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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 Content Page

Table of the learning outcomes and assessment criteria

5

Section 1

Introduction to the unit:

Introduction to the unit and the activities

What types of evidence are acceptable for each learning outcome

8

Section 2

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

Continuation sheets for photocopying as required

Glossary of Terms

Template Support Agreement

Lesson Plans

111

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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 e-learning 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)

Evidence Type

Page No Type of evidence presented

1. Understand current approaches to end of life care

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. Understand an individual’s response to their anticipated death

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.




Evidence Type


3. Understand factors regarding communication for those involved in end of life care

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. Understand how to support those involved in end of life care situations

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.




Evidence Type


5. Understand how symptoms might be identified in end of life care

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. Understand advance care planning

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:

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!

Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 4). Those highlighted green are the ones you will cover when you have successfully completed it.

1.1 1.2 1.3 1.4

2.1 2.2 2.3 2.4 2.5

3.1 3.2 3.3 3.4

4.1 4.2 4.3 4.4

Assessment Method: Reflective account Assessment Type: Knowledge

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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.

http://www.endoflifecareforall.org.uk/

http://www.e-lfh.org.uk/projects/end-of-life-care/access-the-e-learning/

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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 Explanation Suitable for

evidencing Competence

Suitable for evidencing Knowledge

Direct observation of you by assessor

You will be observed by your assessor carrying out your everyday work activities in your learning environment

YES YES

Professional discussion

You will take part in a pre-planned and in-depth discussion with your assessor

YES YES

Expert Witness evidence

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

YES YES

Work products A work product is evidence used in your work setting and produced, or contributed to, by you. For example, care plans, daily diaries, assessments

YES YES

Reflective diary An on-going record of events produced by you that take place relating to your work, including evaluation and reflection

YES YES

Reflective statement A record of events, produced by you, that relate to an event that happened in your learning environment, including evaluation and reflection

YES YES

Written and pictorial information

Written answers and completed activities set by your tutor or assessor

NO YES

A scenario or case study

Written or verbal account of how you would respond to specific events set down by your tutor / assessor

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

___________________________________________________________________ Learning outcomes and assessment criteria 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 Assessment Type: Knowledge

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)

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.

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)

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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.

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.

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.

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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.

Individual at the end of life

Government Strategy

Standards laid down by authorities that monitor care

Local policy drivers

The people who are supplying the care

Societies views

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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:

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. Discussions about future care 2. Assessment care planning and review 3. Co-ordination of care 4. Delivery of high quality services in different settings 5. Care in the last days of life 6. Care after death.

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.

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The following is known as the Six Step EOL care pathway

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.

Step 1

Discussion as EOL approaches To increase the identification of people approaching the end of life and promote discussions about their end of life care wishes

Step 2 Advance Care Planning To ensure everybody at EOL had an individual care plan to assess their needs and preferences. This is known as Advance Care Planning

Step 3

Step 4

Step 5

Step 6

To deliver a high quality service 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

To provide care after death To ensure dignity after death, this step includes care of the body and supporting family and carers at this difficult time

Care in the last few days of life. Managing EOL symptoms of pain, breathlessness, anxiety, nausea or constipation

Co-ordinated care at EOL To promote EOL registers and teamwork so that individuals get the right services to support them

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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.

http://www.goldstandardsframework.org.uk/home

http://www.nice.org.uk/media/EE7/57/EoLCFinalQS.pdf

http://www.cqc.org.uk/

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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. Discussions 2. Assessment care planning and review 3. Coordination of care 4. Delivery of high quality services in different settings 5. Care in the last days of life 6. 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

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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?

Is there anything missing that would help to provide high quality EOL care?

Is there anything you would like to change?

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.

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

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.

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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:

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,

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.

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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.

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/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.

This is known as working within your sphere of influence.

http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_101684.pdf







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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/file/136431/End_of_life_strategy.pdf







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Activity 2 – What about me and those I work with? ___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 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 and pictorial information Assessment Type: Knowledge

Tutor/Assessor Guidance:

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.

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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?

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.

Talk to individual Suggest seeks support and offer ideas of support possibly including seeing G.P Possibly talk to manager – confidentially asking the individual

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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?

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?

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.

Examples are: Family and friends Other residents Colleagues Learner themself Spending time Informing everyone concerned Letting people share memories

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Q. You are talking to the relatives of someone who has just died when

you start to cry. How do you feel? Do you think it is ok to show your emotions?

