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UNIT 306:
Supporting individuals during the last days of life
Tutor’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 Judith Talbot BSc. (Hons), RGN, PGCert Ed St Luke’s Hospice Plymouth Glenda Cooper BSc; PGCE; RGN/RSCN; FHEA 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
4
Section 1
Introduction to the unit:
Introduction to the subject and what the activities are generally about
What types of evidence are acceptable for each Learning criteria
8
Section 2
Activity 1 – What is a 'good death'? (supports learning outcome 1.3)
17
Activity 2 – The final days: Identify, plan and communicate (supports learning outcomes 2.1, 3.3, and 4.1)
28
Activity 3 – Maintaining comfort and dignity (supports learning outcomes 2.2, 2.3, 2.4, 4.2, and 4.3)
41
Activity 4 – The final hours and care after death (supports learning outcomes 2.1, 2.5, 4.2, 5.2, 5.4 and 5.5)
59
Activity 5 – Emotions, feelings and coping (supports learning outcomes 1.1, 1.2, 5.5, 6.1 and 6.2)
70
Activity 6 – Was it a good death? (supports learning outcomes 4.1)
78
Activity 7 - Reflective Case study – the last days of life (supports learning outcomes 2.1, 2.3, 2.4, 2.5, 3.1, 3.2, 3.3, 3.4, 4.1, 4.2, 4.3, 5.1, 5.2, 5.3, 5.4, 5.5, 6.1 and 6.2)
83
Glossary of terms
92
Continuation sheets (for photocopying)
94
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The purpose of this tutor handbook
This handbook illustrates the learners’ activities and resources and provides you with the learning points and answers for each activity contained in the learner’s workbook. Suggested answers have been written in red. It is important to note that some questions ask the learner for their own views and opinions, in these cases there are no right or wrong answers.
After each activity there is resource guide. This is provided to 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 learner’s 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 1: Learning Outcomes and Assessment Methods
EOL 306: Support individuals during the last days of life
Unit level 4 Credit value 5 Study/activity Hours 33
Unit aim The purpose of this unit is to assess the learner’s knowledge and understanding of how to support individuals during the last days of life.
Learning outcomes The learner will:
Assessment criteria The learner can:
Own evidence log (optional)
Assessment Type
Page No
Type of evidence presented
1. Understand the impact of the last days of life on the individual and others
1.1 Describe the possible psychological aspects of the dying phase for the individual and others
Knowledge
1.2 Explain the impact of the last days of life on the relationships between individuals and others
Knowledge
2. Understand how to respond to common symptoms in the last days of life
2.1 Describe the common signs of approaching death
Knowledge
2.2 Explain how to minimise the distress of symptoms related to the last days of life
Knowledge
2.3 Describe appropriate comfort measures in the final hours of life
Knowledge
2.4 Explain the circumstances when life-prolonging treatment can be stopped or withheld
Knowledge
2.5 Identify the signs that death has occurred
Knowledge
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Learning outcomes The learner will:
Assessment criteria The learner can:
Own evidence log (optional)
Assessment Type
Page No
Type of evidence presented
3. Be able to support individuals and others during the last days of life
3.1 Demonstrate a range of ways to enhance an individual’s wellbeing during the last days of life
Competence
3.2 Work in partnership with others to support the individual’s well-being during the last days of life
Competence
3.3 Describe how to use a range of tools for end of life care according to agreed ways of working
Knowledge
3.4 Support others to understand the process following death according to agreed ways of working
Competence
4. Be able to respond to changing needs of an individual during the last days of life
4.1 Explain the importance of following the individual’s Advance Care Plan in the last days of life
Knowledge
4.2 Record the changing needs of the individual during the last days of life according to agreed ways of working
Competence
4.3 Support the individual when their condition changes according to agreed ways of working
Competence
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Learning outcomes The learner will:
Assessment criteria The learner can:
Own evidence log (optional)
Assessment Type
Page No
Type of evidence presented
5. Be able to work according to national guidelines, local policies and procedures, taking into account preferences and wishes after the death of the individual
5.1 Implement actions immediately after a death the respect the individual’s preferences and wishes according to agreed ways of working
Competence
5.2 Provide care for the individual according to national guidelines, local policies and procedures
Competence
5.3 Explain the importance of following the Advance Care Plan to implement the individual’s preferences and wishes for their after-death care
Knowledge
5.4 Follow agreed ways of working relating to prevention and control of infection when caring for and transferring a deceased person
Competence
5.5 Explain ways to support others immediately following the death of a close relative or friend
Knowledge
6. Be able to manage own feelings in relation to an individual’s dying or death
6.1 Identify ways to manage own feelings in relation to an individual’s death
Knowledge
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6.2 Use support systems to manage own feelings in relation to an individual’s death
Competence
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Section 1: Introduction to EOL Unit 306
General Introduction Over half a million people die in the United Kingdom each year (Department of Health, 2008). In the majority of cases, individuals will be recognised as being in the last days of life. The National End of Life Care Strategy (2008) identified the necessity for those who are involved in delivering care during the last few days of life to receive appropriate training. This helps to ensure the ultimate goal of ensuring a ‘good death’ is achieved. The 306 unit allows you to develop your knowledge and competence of care and support for individuals and their relatives or close friends in the last days of life. It will assist you to identify when an individual is entering the last days of life and how you contribute to appropriate care as part of the wider team. Learning Support Due to the sensitive nature of End of Life (EOL) care, sometimes learners can become upset whilst completing the learning activity. For example you may be asked to consider your thoughts about your own death, or watch video clips that include the views of people who are actually dying. At your introductory session your tutor/assessor will ask you to complete a support agreement which will identify what you should do if you should become upset whilst undertaking any of the following learning activities.
