decisions. If the individual lacks capacity then
any decisions that are necessary will be made in that individual’s best
interests.
This means thinking about what is best for the individual and not what
anyone else wants.
Read the following on Making Decisions in a person’s best interests and
make some notes on a continuation sheet if you want to.
http://www.scie.org.uk/publications/dementia/decisions/decisions.asp
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Is an Advance Care Plan the same as a general care or support plan?
Follow the link below and download the chart that describes the differences
between general care planning and advance care planning. You may want
to make your own notes about what you learn. This will help you to answer
the questions in the quiz at the end of this section.
http://www.endoflifecare.nhs.uk/search-resources/resourcessearch/publications/the-differences-between-general-care-planning-anddecisions-made-in-advance.aspx
Thinking about your role in Advance Care Planning
Anyone who cares for someone at the EOL can be involved in Advance
Care Plan conversations providing they have had suitable training. As a
social care worker it may form part of your work role to ensure that
conversations are approached, carried out and recorded.
It can be hard to start such conversations but it becomes easier with
practise.
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Words aren't always easy to find….
Using more precise questions can be more useful than a general “how are
you” which invites a conventional, positive response.
You could try….
“Do you think you are feeling / your illness has got better ?
Or worse since we last met?”
“How is that affecting you?”
“How does it make you feel?”
“Do you have any worries about that?”
“What would you like me to do to help?”
It’s better than saying nothing!
Before carrying out an Advance Care Plan conversation it is important to
know that the person has the mental capacity to make his or her own
decisions. You may have the skills and knowledge to make an initial
judgement or you may have to seek more advice. Remember that even
when a person no longer has capacity to make decisions about their future
care they may still be able to make other decisions such as those about
what they eat or what they wear.
You need to know that for decisions about Advance Decisions to Refuse
Treatment, the GP or Doctor in charge will need to be involved.
You need to know that Lasting Powers of Attorney need to be correctly
registered to be valid.
Some facts about Advance Care Plans
Advance Care Planning discussions may lead to a variety of decisions
including:
Refusing further treatment now or under certain circumstances in the
future
Appointing someone to have Power of Attorney
Completion of a Do Not Attempt Cardio-Pulmonary Resuscitation
order (DNACPR)
Decisions about who should be consulted about the individual’s care
Where care should take place in the future
Special religious spiritual and cultural beliefs the individual wishes to
be respected
These are big decisions. Before making decisions about their future care
the individual must know all the facts so that they are able to make informed
decisions. Do not worry - you are not expected to have all the answers and
may need to involve others.
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Once an individual has made decisions about their future care it is
important this is recorded so that other people who need to know about it
are kept informed. An example might be where there is a decision in place
that the individual will not be admitted to hospital but this may still happen if
the paramedics are not aware.
It is also important to record if someone does not want to discuss their
future plans so that their decision can be respected while remaining aware
that they may want to discuss this at another time and being aware of any
cues that they wish to open a discussion.
Summary of Advance Care Planning guidelines
Adapted from: Capacity, care planning and advance care planning in life
limiting illness (NEoLCP, 2011)
An individual who wishes to make advance plans for their
future care should be guided by a professional who has had
suitable training
Wishes should be documented using the Mental Capacity Act as
guidance
End of Life Care plans must be discussed with the individual
whenever possible.
Staff should only make or share records of any discussion with
the person’s permission. In the case of individuals who lack
capacity, only if it is felt to be in their best interests
Any choices or advance decisions to refuse treatment are only
relevant when a person is no longer able to make their own
decisions. Until then, they can be asked about their decision at
the time.
Now look at the following video clip that shows the importance of making
advance decisions and making sure others know what your wishes are.
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Click on the link below to access ‘I didn’t want that’
http://www.dyingmatters.org/page/i-didnt-want-that
Write a few lines about what you think would have been different in each
case if the individuals had discussed their wishes in advance and state why
effective communication is important at the end of life.
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QUIZ
Answer the questions below. Your tutor assessor will arrange to meet with
you and go over these questions but thinking about them now will give you
the opportunity to check that you are clear about your answers.
Q. What is an Advance Care Plan?
Q. Describe your role in advance care planning
Q. List five things you should be aware of before carrying out an ACP
conversation?
1.
2.
3.
4.
5.
Q. What should you do if an individual does not want to make an Advance
Care Plan?
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Q. Explain the difference between a care or support plan and an Advance
Care Plan.
Q. Who needs to know about the Advance Care Plan?
Q. Give 3 reasons why, with their consent, is it important to pass on
information about the individual’s wishes, needs and preferences for their
end of life care?
1.
2.
3.
Q. Give 3 advantages of having an Advance Care Plan for each of the
following:
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The individual
1.