The scenarios above look at dealing with a situation as it arises but there are also on-going sources of support. These are both work related and the ways we find for ourselves to feel supported in our private lives. Organisational support

Supervision

Group sessions

Counselling services

Knowing who to approach –manager/mentor Identify what support is available in your work place –it may include some or all of the above or there may be other ways support is provided to staff in your work area. State how you think these sources support staff and what else could be done to offer good support to staff.

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.

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.

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Personal This section will be individual to you. Here you are asked to identify what helps you personally to continue in the work you do. This should include your coping strategies; what you do on the inside and the outside, for example reflecting on dealing with death while listening to music might be something you do internally but you might also play sport as an external of way of coping. This about who gives you support:

At work

Away from work What is important to you? How do you relax and renew?

Reflective Account Think about when the death occurred of an individual you cared for in your work role or of someone known to you. Think about your internal and external coping strategies. Reflect on how you felt, what support was available, whether you sought support and how it helped you to cope. You may also like to reflect on what support you would find helpful in the future. Then think about others who cared for this individual. Reflect on what support they needed and what you were able to do to help.

Further Reading:

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.

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Web resources

Activity Sheets

Power Points/ Lesson Plans ‘What about me and those I work with’ Lesson plan and PowerPoint


Further Reading

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Activity 3 – Reactions to Death


1.1 1.2 1.3

2.1 2.2 2.3 2.4

3.1 3.2 3.3 3.4

4.1 4.2 4.3 4.4

5.1 5.2 5.3 5.4

6.1 6.2 6.3 6.4

Assessment Method: Written piece and application of knowledge Assessment Type: Knowledge

Activity 3: Understanding individual reactions to anticipated death


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.

Tutor/Assessor Guidance: 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.

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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

INDIVIDUAL AT END

OF LIFE

Loss of their future hopes,

wishes, dreams, family goals

Loss of finances and

material things Loss of job

role, role in the family,

role in community, relationships with friends

Loss of Self Image

weight loss, weight gain,

hair loss, wounds

Loss of intimacy or sexual fulfilment,

physical relationship changes, loss of

libido, loss of energy, depression

Loss of privacy with strangers

involved in personal care

Loss of independence with mobility,

eating, hygiene etc.

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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

http://www.healthtalkonline.org/Dying_and_bereavement/Living_with_Dying/Topic/1186/


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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’

http://www.healthtalkonline.org/Dying_and_bereavement/Living_with_Dying

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‘Says that death is part of life’ Write down a few words to describe how you think about death and dying.

You views are individual to you. You may agree with some of the people talking on the videos but not all. Think about and write down how you would support someone with views that are different from your own.

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.

This is a good opportunity to talk about non-judgemental 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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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.

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.

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1. To accept the reality of loss 2. To experience and work through the pain of grief 3. To adjust to an environment in which the dead person is missing 4. 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

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.

Loss – orientation Grief work

Yearning / Crying Intrusive thoughts

& feelings Reminiscing Holding on to

‘bonds’

Restoration – orientation Avoidance

Denial Distraction

Doing other things Doing new things Breaking ‘bonds’

http://www.nhsglos.nhs.uk/

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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?

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.

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.

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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.

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

Examples may include: Relatives Friends The learner Other social care workers Other professionals Cultural or religious leaders Others who hold similar views or beliefs

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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.

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)

http://www.helpthehospices.org.uk/clip/index.htm

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What happens after death? 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?

Difficult questions

I might be asked

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Think about and write down some of the non –verbal clues that indicate an individual at EOL has concerns.

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.

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

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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 Examples may include: 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.

http://www.helpthehospices.org.uk/clip/pn/pn-1/index.htm

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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.

What might be troubling her about the future?

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.

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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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’

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.

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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?

Who else might you want to involve in supporting Mia?

Who else might need support and what would your role be in this?

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

As above. Also family and friends Other colleagues Spiritual, religious or cultural leaders as appropriate. Other professionals

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&page_id=78 http://www.support4change.com/index.php?option=com_content&view=article&id=256&Itemid=246 http://www.dimensionsofculture.com/2010/11/cultural-aspects-of-death-and-dying/

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 (eg case study or reflective account) for the assessment criteria you have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.

