UNIT 301: Understand How to Provide Support When Working in

Transcription

UNIT 301:
Understand How to Provide Support
When Working in End of Life Care
Tutor’s / Assessor’s Handbook
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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
5
Introduction to the unit:
Introduction to the unit and the activities
What types of evidence are acceptable for each
learning outcome
8
Activity 1 – Influences on End of Life care provision (meets
learning outcomes 1.1 and 1.3)
18
Activity 2 – What about me and those I work with? (meets
learning outcomes 3.2, 3.3, 4.1, 4.2 and 4.3)
33
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)
63
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)
100
Appendix
111
Continuation sheets for photocopying as required
Glossary of Terms
Template Support Agreement
Lesson Plans
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The purpose of this tutor book
This book illustrates the learners’ resources and provides you with the answers and
the learning points for each activity contained in the learner handbook. The answers
provided are indicative answers and have been highlighted in red. It is important to
note that a lot of questions ask the learners for their own views and opinions
therefore in these cases there are no right or wrong answers.
This book also provides a resources guide at the end of each activity. This will
signpost you to the various learning resources you will need to support the learner
on an individual basis and/or support classroom based activities.
The resource guide will inform you about lesson plans which can be found in the
appendices of this document. The resource guide also signposts you to the elearning resources that are available to support the units learning activities, which
are an optional resource. This information can also be found in the appendices. The
resources are all in an editable format so that you can amend them as required. The
way you deliver this unit is at your discretion and calls upon you to modify the
materials in the way that suits your learners’ needs.
These workbooks have been formatted for print and it is therefore advised that you
print the PDF version of the Learner Handbook for learners to use as a hard copy.
PDF versions should also be available to the learner electronically so they can
access the links to various Internet sites directly.
The Word version is available, however, for those who wish to use the workbook
electronically, please note that in this instance the formatting of the workbook will be
altered.
All the resources to support this learning can be found on the following website:
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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
Activities/Study 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
Evidence
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
Evidence
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 a
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
Evidence
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 individual’s 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, topics may be covered that
can cause upset to learners, for example asking them to consider their thoughts
about their own death, or watch video clips that include the views of people who are
actually dying. Tutors / Assessors have a responsibility to ensure that learners are
supported to learn safely and at their own pace, through a blended delivery style.
It is recommended that at the introductory session with learners you complete a
Support Agreement together, which will identify how they wish to be supported if they
become upset whilst undertaking any of the following learning activities. You have a
template Support Agreement in the appendix of this pack to use if you wish.
Lone study – Identify support networks (these could be friends, family,
colleagues) if the learner becomes upset.
One to one – Ask the learner how they would like to be supported if they
become upset.
Work based learning- Ask the learner to identify a mentor or supervisor to
whom they can go if they became upset at work.
Class room based learning - Ask the learner how they would like to be
supported should they become upset during classroom sessions. You will not
be able to leave the rest of the class, so you should encourage learners to
nominate a classroom buddy who could leave the classroom with them or
identify a quiet place where they can go to be alone and have a cup of tea.
This will be their decision and based on the facilities available.
Learners’ workbooks remind them that providing good EOL care can be one of the
most rewarding caring experiences they can have. It is a privilege to know that they
have cared for someone as they have taken their last breath in the world and that
they have been part of their end of life journey. It is often a comfort to know that they
have helped someone meet their EOL wishes and they have had a comfortable,
dignified death. How they 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 learners take the learning activities
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seriously and that they also ensure that they learn at their own pace, to fully reflect
and absorb the new EOL knowledge and skills they will be developing throughout
this unit.
Learning Activities
As everybody has different ways of learning new information, the learner’s workbook
contains a range of learning activities that will assist them in meeting the learning
outcomes for the unit. Table 2 shows you the type of activities they 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 web site concerned.
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For each activity, learners will see a clock symbol that will provide you
and them with a guide to how long the activity could take. Remember this
is a guide and the activity may not take as long as it says!
Each activity will signpost learners to a range of resources to support their learning
and where appropriate learning materials will be provided e.g. an information leaflet
or a section of a website for them to read. If they are not in the Learner’s Workbook
you will find these in the appendices of this handbook for photocopying.
Here is an example of how each activity works: The Learner’s Workbook shows
each activity in the style below:
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
1.2
2.2
3.2
4.2
1.3
2.3
3.3
4.3
1.4
2.4
3.4
4.4
2.5
Assessment Method: Reflective account
Assessment Type: Knowledge
Learners are provided with space to complete each activity where appropriate. You
will be provided with suggested answers. The answers given may not be exhaustive
and you will need to draw upon your own knowledge and experience as well as
additional research if required.
The appendices relating to this unit will provide you with all the resources you will
need to deliver learning and support assessment for this unit. It supports classroom
delivery, one to one delivery and distance learning for some aspects. We
recommend that a blended delivery approach is most effective.
As learners complete the activities in each section, it is recommended that they log
their evidence in table 1 (page 5). The grid at the beginning of each activity will show
them assessment criteria they have covered (highlighted green). This will help you to
map evidence across to awarding body matrix forms when you are confident that
learners have demonstrated knowledge or competence. If learners don't succeed at
first, you can give your further support to get it right!
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Table 1 (page 5) shows you and learners what learning outcomes will have to be
achieved to pass this unit and what the assessment criteria will be. The table also
identifies whether it is a skill or knowledge competency.
Each section will outline the activity and provide guidance on how to do
the activity. Look for this symbol to help you with ideas, further learning
and suggestions on completing the activity.