2.
3.
The family
1.
2.
3.
Professionals caring for the individual
1.
2.
3.
Q.
Where can you find additional information about advance care
planning?
Further Reading
Completed Activity
Now you have completed this activity we recommend you go back to your own
evidence log on page 4 and fill in the page number and type of evidence (eg case
study or reflective account) for the assessment criteria you have completed in this
activity. Remember – these are highlighted green in the grid at the start of each
activity.
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Activity 5 – Providing Care at EOL
___________________________________________________________________
Learning outcomes and assessment criteria
This activity links to the following learning outcomes and assessment criteria (page
4). Those highlighted green are the ones you will cover when you have successfully
completed it.
1.1
1.2
1.3
2.1
2.2
2.3
2.4
3.1
3.2
3.3
3.4
4.1
4.2
4.3
4.4
5.1
5.2
5.3
5.4
6.1
6.2
6.3
6.4
Assessment Method: Reflection on own practice in real work environment
Assessment Type: Knowledge
Activity 5: Providing care at End of Life
Approximately 6 hours
In this section you will be asked to consider the care that can be offered to
relieve pain and distress as EOL approaches.
You will be asked to answer questions relating to a scenario that will
demonstrate your understanding of recognising that EoL is approaching
and providing appropriate care to the individual and their family or friends.
I’m not afraid of
dying, I just don’t
want to be there
when it happens”
Woody Allen
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Some people come to terms with the idea of death but still have fears about
the process of dying.
Various people have described what is meant by the term a good death.
There is no one definition because, as we have seen, each individual has
his or her own particular needs and wishes.
Write or draw a picture of what you think is important to ensure an individual
has a good death. You may wish to refer to the definitions given earlier but
start by thinking about this from your own point of view first.
It is important that as we support those who are dying we retain the person
at the centre of that care. We need to ensure their thoughts, needs and
wishes are considered at all times. We need to ensure that their dignity and
privacy are respected. We need to be aware of the support family and
friends will require in the time leading up to and after the death.
We will now look in more detail of some aspects of support for an individual
who is dying.
Consider the following diagram:
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Care in the last days of life
Recognising EOL
Recognising
approaching death
Holistic
assessment
Tools to support
assessment
Individual
Main symptoms
at the EOL
Communication
Relieving
symptoms
Recognising EOL
“We cannot keep our patients from dying but we can strive
through both knowledge and compassion to make the dying
experience as comfortable and meaningful as possible for our
patients, their families and ourselves.”
(Plonk & Arnold, 2005)
To give good care at EOL we need to be aware of changes in a person’s
condition that indicate that their condition is deteriorating. This ensures that
there is planning and preparation to meet the individual needs of the person
and those close to them.
Definition of End of Life Care General Medical Council, UK 2010:
People are ‘approaching the end of life’ when they are likely to die within
the next 12 months. This includes people whose death is imminent
(expected within a few hours or days) and those with:
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Advanced, progressive, incurable conditions
General frailty and co-existing conditions that mean they are
expected to die within 12 months
Existing conditions if they are at risk of dying from a sudden acute
crisis in their condition
Life-threatening acute conditions caused by sudden catastrophic
events.
The Gold Standards Framework (2011) gives three triggers that indicate an
individual is approaching EOL. Any combination of these can be used to
make a judgement about the approach of EOL.
1. The surprise question “would you be surprised if this person were to
die in the next 12 months” – as you ask yourself this question you
will be taking into account many factors including if there are several
diseases present.
2. General decline – increasingly frail, increasing need for support,
increase in hospital admissions or choice to decline any active
treatment
3. Factors related to specific conditions.
Specific indicators of advanced disease for each of the three main
end of life patient groups: cancer, organ failure and elderly / frail /
dementia.
The link below to the Gold Standards Framework will give you more detail
about this.
In Activity One it was recognised that there are two groups of people for
whom high quality end of life care is often not provided. These are those
with dementia or those with learning disabilities. Difficulties around end of
life care for these groups are often around difficulties in communication and
recognising that End of Life is approaching.
Care of individuals with dementia at end of life
It can be particularly difficult to recognise that EOL is approaching for
people with dementia. Individuals with dementia find it particularly difficult to
communicate especially in the later stages of the disease and it is important
to watch for non -verbal clues that their condition is changing. Dementia is a
disease that can exist for many years and during this time an individual may
appear to decline but then stabilise again.
Click on the link below and scroll down until you find the specific triggers
relating to dementia care and make a note of them.
http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/EOLC-prognosticindicator-guide.pdf
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Notes:
Care of individuals with learning disabilities at end of life
People with a learning disability have poorer health than the general
population and face particular barriers if they come to need end of life care
and support.