Lone study – The tutor/assessor will ask you to identify support networks (these could be friends, family, colleagues) if you should become upset.
One to one – The tutor/assessor will ask how you would like to be supported by your tutor/assessor should you become upset.
Work based learning- The tutor/assessor will ask you to identify a mentor/or supervisor to whom you could go if you became upset at work
Classroom based learning - The tutor/assessor will ask how you would like to be supported should you become upset during classroom sessions. The tutor/assessor will not be able to leave the rest of the class, so you may wish to nominate a classroom buddy who could leave the classroom with you or identify a quiet place where you can go to be alone and have a cup of tea. This will be your decision and based on the facilities available.
Providing good EOL care can be one of the most rewarding caring experiences you can have. It is a privilege to know that you have cared for someone as they have taken their last breath in the world and that you have been part of their end of life journey. It is often a comfort to know that you have helped someone meet their EOL wishes and they have had a comfortable, dignified death. How you care for someone at end of life can remain with relatives and loved ones for a long time and you only have one chance to get it right. This is a big responsibility and so it is really important that you take the learning activities seriously and that you also ensure that you learn at your own pace, to fully reflect and absorb the new EOL knowledge and skills you will be developing throughout this unit.
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Learning Activities As everybody has different ways of learning new information, this workbook contains a range of learning activities, which will assist you in meeting the learning outcomes for the unit. Table 2 shows you the type of activities you may be asked to complete.
Table 2: Type of learning activities and symbols
Activity Symbol Explanation
This symbol means you will need to access the internet *
This symbol means you will be reading something
This symbol means you will be asked to talk about something with friends, colleagues, your tutor or assessor
This symbol means you will be asked to think about something and you may be required to write your thoughts down
This symbol means you will be asked to watch a clip from a movie, TV programme or from the Internet eg youtube film clip *
This symbol means you will be asked to write something in a workbook or a worksheet or even provide examples of your work with a service user eg a plan you have written
This symbol means you 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.
For each activity, learners will see a clock symbol which 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!
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Each activity will signpost learners to a range of resources to support their learning and where appropriate learning materials will be provided eg an information leaflet or a section of a website for them to read. If they are not in the Learner 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! 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.
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
2.1 2.2 2.3 2.4 2.5
3.1 3.2 3.3 3.4
4.1 4.2 4.3
5.1 5.2 5.3 5.4 5.5
6.1 6.2
Assessment Method: Reflective account Assessment Type: Knowledge
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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 e.g. photographs or documents with their details on.
Portfolio of Evidence of Learning We have recommended that learners keep a portfolio to record all the learning they have collected for this unit. This portfolio will demonstrate their understanding on the subject and will help you assess how the learner is meeting the relevant learning outcomes.
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End of Life Care for All (e-ELCA)
End of Life Care for All (e-ELCA) is an e-learning platform from the Department of Health and e-Learning for Healthcare (e-LfH) in partnership with the Association for Palliative Medicine of Great Britain and Ireland to support the implementation of the Department of Health's National End of Life Care Strategy (July 2008).
The e-learning platform is aimed at health and social care staff working in end of life care. The e-learning enhances the training and education of these staff, increasing their confidence and competence to ensure well informed, high quality care is delivered to people at the end of their life.