Plagiarism and Confidentiality
In their workbooks learners are reminded that plagiarism relates to claiming work to
be your own when it is not. All work submitted must be the learners own and not
copied from anyone or anywhere else unless the source of the information has been
clearly referenced.
Learners are also reminded that confidentiality is essential in all aspects of care and
that includes during their learning. They may be asked to reflect upon aspects of
their role and people for whom they provide end of life care but it is very important
that they do not disclose any personal information about them. They must also be
very careful not to include any evidence that relates to individuals in their portfolios
eg photographs or documents with their details on.
Portfolio of Evidence of Learning
We have recommended that learners keep a portfolio to record all the learning they
have collected for this unit. This portfolio will demonstrate their understanding on the
subject and will help you assess how the learner is meeting the relevant learning
outcomes.
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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
In their workbooks learners are informed that it is important that they provide the
right type of evidence for the outcome they are trying to achieve. Remember there
are 2 types of evidence:
a. Competence / Skill – This is where they need to demonstrate something
about their practice.
b. Knowledge – This is where they need to demonstrate that they have
learned and understood some new information.
Table 3 shows them 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
Learners have been provided with the following information:
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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Pre and Post Learning Assessment
We have provided learners with pre and post learning assessments in their
workbooks. This will support you and them to assess what they knew before and
what they have learned when completed.
The Learner’s Workbook has a table asking the learner to rate how confident they
feel about understanding and supporting the those at the end of their life.
1 being not very confident and 5 very confident. There is a second, identical table, at
the end of the workbook for them to complete again.
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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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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Activity 1 – Influences on EOL care provision
___________________________________________________________________
This activity links to the following learning outcomes and assessment criteria (page
5). 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
Tutor/Assessor Guidance:
In this section learners will be asked to consider how National and Local drivers
influence the provision of End of Life Care. They will then be asked to identify their
personal drivers in the provision of high quality end of life care.
The learners will be asked to start considering how death is generally viewed in Western
society (death denying) and asked to gather examples of how death is portrayed in the
media.
The National End of Life Care Strategy (2008) is considered in more detail and the Six
Steps pathway outlined. The learners are asked to consider the role of the Care Quality
commission in monitoring standards of care provision.
The learners are then asked to identify the local end of life care pathway in their area.
They may need your support to do so. If there is no pathway then it is suggested they
follow each of the six steps to guide their work.
The learners are asked to gather a variety of evidence to show how end of life care is
provided in their area. Examples of the type of evidence that would be useful are
detailed in the learner’s handbook.
A series of questions follows to help the learners consider and evaluate the provision of
end of life care in their local area. This includes asking if they would like to change
anything. They are reminded that they may not be in apposition to bring about some
changes and reminded they would need to talk to managers and work within their
sphere of influence when contemplating changes.
Finally in this section they are then asked to consider the Six Steps pathway and outline
the importance of each step in providing high quality end of life care.
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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:
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.
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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.
The idea of drivers can be a difficult concept for learners.
A simple explanation is given on following page - Put
simply drivers are the influences that make something
happen or bring about a change.
Asking the learners to think about it first will reveal their
understanding of the term. It may open discussion about
the different way we use the word ‘drive’ eg to drive a car
to get from A to B; drive eg cattle to force them in a
certain direction.
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 the end of their life.
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Government
Strategy
The people who
are supplying the
care
Individual at the
end of life
Societies
views
Local policy
drivers
Standards laid down
by authorities that
monitor 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.
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.
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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.
This exercise gives the learner the opportunity to start thinking about how
death is portrayed by looking for examples of where death is talked about.
The learner should be encouraged to provide a variety of portrayals from
different sources. Where the examples given are very similar the examples
below can be used to encourage different views and start discussion.
Examples may lead to discussion of:
Losing their battle –death as failure
The best person whoever lived–giving a certain portrayal of people who have
died
Peacefully –giving the concept of a good death
Violent death – murders in the newspapers or shown in TV programmes
Courageous or in the service of their country – giving a special place to death
of those who fight for their country
Martyrs –those who die for their beliefs and believe it guarantees a place in
paradise
Tragically –sudden death or death of someone young or in an accident
Suddenly –this can be seen even when the individual had lived a long life –
does it sometimes reflect missed opportunities to say goodbye or let that
person go.
These are only examples and the specific ones found by the learner will direct
the conversation.
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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:
Western society is generally said to be death denying but the learner
may be surprised to find how often it is portrayed in the media, books
etc.
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.
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The following is known as the Six Step EOL care pathway
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
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.
Step 5
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.
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Other important national guidance can be found in:
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 individual’s 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.
The role of the CQC is to monitor standards including end of life care in
whichever setting that care takes place.
The main standard to show how end of life care should be delivered is
Standard Four and this is presented in the learner materials.
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The following standard relates to care of individual’s 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.
Examples may include:
Knowledge/training
Empathy
Compassion
Individualised care
Good staffing levels
Resources
Achieving a good death for those at End of Life
Supporting family and friends
Communication
Listening
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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, 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 after death
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
Staff training in EOL care.
Written information available for individuals and their families eg
27 | P a g e
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?
The learner is encouraged to look at a wide range of evidence of
local drivers in their area. Some learners will be more able to collect
evidence dependant upon their involvement in end of life care or
personal circumstances. The tutor/assessor can collect their own
local portfolio to support the learners.
Is there anything missing that would help to provide high quality EOL care?
This will be locally led but the learner may identify some of the areas
they regard as being important to them in providing good end of life
care (see above) as not being in place
Is there anything you would like to change?