Often, neither the person with a learning disability nor their carers are
aware that they need end of life care and support. When they do recognise
this, people with a learning disability face being treated by professionals
who have little understanding of learning disability and consequently have
less confidence in working effectively with them .
It can be hard to spot changes in the health of a person with learning
difficulties because they may not recognise the signs themselves, have
difficulty communicating what is wrong or be reluctant to tell anyone
because of bad past experiences of health care or fear of what is
happening. This could also be true of those without learning activities.
As social work carers involved with those with learning difficulties it is
important to observe carefully for any signs of changes in their health and
make sure the appropriate referrals are made promptly to ensure end of life
can be recognised and good care provided.
Further information can be found in:
‘Living and dying with dignity’
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‘The best practice guide to end-of-life care for people with a learning
disability’
These are available from http://www.mencap.org.uk
Communicating with others
Care at the EOL does not rely on just one person!
Write down who you think will be involved in providing EOL care or will
need to be kept informed.
You may be surprised at how many people there are on the list.
Did you remember to include the individuals themselves?
Good care can only be provided if everyone is kept informed.
If there is not good communication then poor quality care can result.
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Below are some examples of what can happen if communication is poor. In
the boxes on the right write down what you think the result of this poor
communication might be.
Individual and family unaware
death is imminent
Members of the multi –disciplinary
team not kept up to date with
changes in the individual’s
condition
Patient is restless and in pain
Information not passed to relevant
other services, including out-ofhours.
Information about cultural/spiritual/
religious needs is not shared.
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Think about the following and write your answers below.
1. How communication is managed within the place where the
individual is being cared for
2. With external agencies
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Approaching death
The triggers we talked about above identify EOL is approaching but it may
still be some time away. There are other signs that will indicate death is
more imminent. Thinking about and dealing with these last stages of life can
be worrying for those who are new to working in this area.
“I was frightened to death when I first cared for a resident who was
dying, but an older care assistant who mentored me said ‘Look, it’s
still Nelly, she’s still exactly the same as she was yesterday when you
washed and dressed her. She’s just one step nearer to death. She
still likes all the same things. Just because she’s dying it doesn’t
mean she’s suddenly stopped taking an interest in the world.’ ”
(My Home Life Movement, 2008)
As death approaches there are likely to be more changes which may
include:
•
Difficulty with or being unable to swallow oral medication. Medication
may need to be given in liquid form or via a small pump attached into
the skin called a syringe driver.
•
‘Withdrawing’ – not wanting to talk or engage with those around
them. Now losing interest in the world. An individual may still draw
comfort from the presence of others even though they do not appear
to be engaging.
•
Become bed bound –too weak to be able to leave their bed. The
individual becomes reliant on others for their care.
•
Express a realization that they are dying.
•
Have reduced cognition – cannot understand or make decisions
•
Diminished fluid and diet intake
•
Reduced consciousness levels
As death comes nearer:
•
•
Changes in breathing –such as increased bronchial secretions
(“death rattle”)
Cheyne Stokes breathing –this is where the breaths become further
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and further apart and the individual appears to stop breathing and
then restart.
Peripheral cyanosis – the fingers, toes and lips become blue
Temperature changes –the skin feels cool to the touch at the
extremities.
•
•
At the same time there is a reduced need for food and drink.
•
A loss of interest in and a reduced need for food and drink
is part of the normal dying process.
All patients should be supported to take food and fluids by
mouth for as long as tolerated.
•
(LCP Briefing statement March)
2011)
As the intake of food and drink decreases then there is an increased
need for good mouth care to ensure the individual is comfortable.
Without good mouth care the individual will develop a dry, sore mouth.
Infection is more likely. The result will be distress and discomfort for the
individual.
The result of poor oral care will be breath that smells. Imagine coming to
visit but finding it difficult to kiss your loved one because of this.
The result will be distress for the family and friends and loss of dignity for
the individual.
Main symptoms at EOL
There are some symptoms that are common in the last few days of life. It is
concern about these not being properly controlled that can distress both the
individual and their loved ones.
•
•
•
•
•
Pain (may be physical or psychological)
Agitation & restlessness
Nausea & vomiting
Respiratory tract secretions “Death rattle”
Breathlessness
Knowing what symptoms might occur means that we can be prepared to
watch for them and take steps to relieve them.
Some symptoms will require medication to be given. There are also things
we can do as carers to ensure the individual is comfortable.
It is now good practice for drugs to be available for that individual before
they are needed. This means that if the medication is needed there is no
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delay in getting the drugs. This is known as ‘pre-emptive’ prescribing or
sometimes as ‘just in case drugs’
Let us look at each of the main symptoms in turn.