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=78


http://www.support4change.com/index.php?option=com_content&view=article&id=256&Itemid=246


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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

Power Points/ Lesson Plans Theories and models of death and dying Lesson plan and PowerPoint

E- learning Resources 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=78 http://www.support4change.com/index.php?option=com_content&view=article&id=256&Itemid=246 http://www.dimensionsofculture.com/2010/11/cultural-aspects-of-death-and-dying/



http://www.healthtalkonline.org/Dying_and_bereavement/Living_with_Dying

http://www.helpthehospices.org.uk/clip/index.htm

http://www.helpthehospices.org.uk/clip/pn/pn-1/index.htm

http://grief.com/the-five-stages-of-grief/

http://www.lindamorrell.com/?page_id=179





http://www.dimensionsofculture.com/2010/11/cultural-aspects-of-death-and-dying/

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Activity 4 – Making Future Plans


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 quiz Assessment Type: Knowledge

Tutor/Assessor Guidance: 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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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 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.

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

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.

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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/Promo%20materials/Leaflet_6_Web.pdf And http://www.dyingmatters.org/sites/default/files/user/Planning_for_your_future_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

http://www.dyingmatters.org/sites/default/files/user/images/Resources/Promo%20materials/Leaflet_6_Web.pdf


http://www.dyingmatters.org/sites/default/files/user/Planning_for_your_future_care_FINAL_010212.pdf


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How the plan is recorded will vary in different workplaces. You may have documents you use in your workplace –if you are not sure you will need to look for them and make sure you are familiar with what is being asked. Sometimes these documents will have different names such as ‘Preferred Priorities for Care’ rather than Advance Care Plan. If you are not able to do this don’t worry just complete the following exercises with everyone else. One important thing to remember is that advance care plans can only be made if an individual has the capacity to make decisions for themselves. Often advance care planning is only considered when an individual knows that death is imminent. However, even though everyone expects to live a long life this is not always so due to illness or accidents. It is important for everyone to think about what plans and wishes they would want in place. Making these plans and ensuring they are recorded means that relatives and friends are not faced with trying to make decisions in an emergency or at an emotionally difficult time and trying to guess what the individual would have wanted if they could make their own decisions. Thinking about plans for the EOL does not bring death any closer. Making plans for how an individual wishes to be cared for in the future helps them to feel they are still in control as their illness progresses. The following exercise asks you to think about what is important to you and what your wishes would be if you could not make your own decisions. Be prepared to discuss the document and how you felt about completing it with your tutor/assessor. Complete an Advance Care Plan that shows what your future wishes are. You may have your local form to use or may prefer to use the example given in your resource file. Place a copy of your completed ACP in your portfolio.

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’?

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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/Introduction.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/resources-search/publications/the-differences-between-general-care-planning-and-decisions-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?”

http://www.scie.org.uk/publications/dementia/decisions/decisions.asp

http://www.endoflifecare.nhs.uk/search-resources/resources-search/publications/the-differences-between-general-care-planning-and-decisions-made-in-advance.aspx



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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)

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’

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.

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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. Need for privacy

2. Individual has capacity to make own decisions

3. Not everyone will want to make plans and respect this

4. People can tire quickly and may need to have several shorter

conversations

5. 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_Planning_guide.pdf And various other sites including dying matters

Further Reading


http://www.endoflifecare.nhs.uk/assets/downloads/pubs_Advance_Care_Planning_guide.pdf

http://www.endoflifecare.nhs.uk/assets/downloads/pubs_Advance_Care_Planning_guide.pdf

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Web resources ‘I didn’t want that’


Activity Sheets Quiz questions

Power Points/ Lesson Plans

E- learning Resources Advance Care Plans http://www.dyingmatters.org/sites/default/files/user/images/Resources/Promo%20materials/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


Differences between advance care plans and general care plans












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Activity 5 – Providing Care at EOL


1.1 1.2 1.3

2.1 2.2 2.3 2.4

3.1 3.2 3.3 3.4

4.1 4.2 4.3 4.4

5.1 5.2 5.3 5.4

6.1 6.2 6.3 6.4

Assessment Method: Reflection on own practice in real work environment Assessment Type: Knowledge

Tutor/Assessor Guidance: 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.

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.