The learner should be encouraged to be realistic about what they
would like to change. This may lead to discussion of who they
may need to approach e.g. manager or other senior staff, to gain
support for change.
If the change is too wide ranging the learner should be
encouraged to think of one simple thing they could do in their
personal practice.
28 | P a g e
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:
Assessment and Care Planning is important
because…
It ensures that care is individualised and
addresses the specific concerns of that
individual. Review gives the opportunity to
change their plans over time so that end of life
care reflects their current wishes.
Coordination of care is important is because…
Care at end of life is multi- disciplinary. Good
communication ensures the individual receives
personalised care that meets their wishes and
needs and is given in a timely manner.
Discussion about the future as EOL approaches
is important because…
It allows the individual to know their future wishes
are known so giving the freedom to live rest of
life knowing that the future is taken care of.
Allows relatives and carers to know that they are
providing care and making decisions that the
individual would want when the individual can no
longer make their own decisions,
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Care in the last days of life is important
because… There is only one opportunity to
ensure a good death free from pain or distress.
The memories of those last few days will live with
those left forever.
Monitoring of standards in different setting is
important because….
There is only one opportunity to get care right for
each individual. The memories of the death of a
friend or relative will live on forever in the minds of
those who live on and if they have good
memories of the care given it can help them to
move on through the bereavement process. Staff
can gain satisfaction from knowing they have
provided high quality of care and may feel guilty
that they have failed if it is not high quality care.
Care after death is important because… Last
things we can do for an individual. Support helps
relatives and those close to the individual to
grieve in a natural way. Practical help is often
needed e.g. to register a death or information
about how organise a funeral as many people
meet death only a few times in their life.
Special ceremonies or ways of remembering can
give closure to all involved.
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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.go
v.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_10
1684.pdf
End of Life care strategy (DH 2008)
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/
136431/End_of_life_strategy.pdf
http://www.nice.org.uk/guidance/qualitystandards/indevelopment/endoflifecare
.jsp
Completed Activity
Now you have completed this activity we recommend you go back to your own
evidence log on page 5 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 1 - Resources
Web resources
Activity Sheets
6 Principles of End of Life Care
Power Points/ Lesson Plans
Drivers for End of Life Care – lesson plan and powerpoint
E- learning Resources
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_101684.pdf
End of Life care strategy (DH
2008)https://www.gov.uk/government/uploads/system/uploads/attachment_data/fil
e/136431/End_of_life_strategy.pdf
http://www.nice.org.uk/guidance/qualitystandards/indevelopment/endoflifecare.jsp
32 | P a g e
Activity 2 – What about me and those I work with?
___________________________________________________________________
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
At the end of this section learners will be asked to write a reflective piece about how the
learner was supported or supported colleagues after a death.
This section focuses on the needs of social work carers who work in end of life
situations. The care of family, friends or others close to the individual who is dying will be
considered later in the module.
This section introduces the concept of emotional labour.
The section considers the importance of caring for ourselves as social care workers
involved in end of life care and the colleagues we work with. Learners are asked to
consider how they might recognise that they or a colleague is finding it difficult to cope
with their caring role.
Learners are introduced to the importance of considering how their own ideas and views
about death and dying have been formed. They are then asked to consider experiences
of losses in their life due to death or other major losses such as job role, divorce etc.
Learners may need extra support to enable them to think about these personal concerns
especially if they have suffered recent or traumatic losses themselves.
The learners are then asked to consider a series of scenarios and identify possible
responses.
Finally the learner is asked to identify sources of support both within the work
organisation and in their own lives that enable them to continue in their caring role.
The learners are then asked to write a reflective account that demonstrates how they
have coped after the death of an individual they have cared for or known. A series of
prompts are included for the learner to guide their reflection.
33 | P a g e
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 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
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
you or a colleague were finding it difficult to be in a caring role.
Could include
Lack of compassion
Irritable
Tearful
Loss of appetite
Changes in usual behaviour
Sleep disturbances
Increased sick leave
Recurrent minor illnesses.
Forgetful
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Difficulty concentrating
Making mistakes
What might you do if you found this was happening?
Talk to individual
Suggest seeks support and offer ideas of support possibly including
seeing G.P
Possibly talk to manager – confidentially asking the individual
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.
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.
The questions in this activity ask the learner to think about their personal
experiences of death and dying. This can be very difficult for some people
especially if they have had recent or difficult experiences of loss. The
learner may need additional support to work through the questions.
They are also asked to think about their own death and what choices they
would make. Again this can be difficult for the learner but by thinking about
these subjects they will be better prepared to help others and are less likely
to find difficulties in the workplace once they have had the opportunity to
consider loss, death and dying in a safe environment
Answers to most of the questions below will be individual to the learner so
no suggestions are given.
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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?
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?
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?
Own recent losses
Difficulties in personal life
Situation reminds you of your own experiences
You relate closely to the situation eg person dying is same age as you or
someone close to you
Experience several end of life care scenarios in quick succession
Overtired and not relaxing away from work
Too high a workload.
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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?
The member of staff may experience a range of emotions such
as sorrow, shock, and fear.
Examples of support could be: talking with the member of staff
about what has happened
Explaining why symptoms may have occurred
Being prepared to answer any questions
Helping them to think about what death means
Giving a little time out of work area
Offering to accompany the member of staff to view the body or
to be involved in last offices if they feel able to
Offering to be available over the next few days if they want to
talk again.
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?
Examples are:
Family and friends
Other residents
Colleagues
Learner themself
Spending time
Informing everyone concerned
Letting people share memories
37 | 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?