Pain
Physical pain
This is probably the greatest fear any individual has about the dying
process.
Not everyone has pain at the EOL but do not forget that they may also have
pre –existing conditions that are painful.
Ensuring medication is given as prescribed and promptly if pain occurs will
keep the individual comfortable. It will mean that care, such as change of
position, can be done without further distress to the individual, their relatives
or carers.
Psychological pain
Avoiding psychological pain means having spent time earlier helping to
support the individual to deal with any worries or concerns.
Psychological pain can also be due to a loss of dignity.
As an individual becomes weaker they rely more on others to provide their
care. There is a loss of control over their own situation; they are reliant on
others to perform personal care with the loss of privacy. They rely on others
to maintain their dignity.
Think about what you could do to meet the following best practice
benchmarks.
Factor
Benchmark of best
practice
Attitudes and behaviour
Patients feel that they
matter all the time
Patients experience
care in an
environment that
actively encompasses
individual values,
beliefs and personal
relationships
Patients personal
space is actively
promoted by all staff
Communication
Personal world and
personal identity
Personal boundaries
and space
Communicating with
What I can do to meet
this benchmark for an
individual at End of
Life
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staff and patients
Privacy of patient confidentiality of patient
information
Privacy, dignity and
modesty
Availability of an area
for complete privacy
between staff and
patients takes place in
a manner which
respects their
individuality
Patient information is
shared to enable care,
with their consent
Patients' care actively
promotes their privacy
and dignity and
protects their modesty
Patients and carers
can access an area
that safely provides
privacy
Agitation and restlessness
There can be many causes of agitation and restlessness at EOL.
Sometimes it is part of the dying process and medication is needed.
Do not forget though to see if there are other causes.
Being in pain
Having a full bladder can cause anxiety and restlessness. Some people do
not pass urine and they need to have the bladder drained by a catheter.
Has the individual got a wet or soiled bed that is causing the agitation?
Do they need the comfort of someone with them?
Nausea and Vomiting
Medication may be needed to control this.
Observe closely for any signs of nausea or vomiting and take action
promptly to alert others.
If the individual is still taking food and fluids it may mean giving medication
prior to offering food and fluids.
Changes in breathing
As an individual reaches the EOL they may build up secretions in their
lungs. This can make the breathing noisy. This is often referred to as ‘the
death rattle’
Medication can help.
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Regular changes of position can also ease the symptoms.
Understanding what is happening and knowing how to keep the individual
comfortable can help to make caring for someone who is dying less
worrying
Supporting others
Remember that in our working lives we may meet many individuals who are
dying but for relatives or friends this may be one of the few times they have
this experience. As social work carers we can support them by explaining
what is happening at each stage. Good communication is vital. When
families are upset it can be hard for them to take in or remember
information. We need to make sure we spend time explaining and
answering any questions.
Some relatives or friends gain comfort from being involved in practical care.
Some find this difficult. Each situation is different and we need to be
sensitive and meet the individual needs.
Some relatives or friends will want to sit alone with the individual and their
privacy to do so must be respected. Some relatives or friends may want to
be present but feel more comfortable if a carer is with them or nearby.
Some relatives or friends may find it difficult to be present at this time. It is
important not to judge this –we cannot understand the relationship they may
have had with the person in the past. They may find it too distressing.
Where there has been a long illness and in particular where the person has
dementia and may no longer recognise even those closest to them they
may feel they have already lost the person they knew.
Holistic assessment at End of Life
The End of Life Care Strategy (2008) recognises the importance of carrying
out holistic assessment that covers physical, psychological, social, cultural,
environmental, spiritual and financial needs.
It is important that all theses areas are considered when assessing the care
needed for a person as they approach EOL.
To assist us in this assessment we may use tools to help us make an
assessment. Tools allow us to provide evidence of what is happening.
Tools allow us to monitor over a period of time and show if there is any
deterioration so that we can alert other members of the team as needed.
Commonly used tools are:
Abbey Pain Score This is used to measure pain in individuals who cannot
communicate eg those with dementia
A copy can be found at:
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http://www.apsoc.org.au/PDF/Publications/4_Abbey_Pain_Scale.pdf
MUST tool or other tools to monitor nutritional intake
Information can be found at:
http://www.bapen.org.uk/pdfs/must/must_full.pdf
Barthel index
This measures activities of daily living and mobility.
Information can be found at:
http://www.dundee.ac.uk/medther/Stroke/Scales/barthel.htm
Waterlow score
This measures the risk of a person developing pressure sores.
The website below gives more information including the steps that might be
taken to relieve pressure and a copy of the tool can be downloaded.
http://www.dundee.ac.uk/medther/Stroke/Scales/barthel.htm
You may have other tools that you know about, use or think would be
useful. Add the details here.