There are over 150 highly interactive sessions of e learning within e-ELCA. These are arranged in 4 core modules:
Advance Care Planning
Assessment
Communications Skills
Symptom Management, comfort and wellbeing Also, there are 3 additional modules in social care, bereavement and spirituality.
All of these sessions are freely available to NHS staff, social care staff who work in an organisation registered with the Skills for Care National Minimum Data Set (NMDS) or staff who work in a hospice. Staff who do not meet these criteria can register at a cost of £199. There are twelve sessions which are freely available to everyone, including volunteers and clerical and administrative staff on an open access website: www.endoflifecareforall.org.uk. For further details see 'Access the e-learning'. This is an additional resource and not mandatory for this unit as it may not be freely available to every learner.
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Providing the right evidence In their workbooks learners are informed that it is important that they provide the right type of evidence for the outcome they are trying to achieve. Remember there are 2 types of evidence:
a. Competence / Skill – This is where they need to demonstrate something about their practice.
b. Knowledge – This is where they need to demonstrate that they have learned and understood some new information.
Table 3 shows them the type of evidence that is acceptable for the type of outcome.
Table 3: Suitable Evidence Evidence methods 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 handbooks. 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 how to support individuals during the last days of life. 1 being not very confident and 5 very confident. There is a second, identical table, at the end of the handbook for them to complete again.
Confidence level
1 2 3 4 5
Understanding of the term a ‘good death’
Recognising when an individual is now in the last days of life
How to maintain comfort, and dignity, in the last days of life
Understanding of symptoms which may present in the last days of life
Knowledge of support for relatives, or close friends, of a dying individual.
Identifying an individual has died and the immediate procedure to take following death.
Knowing who can support you and understanding how to care for yourself.
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Section 2: Activities
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Activity 1 – What is a good death?
___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 5). Those highlighted green are the ones learners will cover when they have successfully completed it.
1.1 1.2
2.1 2.2 2.3 2.4 2.5
3.1 3.2 3.3 3.4
4.1 4.2 4.3
5.1 5.2 5.3 5.4 5.5
6.1 6.2
Assessment Method: Written tasks and research Assessment Type: Knowledge
Tutor/Assessor Guidance: This learning activity allows learners to develop an understanding of what a ‘good death’ is and what it means to different individuals. This helps develop their knowledge and understanding of what is needed to support individuals in the last days of life. They will learn the variety of care settings where individuals may be cared for in the last days of life and why they should receive equitable care to ensure a ‘good death’ is achieved They will also gain knowledge of the national strategy and national standards that guide health and social care workers in the standards of care expected. They will start to build on their understanding of the consequences of a ‘good death’ not being achieved which will be looked at in a later learning activity.
Activity 1: – What is a ‘good death’?
About 4 hours
When caring for individuals who are in the last days of life, relatives, close friends, health and social care workers strive to ensure the individual has a ‘good death’- but what does this term mean? For most individuals this will mean they want a comfortable and dignified death. However, does ‘comfortable’ and ‘dignified’ mean the same thing to every individual? Write some thoughts about the following questions.
Are the wishes and needs of each dying individual the same? The learner should identify that the wishes and needs of each dying individual will be different.
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Now we need to define what is meant by the key terms. Describe what the words ‘comfortable’ and ‘dignified’ mean to you:
Now look up the actual definitions in a dictionary - did you get them right?
Descriptions provided by learners will be subjective as this asks for them to provide their own meaning. Examples of dictionary definitions: Comfortable: - “being in a state of physical or mental comfort; contented and undisturbed; at ease” (http://www.thefreedictionary.com) Dignified: - The way “people feel, think and behave in relation to the worth or value of themselves and others”. (The Royal College of Nursing’s definition of dignity. http://www.rcn.org.uk)
How do we know what individuals want?
They may have told people in advance, when they were well, or when they knew they were going to die in the near future
They may have documented their wishes and needs.
Some learners may already be aware of Advance Care Plans (discussed in next learning activity)
Is exactly the same support, care, equipment and even place of care necessary to ensure all dying individuals achieve a ‘good death’? Learners should start to recognise there will be a variation in all of the above to ensure a ‘good death’ depending on the individual
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The National End of Life Care Strategy was produced by the Department of Health in 2008. Its aim is to ensure all adults, when dying, have access to high quality care, in all care settings. It also provides findings of what, for many individuals in England, would constitute a ‘good death’. Access the document on the following link: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_086437.pdf Look at page 1 of this document and then answer the following questions: 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 Where could care in the last days of life be delivered? Place each care setting next to the appropriate number: 1 = where most individuals die, 5 = where least number of individuals die.