Examples
May feel embarrassed.
Reassure the learner it is natural to feel sad. We are all human.
The important thing is to ensure that you or someone else can
still support the family. Family may feel it is a sign of how much
you care.
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.
This is an opportunity to explore with the learner how support is offered.
They may not be aware of what support is provided and may need to
be encouraged to discuss with someone in their workplace.
If they are not in a work environment discuss the types of support and
ask the learner how useful they think this would be.
38 | P a g e
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
What is important to you?
How do you relax and renew?
Learners are often reluctant to admit they need support or that it is
important to have other things in life. They may need encouragement to
identify how they relax.
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.
Further Reading:
39 | P a g e
Completed Activity
activity.
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Web resources
Activity Sheets
‘What about me and those I work with’ Lesson plan and PowerPoint
Further Reading
41 | P a g e
Activity 3 – Reactions to Death
___________________________________________________________________
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
This section considers the variety of feelings and reactions an individual may experience
when they are aware they are reaching the final stages of life. The section includes
considering some theoretical models of loss and grief to help the learner to understand
the feelings and reactions of individuals who are anticipating death.
At the end of this section the learners will be asked to consider a scenario and answer
questions related to it to consolidate their learning.
Activity 3: Understanding individual reactions to anticipated death
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.
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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.
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:
Extra areas could include:
Loss of control over their future
Loss of dignity
Specific factors related to disease eg ability to communicate; loss of mental
capacity
Loss of their
future hopes,
wishes, dreams,
family goals
Loss of
independence
with mobility,
eating, hygiene
etc.
Loss of privacy
with strangers
involved in
personal care
Loss of
finances and
material
things
Loss of job
role, role in
the family,
role in
community,
relationships
with friends
INDIVIDUAL
AT END
OF
LIFE
Loss of intimacy or
sexual fulfilment,
physical relationship
changes, loss of
libido, loss of energy,
depression
Loss of Self
Image
weight loss,
weight gain,
hair loss,
wounds
43 | P a g e
How any individual approaches the EOL will be unique to that person.
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/
The learner should identify that everyone reacts in their own way. Again
how they react will be influenced by their beliefs, culture, previous
experiences and how the news is broken.
Words might include
Shock
Anger
Denial
Resignation
Relief-that suffering will be over
Acceptance –we all have to die sometime
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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
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
individuals 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:
These clips and others that the learner may select, illustrate how people’s
beliefs about living, dying and what may or may not lie beyond death can
affect their approach to living and dying.
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’
45 | P a g e
‘Says that death is part of life’
Write down a few words to describe how you think about death and dying.
Again this is a sensitive area and some
learners may find it difficult. The right not to
share these thoughts should be respected but
it is important they have considered the issues
for themselves so that they are in a better
position to help others.
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.
This is a good opportunity to talk about nonjudgemental practice.
It is a good opportunity to encourage the learner to
learn more about other beliefs.
It is a good opportunity to emphasise the importance
of individualised care.
It may be appropriate to talk about not imposing
one’s own views. Examples could be used of the
disciplining of staff that eg offered to pray with
people.
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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.
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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. Understanding different reactions eg anger, blame etc.
2. Understanding that people will have a range of emotions when
facing death.
Worden (1989) 4 tasks of Mourning
1. Understand that it is important to give an individual time to adjust to
what is happening
2. Understand there are a range of emotions and that an individual may
experience some or all of them before re-engaging with the life they
have left
(Stroebe & Schute, 1999). Dual Process Model of Grief
1. Understand there is a process involving holding on to life or
mourning its loss before the individual is able to move on with life
2. Understand that sometimes crying or wanting the opportunity to
reminisce are important to allowing the individual to face impending
death and the support is to allow this process to take place.
Are there any problems or limitations with these models?
Main limitation is that there is a feeling that individuals will work
through the grieving process in a logical progression. Learners need
to realise that individuals may go from one emotion to another and
back again. They may experience a mix of emotions or feelings at the
same time. They may become stuck in one particular stage.
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’
Other examples may be courageous, survivor, determined to beat the
disease.
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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 individual’s often
need support at this stage in life.
Dealing with the grief and loss that learning that 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.
Relatives
Friends
The learner
Other social care workers
Other professionals
Cultural or religious leaders
Others who hold similar views or beliefs
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
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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)
We have considered the sort of losses that an individual faces at Elli 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.
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What happens after death?
Difficult questions
I might be asked
Examples might include:
Why me?
Am I dying?
Is my illness a punishment?
I want it to be all over?
How long have I got left?
It is important for the learner to understand that no one can give definite
answers to these questions. They should be advised to use their
communication skills to support the individual to explore how they are
feeling. The learner should think about seeking other support and who may
be appropriate to talk to the individual
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
 Listening
 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?
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Think about and write down some of the non –verbal clues that indicate an
individual at EOL has concerns.
Examples may include
Anxiety
Not sleeping
Fidgeting
Lack of concentration
Appearing to withdraw and become less talkative
Facial expression
Reluctance to join in conversations
Reluctance to socialise with others
Loss of appetite
Crying
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’
(after another minute) B stops listening completely to A.
You can then swap with your partner and try it the other way.
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Q. How did it feel when your partner was listening to you? How did you
know they were listening?
Probably a pleasant experience
Eye contact
Not interrupting
Posture
Encouragement to continue by nodding etc.
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?
Probably felt uncomfortable
Less eye contact
Interruptions
Posture changes
No encouragement
Q. How did you feel when they stopped listening? How did you know they
had stopped listening?