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Supporting Care in last days of life
Specific pathways of care may be used in the last days of life. Whichever
pathway is used, it should serve the same purpose. To:
Provide a plan of anticipated care, to be used within a given period of
time
Provide a plan of care specific to the condition which an individual
has. In this case, the plan is specific to care required when an
individual enters the last days of life
Provide a plan of care specific to the needs and wishes of the
individual
Provide all health and social care workers with a guide to care and
treatment required. This prevents inequality in care
Aid communication between health and social care workers
providing care to an individual
Incorporate national and local, policies and guidelines
May be used in any care setting where the individual is being cared
for, provided the health and social care workers have been trained in
its use
Can you name a care pathway that is used to support and guide care in the
last days of life?
The Liverpool Care Pathway is the most widely known pathway that was
developed nationally.
Using the Liverpool Care Pathway is a good tool that can be used to
improve communication, ensure care is given promptly when needed and
as a way of monitoring care.
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The Liverpool Care Pathway for the Dying Patient is a model of care
that helps health and social cares workers to focus on care in the last
hours or days of life when a death is expected. It is tailored to the
person's individual needs and includes consideration of their physical,
social, spiritual and psychological needs.
www.endoflifecare.nhs.uk
The LCP was developed by the Royal Liverpool & Broadgreen University
Hospitals NHS Trust and the Marie Curie Palliative Care Institute Liverpool
(MCPCIL), which is supported by Marie Curie Cancer Care. The MCPCIL
oversees the development and dissemination of the Liverpool Care
Pathway.
The LCP requires senior clinical decision-making, communication, a
management plan and regular reassessment. It is not a treatment in itself
but a plan for managing care that aims to support but does not replace,
clinical judgement. The use of the Liverpool Care Pathway should be
reviewed every 48 hours to ensure it is meeting the individual’s needs and
to ensure it is still appropriate.
The Liverpool Care Pathway is recognised as a model of good practice in
the last hours and days of life and has been implemented in hospitals, care
homes, in the individual’s own home / community and into the hospice. The
pathway guides staff in the treatment of the common EOL symptoms and
requires staff to review the patient on a regular basis. The LCP ensures that
the physical, psychological, social, religious, cultural, and spiritual needs of
the individual are met at EOL
There are a number of myths about the LCP
and it is important that as a care worker you
know the fact from the fiction. This will
enable you to support individuals and their
families and loved ones etc.
In order to separate the fact from the fiction read
The FAQ LCP fact sheet
http://www.endoflifecare.nhs.uk/media/1866867/Liverpool_Care_Pat
hway___FAQ_23_August_2012.pdf
Kate Granger’s (2012) article. The Liverpool Care Pathway for the
Dying Patient improves the end of life
http://www.guardian.co.uk/society/2012/nov/13/importance-open-end-to-life
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Further reading
Tips to Help You Recognise and Manage End of Life Symptoms
http://dying.about.com/od/thedyingprocess/tp/Common-Symptoms-At-TheEnd-Of-Life.htm
Now consider the following scenario and either:
Write an individualised care plan for Levi
Or
If you are not familiar with care plans write an account (which may include
pictures) to describe the care Levi would need in the last days of life.
As you do this remember:
The care should cover all the areas highlighted by the EOL Care
Strategy (2008)
Should include any tools you would use to support your assessment
To identify and address his symptoms
Should show how care changes over time as Levi’s condition
changes
Should be personal to Levi
Should identify any wishes or preferences
Consider any relevant documentation
Include communication with Levi and others
What care you can offer to ensure his comfort and avoid distress
What care may be offered by others
There is quite a lot of detail in the scenario but you may think of other
aspects to include –make clear in this case how you have made your
decision.
In addition to your care plan or written account, answer the questions
following the scenario. These will also help you to think about your care
plan or written piece.
Scenario
Mr R is an 85-year-old West Indian gentleman from Jamaica with severe
dementia. He likes to be called Levi and responds better when this is used
rather than Mr R.
He has suffered with arthritis for many years and this has left him with
limited mobility. He suffers with pain due to the arthritis. He also has COPD,
a lung condition that means he easily gets out of breath.
He has suffered with dementia for about 7 years. He can no longer make
decisions for himself. His dementia is very advanced and he is not able to
communicate verbally very well. He responds to some familiar faces. He
likes to sit in the lounge and watch those around him.
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He lived alone for several years following the death of his wife to whom he
had been married for 50 years. He moved into residential care two years
ago as his mental state declined.
They did not have any children of their own and the closest relative is a
nephew.
The nephew has fond memories of holidays spent with his aunt and uncle.