I’m not afraid of dying, I just don’t want to be there when it happens”

Woody Allen

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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: Care in the last days of life

Recognising EOL

Individual

Recognising EOL Recognising approaching death

Tools to support assessment

Communication

Relieving symptoms

Holistic assessment

Main symptoms at the 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-prognostic-indicator-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

http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/EOLC-prognostic-indicator-guide.pdf

http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/EOLC-prognostic-indicator-guide.pdf

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.

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

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

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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-of-hours

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/ religious needs is not shared

Beliefs and wishes may not be met. 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.

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

“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)

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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.

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

• 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)

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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

What I can do to meet this benchmark for an individual at End of Life

Attitudes and behaviour

Individuals feel that they matter all the time

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

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

Personal boundaries and space

Individuals personal space is actively promoted by all staff

Privacy Knocking before entering room In community remembering you are a guest in someone’s home Time given to be alone or with family

Communicating with staff and individuals

Communication between staff and individuals takes place in a manner which respects their individuality

Language used eg preferred name Not talking over individual Not shouting across room especially about personal issues Minimising barriers to communication Not using jargon Taking time to be understood

Privacy of individuals -confidentiality of patient information

Individual information is shared to enable care, with their consent

Ensure consent gained Ensure information documented and available to appropriate others particularly out -of -hours, paramedics

Privacy, dignity and modesty

Individuals care actively promotes their privacy and dignity and protects their modesty

Close doors Call by preferred name avoid terms such as ‘darling’, ‘pet’ Do not talk over the individual

Availability of an area for complete privacy

Individuals and carers can access an area

Ensure conversations 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

http://www.apsoc.org.au/PDF/Publications/4_Abbey_Pain_Scale.pdf

http://www.bapen.org.uk/pdfs/must/must_full.pdf

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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.

http://www.dundee.ac.uk/medther/Stroke/Scales/barthel.htm

http://www.dundee.ac.uk/medther/Stroke/Scales/barthel.htm

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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 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

In order to separate the fact from the fiction read

The FAQ LCP fact sheet http://www.endoflifecare.nhs.uk/media/1866867/Liverpool_Care_Pathway___FAQ_23_August_2012.pdf

Kate Granger’s (2012) article. The Liverpool Care Pathway for the Dying Patient improves the end of life

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.

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

http://www.rlbuht.nhs.uk/Pages/RoyalHome.aspx

http://www.rlbuht.nhs.uk/Pages/RoyalHome.aspx

http://www.mcpcil.org.uk/

http://www.mariecurie.org.uk/en-gb/healthcare-professionals/innovation/liverpool-care-pathway/

http://www.endoflifecare.nhs.uk/media/1866867/Liverpool_Care_Pathway___FAQ_23_August_2012.pdf

http://www.endoflifecare.nhs.uk/media/1866867/Liverpool_Care_Pathway___FAQ_23_August_2012.pdf

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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-The-End-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.

http://www.guardian.co.uk/society/2012/nov/13/importance-open-end-to-life

http://dying.about.com/od/thedyingprocess/tp/Common-Symptoms-At-The-End-Of-Life.htm


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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.htm

http://www.onespace.org.uk/your-roots/west-indian-culture

http://www.movinghere.org.uk/galleries/histories/caribbean/culture/culture.htm

http://www.movinghere.org.uk/galleries/histories/caribbean/culture/culture.htm

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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?

Q. What effect do you think these symptoms had on Levi?

Q. What were the signs that Levi was approaching the end of his life?

Q. What do you think could have been done to relieve Levi’s symptoms?

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

Increasing frailty Weight loss due to swallowing difficulties Withdrawing Staying in bed Barthel score dropped to less than 3

Becoming more dependant on others Potential to develop other problems due to lack of mobility Distress due to pain

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Q. Who else would you need to involve in his care?

Q. How would you support the nephew?

Q. How would you meet Levi’s spiritual or religious needs?

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

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.

GP

District Nurses

Possibly dietitian (though this may have been more appropriate earlier than in last hours)

Religious leader

Colleagues

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Further reading

Death and Dying: Religious Practices Wall Chart: A guide to general principles http://www.cumbria.gov.uk/elibrary/Content/Internet/536/656/3838485955.pdf

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 (eg case study or reflective account) for the assessment criteria you have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.