Probably embarrassed and did not wish to continue.
No eye contact
Probably part or fully turned away
Possibly sighing
Q. How do you think you would feel if you were trying to talk about dying
rather than making general conversation?
Would only feel able to if it was scenario one. The learner needs to realise
that support is needed to allow discussions to take place about sensitive
subjects
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.
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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 fund raising for a local charity
to support the specialist school her youngest son attended.
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 that 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.
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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.
Individuals do not follow the 5 steps in a linear fashion. It is
important that the learner realises that Mia my experience any
of the 5 emotions that Kubler –Ross outlines and may go from
one stage to another and back again as she comes to terms
with what is happening.
What might be troubling her about the future?
Mia has lost her hope that treatment will be successful. She has lost
her body image and is no longer slim and her ability to dress smartly
has been reduced. Her swollen face means she does not see the
same person she was reflected in the mirror. She is facing the loss of
her ability to enjoy the relaxation and companionship she enjoys by
walking with her husband as her mobility is reduced.
She is facing the loss of those close to her (at a time when she has
just faced a loss in the form of her son leaving home). She is facing
the loss of her ability to support her youngest son who is vulnerable.
She will have concerns about how her husband will manage without
her support.
She is facing the loss of her future plans including the possibility she
won’t live to see her grandchild.
Based on the scenario she may be experiencing several emotions at
present.
Her crying indicates she is sad and although it is a natural reaction to
be sad support is needed to avoid depression.
The fact she smiles when you ask what is wrong indicates she is
denying how she is really feeling.
Both these reactions may also indicate that she realises the reality of
what is happening and is starting to reach the stage of acceptance.
Mia ‘What is it all about’ and sighs this may indicate she is angry that
this is happening but also may indicate that she is in the bargaining
stage of grief, looking for answers.
The scenario only allows the learner to guess how Mia is feeling.
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The learner has tried to ask what is wrong but Mia has insisted
she is alright.
The comment ‘what is it all about’ indicates that Mia may now be
ready to talk about what her specific concerns are. It is an opening
for the social care worker to provide support by talking to her
about how she sees her future and begin an Advance Care Plan
conversation. By finding out what Mia’s specific and pressing
concerns are at this time the social care worker may also be able
to offer other support. This support could include:
Finding out who else is involved in her care and the support they
can offer or signposting to others eg GP to talk about how her
symptoms may develop and be controlled; a specialist palliative
care nurse to provide ongoing support; the local hospice for
respite or day care.
Where Mia would like to be cared for in the future.
What she wants to achieve in the time left.
It may involve simple things like arranging to go shopping for
clothes that fit, arranging a hairdressing appointment.
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?
Each individual will react in their own way and have specific
concerns. Talking in general about death does not meet the
needs that Mia has. If her specific needs and wishes are not
addressed she will continue to feel unsupported and her
concerns will remain. She may close communication because
she feels it is pointless and instead of support being provided
she will withdraw. There may be a loss of trust as she feels she
is ‘just another number’, ‘no one understands’, ‘I am alone with
my fears’
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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 approached the end of her life?
Spirituality is simply what gives meaning and purpose in life to
each individual. It is important to know what this means to Mia
to give her the opportunity to retain purpose and make the
most of her remaining time. It may be simple things like still
being able to get out into the countryside and nature she
enjoys.
Approaching death is a time when people re-examine their
beliefs about dying and death, already hold strong beliefs or
want to rekindle beliefs and observances from childhood or
earlier life. Knowing what Mia believes means that she can be
supported appropriately
Who else might you want to involve in supporting Mia?
As above.
Also family and friends
Other colleagues
Spiritual, religious or cultural leaders as appropriate.
Other professionals
Who else might need support and what would your role be in this?
Husband and children
Being available to talk or answer questions or seek further
support for them as needed.
Other colleagues and yourself – Mia is a young woman with a
very poignant story and other colleagues may find this hard to
cope with especially if their own experiences relate in some
way to Mia. Your role would be to recognise the need for and
seek appropriate support.
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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&p
age_id=78
http://www.support4change.com/index.php?option=com_content&view=a
rticle&id=256&Itemid=246
http://www.dimensionsofculture.com/2010/11/cultural-aspects-of-deathand-dying/
Completed Activity
evidence log on page 5 and fill in the page number and type of evidence (eg case
activity.
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Web resources
Individual reactions to hearing their life is limited
http://www.healthtalkonline.org/Dying_and_bereavement/Living_with_Dying/Topic/
1186/
Beliefs about dying
www.healthtalkonline.org/Dying_and_bereavement/Living_with_Dying
and click on religion, faith and philosophy from the left hand column.
Activity Sheets
Listening Game
Theories and models of death and dying Lesson plan and PowerPoint
Go to www.helpthehospices.org.uk/clip/index.htm and click on the ‘Answering
difficult questions’ tutorial.
http://www.helpthehospices.org.uk/clip/pn/pn-1/index.htm
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_id=7
8
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-and-dying/
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Activity 4 – Making Future Plans
___________________________________________________________________
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
There is a quiz at the end of this section. The learners are asked to think about
their answers prior to meeting with you to undertake the quiz.
This section focuses on the importance of making Advance Care Plans and the
need to respect an individual who does not wish to make plans.
Learners are asked to consider how advance care planning enhances care at end
of life for the individual, those close to them and professional carers.
They will be asked to develop an Advance Care Plan for themselves. This is
another point where learners may need additional support, as it is difficult to
consider our own end of life. The emphasis should be on thinking about what is
important to them as an individual.