The nephew is very fond of his uncle and wants him to have the best care
possible. He has stated that Levi should continue to be cared for in the
Home and any unnecessary hospital admissions should be avoided.
The nephew now lives 200 miles away but telephones regularly.
The nephew has told you that his aunt and uncle were very involved with
the local community and attended a local evangelical Christian church for
many years. Levi liked to join in community events and parties. He was
known as a very good musician.
Over the past few weeks you have been monitoring Levi’s weight as he is
having increasing difficulties swallowing. His weight is gradually dropping.
Over the past week Levi has become more withdrawn and does not interact
with the staff. He is reluctant to get out of bed or be moved.
The GP visits and says that she thinks Levi is approaching the EOL. She
says that Levi should be kept comfortable and ‘all care given’. She
arranges for medication to be available if needed. Levi is unable to swallow
any tablets so he has been started on some liquid medication for pain.
Since then you have noted he has vomited on several occasions.
This morning you notice that Levi seems agitated and restless.
As the morning progresses Levi becomes less responsive and then lapses
into unconsciousness. His breathing alters.
Levi dies at 5pm
Additional learning
This scenario was based around a gentleman from a different culture. The
following links will tell you more about that particular culture.
http://www.onespace.org.uk/your-roots/west-indian-culture
http://www.movinghere.org.uk/galleries/histories/caribbean/culture/culture.ht
m
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Questions:
Q. What symptoms can you identify that Levi suffered with?
Q.
What effect do you think these symptoms had on Levi?
Q.
What were the signs that Levi was approaching the end of his life?
Q.
What do you think could have been done to relieve Levi’s symptoms?
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Further reading
Death and Dying: Religious Practices Wall Chart: A guide to general
principles
http://www.cumbria.gov.uk/elibrary/Content/Internet/536/656/3838485955.p
df
Completed Activity
Now you have completed this activity we recommend you go back to your own
evidence log on page 4 and fill in the page number and type of evidence (e.g. case
study or reflective account) for the assessment criteria you have completed in this
activity. Remember – these are highlighted green in the grid at the start of each
activity.
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Activity 6 – Bereavement and Loss
___________________________________________________________________
Learning outcomes and assessment criteria
This activity links to the following learning outcomes and assessment criteria (page
4). Those highlighted green are the ones you will cover when you have successfully
completed it.
1.1
2.1
3.1
4.1
5.1
6.1
1.2
2.2
3.2
4.2
5.2
6.2
1.3
2.3
3.3
4.3
5.3
6.3
2.4
3.4
4.4
5.4
6.4
Assessment Method: Research and identify sources of support.
Assessment Type: Knowledge
Activity 6: Reflective Account Bereavement and Loss
Approximately 3 hours and 30 minutes
Earlier in the module we looked at loss and grief experienced by an
individual as they approach the end of their life.
In this section we will revisit the ideas of loss and grief for those who are left
when someone dies.
Make a list of who will need support when an individual dies.
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To provide support to others when someone dies we need to understand
the sort of feelings people experience and what may be helpful.
Loss is a common human experience. How people experience loss
varies tremendously
Grief is a natural response to loss and there are no right or wrong
ways for expressing grief
Grief can be experienced psychologically, behaviourally, socially
and/or physically
Grief can be experienced in losses that are not always associated
with death
Grief involves people finding ways to adapt and cope with change,
explore meaning in their loss and find ways to have a continued
bond with the deceased
Emotions, expressions and understanding of grief are specific to the
person and their relationship to their social, cultural and spiritual
world
Rituals, customs and mourning practices have enormous spiritual,
social and personal significance for the dying and the survivors
Secondary stressors and life circumstances are risk factors that
impact processing and adjustment to loss and death
Distress and positive emotions are possible at the same time
Stressful and difficult caregiving situations can impact grief and
bereavement
http://inctr-palliative-care-handbook.wikidot.com/loss-grief-andbereavement
In the previous activities we looked at models of grief and loss that help us
to understand the feelings that are experienced when a loss occurs and
people can come to terms with that loss. We applied the models to an
individual who was nearing the end of life but they are equally valid for
those left when a death occurs.
Below are some additional areas to consider when thinking about how
people are affected by a death.
Anticipatory grief
We looked at loss and grief in relation to an individual when they know they
are approaching EOL.
This is loss and grief that is experienced before death. This anticipated loss
can also apply to family and friends.
If someone has had a prolonged illness or serious memory impairment,
family members may begin grieving the loss of the person's ‘former self’
long before the time of death. This is sometimes referred to as ‘anticipatory
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grief.’ Anticipating the loss, knowing what is coming, can be just as painful
as losing a life.