Involve a minister from his church Possibly appropriate music playing Possibly religious symbols near bed

http://www.cumbria.gov.uk/elibrary/Content/Internet/536/656/3838485955.pdf


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Web resources Various links to assessment tools to support End of Life Care

Activity Sheets Communication exercise

Power Points/ Lesson Plans Providing End of Life Care –lesson plan and power point

E- learning Resources Triggers for end of life care for people with dementia. http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/EOLC-prognostic-indicator-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-Of-Life.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


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: Research and identify sources of support. Assessment Type: Knowledge

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.

Tutor/Assessor Guidance: 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.

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Make a list of who will need support when an individual dies.

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-and-bereavement 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.

Family Friends Other service users Colleagues Yourself

http://inctr-palliative-care-handbook.wikidot.com/loss-grief-and-bereavement


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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_someone_with_a_terminal_illness/Topic/4184/

http://www.healthtalkonline.org/Dying_and_bereavement/Caring_for_someone_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-CARERS-FAMILIES/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/patients-carers/Talking_to_Children_when_someone_is_dying_%28a_leaflet_for_par.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

http://www.macmillan.org.uk/Cancerinformation/Endoflife/Afterdeath.aspx

http://www.mariecurie.org.uk/Documents/PATIENTS-CARERS-FAMILIES/Updated-pdf/bereavement.pdf

http://www.mariecurie.org.uk/Documents/PATIENTS-CARERS-FAMILIES/Updated-pdf/bereavement.pdf

http://www.crusebereavementcare.org.uk/Children.html

http://www.childbereavement.org.uk/

http://www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/patients-carers/Talking_to_Children_when_someone_is_dying_%28a_leaflet_for_par.pdf



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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-after-yourself/emotional-and-spiritual-support

http://endoflifecareinformation.stchristophers.org.uk/looking-after-yourself/emotional-and-spiritual-support


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Web resources People talk about bereavement. http://www.healthtalkonline.org/Dying_and_bereavement/Caring_for_someone_with_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

Power Points/ Lesson Plans


Further Reading http://inctr-palliative-care-handbook.wikidot.com/loss-grief-and-bereavement

Useful information:

What to do when some dies – Dying Matters


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-after-yourself/emotional-and-spiritual-support









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Summary The good news is that you have nearly completed this unit! You have considered how to assess and support an individual at the end of life. As a last task, repeat the assessment you completed at the start of the unit to see if your confidence has increased and discuss this with your tutor/assessor.

Confidence level

1 2 3 4 5

Understand local pathways for EOL care

Understand National guidance for EOL care

Understand how quality of EOL care is monitored

Support self and others working in EOL care

Support individuals to plan for EOL

Supporting individuals at the EOL

Supporting others after a death has occurred

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CONGRATULATIONS! You have now undertaken all the activities in this unit. You now need to meet with your tutor/assessor – to discuss how you might present these completed activities as evidence towards meeting the unit learning outcomes.

1.1 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

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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 Definition

End of Life Considered to be the last 12 months that a person is expected to live

Assessment Gathering information about a person’s needs and how an illness is affecting their ability to live their normal lives

Factors The things, events or circumstances which will affect something eg what is affecting an individual’s ability to cope with an illness

Holistic Holistic means considering care or assessment from the physical, psychological, environmental and spiritual needs of an individual. This enables people to be treated as whole human beings and the impact of the illness on their quality of life is also considered

Person Centred Person centred care is providing care that is responsive to individual personal preferences, needs and values and assuring that the individual’s values guide all clinical decisions

National End of Life Care Programme

This is a national programme funded by the NHS which works across health and social care in England to improve end of life care and support people to live and die well

Best Interest Decision This has to occur if someone does not have the mental capacity (see below) to make a legal, healthcare, welfare or financial decision for themselves. This is one of the principles of the Mental Capacity Act. The decision can only be made after an assessment has deemed the individual does not have capacity. Strict principles and codes of practice should be followed to carry out the assessment and to make the best interest decision, these are set out in the Mental Capacity Act

A ‘good death’ 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.

Informed consent

When an individual gives permission to have an assessment, treatment or procedure with full knowledge of the risks involved, probable consequences and the alternatives.

Mental Capacity The cognitive ability (see above) of an individual to make decisions that may have legal consequences for themselves and/or for others affected by the decision. In particular these decisions involve their health care, welfare and finances. An assessment must be carried out to determine mental capacity.

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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):