Spirituality is an area that is often not considered when Advance Care Plans are
made. Learners are asked to consider if they included spiritual needs. If they did
not they are asked to consider their understanding of spirituality and why they did
not think about what gives meaning and purpose to their life.
Learners are asked to consider the facets of an Advance Care Plan, both those
informal wishes and requests and those governed by law such as making a will,
Advance Decision to refuse Treatment and the appointing of a Power of Attorney.
Documentation and the importance of others (with the individual’s permission)
knowing about the plans to enhance care are addressed.
There is consideration about how an individual may request not to undergo specific
treatments but cannot request specific treatments are undertaken. The concern that
an individual may request euthanasia or assistance to end their life is touched upon
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and the learner is directed to further reading.
Mental capacity is considered in relation to Advance Care Plans and the
possible involvement of an Independent Mental Capacity Advocate
considered.
Learners are asked to look at and explain the differences between General
Care Plans and Advance Care Plans.
To consolidate their learning they are asked to watch a video clip from Dying
Matters that illustrates what happened when Advance Care Plans are not in
place.
Activity 4: Making future plans
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, 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
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.
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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 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
 What an Advance Care Plan is and why it is important
What might be included in an Advance Care Plan?
Could include:
A plan for the future that comes into action if the individual is no
longer able to make their own decisions. It can be reviewed and
altered at any time while the individual has the mental capacity to
make decisions. It is important that all future decisions will be made in
the individual’s best interests.
Making future wishes known
Helping individual to feel in control of their future care
Allowing freedom to get on with living knowing the future is dealt with
Making known any treatments they wish to refuse in the future
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Allows family and those who are providing care to know they are
following individual wishes.
Can reduce any potential family conflict about what decision to make as
the individual’s wishes are known

How you might start a conversation with an individual about their
future plans at EOL
Could include
Take opportunity to look for verbal or non-verbal clues that the
individual wants to talk.
Ask questions such as ‘Have you thought about the future’, ‘Does
anything trouble you about the future’? ‘Would it help to talk about
your future and your plans’?
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.
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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:
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
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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.
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 e.g.
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
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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
- 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 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
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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 persons best interests
http://www.scie.org.uk/publications/dementia/decisions/decisions.asp
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.
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?”
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“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 then 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.
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
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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
clues 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.
Click on the link below to access ‘I didn’t want that’
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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.
Hard for families to make decisions on behalf of their
loved ones in a crisis and when feeling their own
emotional reaction. May feel they are doing best for the
individual but may not be what the individual would want.
If communication had taken place then the individual’s
wishes would have been known.
1. No family conflict as they would know where he
wanted to be cared for
2. No aggressive treatment as brother would know his
wishes and would have had chance to ‘let go’ as he
would know what the wishes of his brother for a
peaceful death and no aggressive treatments.
3. Care for mother might have been in her own home
with her familiar things around her and support
there rather than moving. Obviously the relative is
worried about her safety and care needs but the
lady would have retained independence and dignity
if she had stayed at home.
4. Funeral arrangements were made with the best of
intentions but failed to meet what the individual
would have wanted.
5. Pets are important too and peace of mind can be
gained by making sure their future care is secured.
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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?
Making your wishes about your future care known. May include informal
and legal aspects.
Preferences for place of care
Special considerations
Making a will
Appointing a Power of Attorney
Decisions about refusing treatments (Advance Decision to Refuse
Treatment)
Q. Describe your role in advance care planning
To be aware of opening such conversations
Aware of local documentation
Aware of who else to involve
Q. List five things you should be aware of before carrying out an ACP
conversation?
1.
2.
3.
4.
5.
Need for privacy
Individual has capacity to make own decisions
Not everyone will want to make plans and respect this
People can tire quickly and may need to have several shorter
conversations
Regular reviews to check wishes still valid or give chance to change
them
Q. What should you do if an individual does not want to make an Advance
Care Plan?
Respect this. Do not force them in any way. Record their decision so that
they are not always being asked
But revisit at a later date or if they indicate they now want to make plans.
Q. Explain the difference between a care or support plan and an Advance
Care Plan.
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Care plan is the day to day care required by an individual.
Advance Care Plans are about future care and only come into operation if
the individual can no longer make their own decisions.
Q. Who needs to know about the Advance Care Plan?
Those involved in the care of that individual but individual must give
permission for them to be shared. Do not forget out of hours or visiting
paramedics and ensure any relevant information is readily available
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. So that individual wishes can be observed and care individualised
2. To prevent distress to individual and relatives by knowing they are
acting as the individual wants
3. To prevent unnecessary hospital admissions.
Q. Give 3 advantages of having an Advance Care Plan for each of the
following:
The individual
1. Retains control over their future
2. Peace of mind and freedom to enjoy the life left knowing future is sorted
3. Safeguards interests of family or friends
The family
1. Avoids difficult decisions in a crisis situation
2. Reduces potential family conflict
3. Peace of mind that they are acting as the individual wanted
Professionals caring for the individual
1. Know they are acting in the individuals interests
2. Can provide individualised care
3. Easier to support family and friends of the individual
Q.
Where can you find additional information about advance care
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planning?
Advance Care Planning for Health and Social Care workers
http://www.endoflifecare.nhs.uk/assets/downloads/pubs_Advance_Care_Pl
anning_guide.pdf
And various other sites including dying matters
Further Reading
Completed Activity
activity.