According to the End of Life Care Strategy (2008) is the care setting where most individuals die the same as where most individuals say they would like to die?
1. Hospital
2. Home
3. Care Home
4. Hospice
5. Elsewhere
No – most people say they would like to die at home.
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Later on this activity will ask you to give reasons why individuals may not be cared for in the care setting of their choice. Now listen to stories from individuals talking about their wishes and concerns when dying including where they would like to be cared for. You will be able to start to:
Build a picture of what a ‘good death’ means to different people.
Develop an understanding of how physical, psychological, social, faith, cultural and spiritual factors affect the dying individual and those involved in their care.
Make notes and refer back to these as you continue with other learning activities. Now click on the following links: Healthtalkonline.org Living with dying: where people want to die http://www.healthtalkonline.org/Living_with_dying/Living_with_Dying/Topic/1204/ Healthtalkonline.org Living with dying: People’s stories http://www.healthtalkonline.org/Dying_and_bereavement/Living_with_Dying/People/Stories Motor neurone disease. Thoughts about death, dying and bereavement. http://www.healthtalkonline.org/nerves_and_brain/motorneuronedisease/Topic/3452/ If you cannot access the internet then make notes on a radio or television programme, newspaper or magazine article where people are talking about dying. Make some notes about what you learn from the clips and your research in the space (use more paper if you need it).
Notes:
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Now consider what you would want for yourself when in the last days of life.
What, for you, would be a ‘good death’?
What would you want to ensure comfort and dignity?
What would you not want?
Where would you want to be cared for?
How would others know what you wanted?
Who would you want delivering your care?
How would care you wanted, or needed, be communicated to these people?
What extra resources do you think would be needed? Now consider your relatives / friends / colleagues.
Do you think they would want the same as you?
Now ask a relative, a friend, and a colleague. Compare what you
thought and what they said :
- Are there any differences?
Learners answers will be subjective. They should show knowledge of different individuals wanting different things. eg place where they would like to receive care when dying; people they would like present; burial or cremation; place of burial / scattering of ashes.
These answers will be subjective as it asks the learner what they would like.
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- Are there any surprises?
Consider the following: An individual who is being supported for end of life care dies on the floor. Is this a comfortable and dignified death? Give reasons for your answer: You will have the opportunity to explore your answer later in this activity. Now look at the following national document: Information for adults who use NHS end of life care services and their families and carers. (2011) http://www.nice.org.uk/nicemedia/live/13845/60321/60321.pdf Compare what you, your relatives, friends, and colleagues would want with the quality standards in this document. Do you feel your needs and wishes are covered by these standards? Would this help ensure a ‘good death’ is achieved? Now look at the following: Death and Dying: Religious Practices Wall Chart: A guide to general principles http://www.cumbria.gov.uk/elibrary/Content/Internet/536/656/3838485955.pdf Alternatively you may look at a resource on faiths and cultures in your working area. This will assist you with understanding what ‘dignified’ means to different faiths, and cultures, when dying.
Learners answers will be subjective.
The answer will be subjective. Learners should be identifying the difference between; - an individual dying on the floor at their request eg to meet faith, cultural, spiritual needs. - an individual dying on the floor because they fell out of bed. Learners should be starting to identify what constitutes comfort and dignity to help achieve a ‘good death’
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After looking at the resource answer the following which links to the earlier question: Do you think it is always possible for individuals to die where they would like to? Provide reasons why it may not be possible. Are the wants/needs/wishes of all dying individuals achievable in all care settings? Can you provide an example if you think they are not.
The answers provided by learners may be subjective but they should show an understanding of the necessity to try and provide support to meet national standards.
The learner should say “no”. Reasons may be:
- Lives alone so no one to care for them at home - Relatives cannot face caring for loved one when dying - Faith, cultural, spiritual rituals cannot be performed in all
settings
The answer should be “No” Examples may include: - Not being able to have a pet close by if cared for in hospital - Not being allowed lit candles because of fire regulations - Not always being in a peaceful environment - Immediate access to healthcare workers.
Individuals of which faith, or culture, may request to be placed on the floor to die? - Hindus
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How would the wants/needs/wishes of all the individuals you have listened and spoken to be known when they are in the last days of life?
Locate your organisation’s end of life care policy and consider how it will ensure individuals are supported to achieve a ’good death.’ If your organisation does not have an EOL policy click on the link below to look at an example: http://www.endoflifecumbriaandlancashire.org.uk/CubeCore/.uploads/V1%20Six%20Steps%20Web%20Resources/Induction/7%20End%20of%20life%20care%20policy%20template%20V1%2007092011.pdf You should now be beginning to develop an understanding of the difference in what ‘comfortable’, ‘dignified’ and a ‘good death’ means to different individuals when providing resources, support and care in the last days of life. You are beginning to analyse ways to enhance wellbeing during the last days of life.