Family members may experience guilt or shame for ‘wishing it were over’ or
seeing their loved one as already ‘gone’ intellectually. This is particularly the
case of those who are suffering from Dementia etc.
Sudden Loss
A death that happens suddenly and unexpectedly is often due to tragedy.
This type of loss often generates shock and confusion for loved ones left
behind. Incidents such as a fatal accident, heart attack or suicide can leave
family members confused and searching for answers. In these cases, family
members may be left with unresolved issues, such as feelings of guilt that
can haunt and overwhelm a grieving person. In some cases if the deceased
person’s body has not been found relatives will not accept that death has
occurred. People experiencing the sudden loss of a loved one have a
particular need for support to get through the initial devastating shock, pain
and anger.
Loss of self
When you have cared for an individual close to you, especially over a long
period of time it can be hard to adjust after the death of the one you have
cared for has occurred. The majority of everyday (and often a large part of
the night too) has been filled with caring duties. You are often surrounded
by many people also involved in the care at EOL. Friends and relatives may
rush to help or say their goodbyes.
Suddenly there is a lot of empty time to fill. You may have lost contact with
a lot of your friends and given up work or social activities you were involved
in before.
Follow the link below to learn what informal carers, relatives and friends
have said about how they feel after a death occurs and what has helped
them to adjust and cope.
http://www.healthtalkonline.org/Dying_and_bereavement/Caring_for_someo
ne_with_a_terminal_illness/Topic/4184/
Make some brief notes about what you have learnt.
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Your role in supporting family and friends after a death
This support can be divided into immediate and ongoing support.
That is the support and advice that is needed at the time of death.
This will include:
Being with the family and friends while respecting their privacy
Listening to them and answering any questions or seeking answers
from others
Giving practical information about what will happen now. It is
important that this is written as well as spoken as it may be hard to
take in information when you are upset
Respecting particular wishes especially cultural, special rites or
religious or spiritual observances
Useful information:
What to do when some dies – Dying Matters
http://www.dyingmatters.org/page/what-do-when-someone-dies
National End of Life Programme Fact Sheet : What to do when someone
dies.
http://www.endoflifecare.nhs.uk/care-pathway/step-6-care-after-death.aspx
The support that is needed in the weeks and months that follow.
As a social work carer the amount of contact we have with others after the
death occurs will vary. Often it is very limited and the most important thing
is to signpost to future care.
Useful links which will give further information:
After a death - If you are a partner, relative or friend. Macmillan Cancer
Support.
http://www.macmillan.org.uk/Cancerinformation/Endoflife/Afterdeath.aspx
Bereavement. Helping you deal with the death of someone close to you
http://www.mariecurie.org.uk/Documents/PATIENTS-CARERSFAMILIES/Updated-pdf/bereavement.pdf
Supporting children and young people
http://www.crusebereavementcare.org.uk/Children.html
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Child Bereavement UK
http://www.childbereavement.org.uk/
Talking to children when someone is dying
http://www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/patientscarers/Talking_to_Children_when_someone_is_dying_%28a_leaflet_for_pa
r.pdf
A word about Complicated Grief
An individual’s sadness at losing someone they love never goes away
completely but it shouldn’t remain centre stage. If the pain of the loss is so
constant and severe that it keeps them from resuming their life, they may
be suffering from a condition known as complicated grief.
Complicated grief is like being stuck in an intense state of mourning. The
person may have trouble accepting the death long after it has occurred or
be so preoccupied with the person who died that it disrupts their daily
routine and undermines their other relationships and they are struggling to
manage everyday activities such as going to work, seeing friends etc.
Symptoms of complicated grief include:
 Intense longing and yearning for the deceased
 Searching for the person in familiar places
 Avoiding things that remind you of your loved one
 Extreme anger or bitterness over the loss
 Feeling that life is empty or meaningless
 Intrusive thoughts or images of your loved one
 Denial of the death or sense of disbelief
 Imagining that your loved one is alive
If someone exhibits these signs after 12-18 months then they may need
more specialist help and bereavement support.
Loss experienced by social care workers and other residents
In addition to informal carers, health and social care workers can also
experience loss when someone they have been caring for dies. In addition
other service users can also experience loss, loss of a friend and
companion.
This SCIE film focuses on how care homes support their staff after the
death of a resident. It starts by showing a memorial service at Amberleigh
House, a care home in Liverpool, during an annual event that celebrates
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the lives of residents who have passed away. The service is one of the
ways that helps staff to come to terms with the loss of people that they have
cared for. When a resident dies, there is a staff team meeting where people
can speak openly about their feelings. Bereavement support is also a key
feature of one-to-one performance reviews. Liz Mumford, the manager of
the home says that in the past the needs of staff were rarely considered
following the death of a resident but by ensuring that they have plenty of
support they are much better able to cope with loss.
http://www.scie.org.uk/socialcaretv/video-player.asp?v=supportingstaff
Having read the information in this activity, outline below the sources of
information
Write a reflective piece about either:
A. How you have supported others after a death in your work role
Include anything you might change in view of learning in this module
OR
B. If you do not work with individuals at the EOL then write about
how you would help to support someone after bereavement.