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Web resources
‘I didn’t want that’
http://www.dyingmatters.org/page/i-didnt-want-that
Activity Sheets
Quiz questions
Advance Care Plans
http://www.dyingmatters.org/sites/default/files/user/images/Resources/Promo%20
materials/Leaflet_6_Web.pdf
http://www.dyingmatters.org/sites/default/files/user/Planning_for_your_future_care
_FINAL_010212.pdf
Further Reading
Euthanasia and assisted suicide
http://www.nhs.uk/conditions/Euthanasiaandassistedsuicide/Pages/Introduction.as
px
Differences between advance care plans and general care plans
http://www.endoflifecare.nhs.uk/search-resources/resourcessearch/publications/the-differences-between-general-care-planning-and-decisionsmade-in-advance.aspx
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Activity 5 – Providing Care at EOL
___________________________________________________________________
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
At the end of this section the learner will be asked to answer questions in relation to
a scenario about an individual at the end of life.
First the learner will be asked to consider what care is need to ensure a good
death. They are reminded of the importance of the individual as central to the care
given and the importance of maintaining privacy and dignity.
Information is given about recognising that end of life is approaching based on the
Gold Standards framework. Particular consideration is given to those with dementia
or learning disabilities, as these are groups known to receive poorer end of life care
than the general population.
The importance of good communication is emphasised and the learner is asked to
think about how many people will be involved in care at the end of life.
The learner is introduced to the main symptoms that occur at the end of life and
how to recognise that end of life is approaching. Information is given about relieving
the main symptoms.
Examples are given of tools that can support assessment of individuals at the end
of life, in particular those for use where communication is difficult. The learner is
encouraged to add any other examples.
Finally the learner is asked to answer questions about a scenario relating to end of
life care and further suggested guidance is given below.
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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
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.
This consolidates the work earlier in the module about what personal
drivers might be in Activity One and thoughts about planning one’s own
future care.
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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:
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)
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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:
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 theses 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
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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
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’
‘The best practice guide to end-of-life care for people with a learning
disability’
These are available from http://www.mencap.org.uk
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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 need to
be kept informed.
May include
The individual
The family or nominated friends (care confidentiality)
Colleagues
GP
District nurses
Specialist nurses
Other health care professionals
Religious, spiritual or cultural leaders
IMCA
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.
The following table provides 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
Individual and family -Unable to
prepare
Anxiety
Unable to make plans
Unable to say goodbye
Relatives left with feelings of
Shock
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Unable to be with individual at end
of life
Keep memories of lost opportunity
Anger
Guilt
Difficulties in bereavement
Members of the multi –disciplinary
team not kept up to date with
changes in the individual’s
condition
No preplanning such as medication
ready if needed.
Inadequate symptom control
Patient is restless and in pain
Distress to individual, relatives,
friends and carers
Difficulties in carrying out
appropriate care for individual
Good death not achieved and will
stay in memory of those involved
Information not passed to relevant
other services, including out-ofhours
Poor symptom control
Inappropriate or unnecessary
treatments
Unnecessary hospital admissions
Individual may not be cared for or
die in the place of their choice
Information about cultural/spiritual/ Beliefs and wishes may not be met.
religious needs is not shared
Appropriate people may not be
present at end of life
Rites such as last offices not
performed
Distress for individual and those
close to them
Think about the following and write your answers on the next page.
1. How communication is managed within the place where the
individual is being cared for.
2. With external agencies
This will depend upon local situation.
If the learner is not in a work situation they should be
encouraged to consider ways communication may take place.
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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’ 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 loosing 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
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they are needed. This means that if the medication is needed there is no
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 and write your answers in the table.
Factor
Benchmark of best
practice
Attitudes and
behaviour
Individuals feel that
they matter all the time
What I can do to meet
this benchmark for an
individual at End of
Life
Own actions
Encourage
appropriate behaviour
from colleagues
Individualised care
planning and care
delivery
Maintaining respect
and dignity
Listening
Involving in decision
making
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Personal world and
personal identity
Individuals experience
care in an environment
that actively
encompasses
individual values,
beliefs and personal
relationships
Personal boundaries
and space
Individuals personal
space is actively
promoted by all staff
Communicating with
staff and individuals
Privacy of individuals confidentiality of
patient information
Privacy, dignity and
modesty
Availability of an area
for complete privacy
Care plans reflect
individual wishes and
choices
Have things near them
that are important to
them
Visitors welcomed
Individual able to take
part in social activities
or hobbies
Privacy
Knocking before
entering room
In community
remembering you are
a guest in someone’s
home
Time given to be
alone or with family
Communication
Language used eg
between staff and
preferred name
individuals takes place Not talking over
in a manner which
individual
respects their
Not shouting across
individuality
room especially about
personal issues
Minimising barriers to
communication
Not using jargon
Taking time to be
understood
Individual information is Ensure consent
shared to enable care,
gained
with their consent
Ensure information
documented and
available to
appropriate others
particularly out -of hours, paramedics
Individuals care actively Close doors
promotes their privacy
Call by preferred
and dignity and
name avoid terms
protects their modesty
such as ‘darling’, ‘pet’
Do not talk over the
individual
Individuals and carers
Ensure conversations
can access an area
of personal nature
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that safely provides
privacy
cannot be overheard
Ensure can have
private time with
family, friends or
spiritual, religious
leaders as appropriate
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.
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
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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:
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
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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.
Supporting Care in last days of life
Specific pathways of care may be used in the last days of life. Whichever
pathway is used should serve the same purpose. To:
Provide a plan of anticipated care, to be used within a given period of
time.
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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
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http://www.guardian.co.uk/society/2012/nov/13/importance-open-end-to-life
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
verbally communicate 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 and his Barthel
Score has dropped to less than 3.
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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In this activity the learner is asked to produce a care plan or an account of
the care the gentleman in the scenario would need at end of life. The
learners are free to consider additional information not contained directly in
the scenario but which they feel are relevant but should give reasons for the
decisions they make.
The scenario can also open a wider discussion about caring for individuals
from different cultures.
Questions:
Q. What symptoms can you identify that Levi suffered with?
Previous conditions –COPD –breathlessness
- Arthritis –pain and limited mobility
- Advanced dementia –unable to make own
decisions; communication very limited
Now – Swallowing difficulties leading to weight loss
Becoming bed bound
Reluctant to be moved -? Due to pain
Reduced interaction –withdrawn
Q.
What effect do you think these symptoms had on Levi?
Becoming more dependant on others
Potential to develop other problems due to lack of mobility
Distress due to pain
Q.
What were the signs that Levi was approaching the end of his life?
Increasing frailty
Weight loss due to swallowing difficulties
Withdrawing
Staying in bed
Barthel score dropped to less than 3
Q.
What do you think could have been done to relieve Levi’s symptoms?
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Pain control –due to swallowing difficulties may need different form of
administration eg liquid or via a syringe driver.
Position in bed to relieve breathlessness
Regular observation and reporting of any changes in condition
Comfort by touch (if appropriate) and by spending time with Levi
Meet personal hygiene needs
Reduce risk of pressure sores developing
Mouth care –in view of reduced oral intake and breathlessness that
may cause mouth to dry
Offer food or fluids as tolerated.
Q.
Who else would you need to involve in his care?
GP
District Nurses
Possibly dietitian (though this may have been more appropriate earlier
than in last hours)
Religious leader
Colleagues
Q.
How would you support the nephew?
Informing promptly of changes so he has chance to visit and be with
uncle. If this is not possible ensure he knows he can make contact at
any time. Find out when he wants to be contacted eg during night or at
work if there are any changes
Q.
How would you meet Levi’s spiritual or religious needs?
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Involve a minister from his church
Possibly appropriate music playing
Possibly religious symbols near bed
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
evidence log on page 5 and fill in the page number and type of evidence (eg case
activity.
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Web resources
Various links to assessment tools to support End of Life Care
Activity Sheets
Communication exercise
Providing End of Life Care –lesson plan and power point
Triggers for end of life care for people with dementia.
http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/EOLC-prognosticindicator-guide.pdf
Further Reading
Tips to Help You Recognise and Manage End of Life Symptoms
http://dying.about.com/od/thedyingprocess/tp/Common-Symptoms-At-The-End-OfLife.htm
Death and Dying: Religious Practices Wall Chart: A guide to general principles
http://www.cumbria.gov.uk/elibrary/Content/Internet/536/656/3838485955.pdf
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Activity 6 – Bereavement and Loss
___________________________________________________________________
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.
At the end of this section the learner will be asked to write a reflective piece about
how they have provided support to others after bereavement
This final section addresses support needs after a death has occurred.
The learner is asked to identify who will need support.
There is additional information about types of grief e.g. anticipatory grief, following
a sudden loss, adjustment after acting as an informal carer and complicated grief to
supplement the knowledge gained from looking at models of death and dying
earlier in the module.
The learner is asked to consider their own role in bereavement support.
Links are given to organisations that can support those who are bereaved.
Activity 6: Reflective Account Bereavement and loss
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.
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Make a list of who will need support when an individual dies.
Family
Friends
Other service users
Colleagues
Yourself
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.
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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
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/
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Make some brief notes about what you have learnt.
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 follows.
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:
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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
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
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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
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.
These will be individual to the learner but should reflect the issues
discussed above.
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
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Completed Activity
activity.
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Web resources
People talk about bereavement.
http://www.healthtalkonline.org/Dying_and_bereavement/Caring_for_someone_wit
h_a_terminal_illness/Topic/4184/
Various links to organisations that offer support for those who are bereaved
Support for staff –video clip
http://www.scie.org.uk/socialcaretv/video-player.asp?v=supportingstaff
Activity Sheets
10 key things learnt from the module
Further Reading
http://inctr-palliative-care-handbook.wikidot.com/loss-grief-and-bereavement
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
Emotional and spiritual support for carers. St Christopher’s Hospice. Marie Curie
Cancer Care
http://endoflifecareinformation.stchristophers.org.uk/looking-after108 | P a g e
yourself/emotional-and-spiritual-support
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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Appendix
Continuation sheets for photocopying as required
Glossary of Terms
Template Support Agreement
Lesson Plans
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Continuation Sheets
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Continuation Sheets
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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 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
Person Centred
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.
114 | P a g e
Support Agreement
Learners Name:
Tutor / Assessor:
Unit / Qualification Title:
Date:
Due to the sensitive nature of End of Life (EOL) care, topics may be covered that
can cause upset 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. Before you begin learning activities, spend some time with your Tutor
/ Assessor to complete the boxes below:
Lone study – Identify support networks (these could be friends, family, colleagues) if
you are upset by topics:
One to one – Outline how you would like to be supported if you are upset by topics:
Work based learning- Identify a mentor or supervisor to whom you can go if you are
upset by topics at work:
Class room based learning - Outline how you would like to be supported if you are
upset by topics (take in to account that your tutor / assessor will not be able to leave
the classroom):
115 | P a g e

UNIT 301: Understand How to Provide Support When Working in

Transcription

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