Include what you have learnt from this module.
Whichever option you choose, A or B, make sure you cover the following
points in your reflection:
What other sources of emotional support there were for those people
in addition to you and how did they help?
What were the emotional effects on other staff members caring for
the person who died
How important was communication in how you supported those
people?
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Now that you have completed these activities take a few moments to think
about the topics we have considered in this module:
The national, local and personal drivers to ensure good end of
life care
Understanding an individual’s response to anticipated death
Understanding how to support those involved in EOL care
Taking care of ourselves and others
Recognising EOL is approaching and how we can help an
individual and others to prepare.
Recognising and caring for an individual and others as death
approaches.
Understanding and providing high quality care at End of Life
Ensuring good communication
Supporting others after a death has occurred.
Write down 10 key things that you have learnt and will put into practice to
ensure the provision of good EOL care –this may include how you provide
care; what you understand about the support others need or things you
have learnt about EOL.
1.
2.
3.
4.
5.
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6.
7.
8.
9.
10.
Further Reading
Emotional and spiritual support for carers. St. Christopher’s Hospice. Marie
Curie Cancer Care
http://endoflifecareinformation.stchristophers.org.uk/looking-afteryourself/emotional-and-spiritual-support
Completed Activity
Now you have completed this activity we recommend you go back to your own
evidence log on page 4 and fill in the page number and type of evidence (e.g. case
study or reflective account) for the assessment criteria you have completed in this
activity. Remember – these are highlighted green in the grid at the start of each
activity.
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Summary
The good news is that you have nearly completed this unit!
You have considered how to assess and support an individual at the end of life.
As a last task, repeat the assessment you completed at the start of the unit to see if
your confidence has increased and discuss this with your tutor/assessor.
Confidence level
1
2
3
4
5
Understand local pathways
for EOL care
Understand National
guidance for EOL care
Understand how quality of
EOL care is monitored
Support self and others
working in EOL care
Support individuals to plan
for EOL
Supporting individuals at
the EOL
Supporting others after a
death has occurred
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CONGRATULATIONS!
You have now undertaken all the activities in this unit.
You now need to meet with your tutor/assessor – to discuss how you might present
these completed activities as evidence towards meeting the unit learning outcomes.
1.1
2.1
3.1
4.1
5.1
6.1
1.2
2.2
3.2
4.2
5.2
6.2
1.3
2.3
3.3
4.3
5.3
6.3
2.4
3.4
4.4
5.4
6.4
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Glossary of Terms
Term
End of Life
Definition
Considered to be the last 12 months that a person is expected
to live
Assessment
Gathering information about a person’s needs and how an
illness is affecting their ability to live their normal lives
Factors
The things, events or circumstances which will affect
something. eg what is affecting an individual’s ability to cope
with an illness
Holistic
Holistic means considering care or assessment from the
physical, psychological, environmental and spiritual needs of
an individual.
This enables people to be treated as whole human beings and
the impact of the illness on their quality of life is also
considered
Person Centred
Person centred care is providing care that is responsive to
individual personal preferences, needs and values and
assuring that the individual’s values guide all clinical decisions
National End of Life
Care Programme
This is a national programme funded by the NHS which works
across health and social care in England to improve End of Life
Care and support people to live and die well
Best Interest
Decision
This has to occur if someone does not have the mental
capacity (see below) to make a legal, healthcare, welfare or
financial decision for themselves.
This is one of the principles of the Mental Capacity Act.
The decision can only be made after an assessment has
deemed the individual does not have capacity.
Strict principles and codes of practice should be followed to
carry out the assessment and to make the best interest
decision, these are set out in the Mental Capacity Act
A term used in the National End of Life Care Strategy (2008) to
describe a death where everything was as the dying individual
wished for. The comfort and dignity of the individual was
maintained.
A ‘good death’
Informed consent
When an individual gives permission to have an assessment,
treatment or procedure with full knowledge of the risks
involved, probable consequences and the alternatives.
Mental Capacity
The cognitive ability (see above) of an individual to make
decisions that may have legal consequences for themselves
and/or for others affected by the decision. In particular these
decisions involve their health care, welfare and finances. An
assessment must be carried out to determine mental capacity.
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Continuation Sheets
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Continuation Sheets
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