- They may say they have told someone eg a relative or close
friend - They may have informally documented or recorded their
wishes. eg placed in a sealed envelope at home or recorded a video.
- They may have formally recorded their wishes eg an Advance Care Plan or an Advance Decision to Refuse Treatment.
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Resources to support learning End of Life Care Strategy, Executive summary. (2008) http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_086437.pdf Information for adults who use NHS end of life care services and their families and carers. (2011) http://www.nice.org.uk/nicemedia/live/13845/60321/60321.pdf Dignity in end of life care. Support sheet 6. National End of Life Care Programme. http://www.endoflifecare.nhs.uk/assets/downloads/supportsheet6_1.pdf
Completed Activity Now learners have completed this activity we recommend they go back to their 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 they have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.
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Activity 1:
Web resources Video clips of individuals talking about their wants, needs and wishes. Healthtalkonline.org Living with dying: where people want to die http://www.healthtalkonline.org/Living_with_dying/Living_with_Dying/Topic/1204/ Healthtalkonline.org Living with dying: People’s stories http://www.healthtalkonline.org/Dying_and_bereavement/Living_with_Dying/People/Stories Motor neurone disease. Thoughts about death, dying and bereavement. http://www.healthtalkonline.org/nerves_and_brain/motorneuronedisease/Topic/3452/
Activity Sheets Individual learning activities in work book Activity and trainers notes: What do individuals want when they die? Access via SCIE Dementia Gateway. Care in the last days of life. Located at bottom of page .”Over to you. A quick activity” May be printed off for lesson activity. http://www.scie.org.uk/publications/dementia/endoflife/last.asp PowerPoints/ Lesson Plans Slide 5 – Power point: Supporting individuals during the last days of life. E- learning Resources www.scie.org.uk -enter ‘scie spirituality’ in serch engine and you will reach Dementia Gateway and information about spiritual care to work through
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Further Reading Information for adults who use NHS end of life care services and their families and carers. (2011). National Institute of Clinical Excellence http://www.nice.org.uk/nicemedia/live/13845/60321/60321.pdf Death and Dying: Religious Practices Wall Chart: A guide to general principles http://www.cumbria.gov.uk/elibrary/Content/Internet/536/656/3838485955.pdf Dying matters. Raising awareness of dying, death and bereavement. http://www.dyingmatters.org/ End of Life Care Strategy, Executive summary. (2008) http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_086437.pdf I Dignity in end of life care. Support sheet 6. National End of Life Care Programme. http://www.endoflifecare.nhs.uk/assets/downloads/supportsheet6_1.pdf RCN’s definition of dignity (Royal College of Nursing). http://www.rcn.org.uk/__data/assets/pdf_file/0003/191730/003298.pdf Planning your future care: a guide (Dying Matters) http://www.dyingmatters.org/sites/default/files/user/Planning_for_your_future_care_FINAL_010212.pdf
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Activity 2 – The Final Days: Identify, plan and communicate
___________________________________________________________________
Learning outcomes and assessment criteria
This activity links to the following learning outcomes and assessment criteria (page 5). Those highlighted green are the ones learners will cover when they have successfully completed it.
1.1 1.2
2.1 2.2 2.3 2.4 2.5
3.1 3.2 3.3 3.4
4.1 4.2 4.3
5.1 5.2 5.3 5.4 5.5
6.1 6.2
Assessment Method: Written tasks and research Assessment Type: Knowledge
Activity 2: The last few days - Identify, plan, communicate.
About 4 hours
Here we look at why is it important to recognise when an individual has reached the last few days of their life and what would be the consequences if nothing different was carried out, or put in place. Would they die with comfort and dignity? The first step is to identify when the individual is entering this stage. For this activity you should reflect on individuals you have already cared for. The following leaflet available on the link below will support your learning: Coping with dying. Understanding the changes which occur before death. http://www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/liverpool-care-pathway/pdfs/Coping_with_Dying_Leaflet_-_April_2010.pdf
Tutor/Assessor Guidance: Identifying when an individual has reached the final days of life is essential to ensure appropriate planning and delivery of care. This helps to ensure the needs, wants and wishes of the individual are considered. It is important communication between all those involved, including the individual and relatives or close friends, is maintained. This learning activity will develop your knowledge and understanding of:
how an individual is identified as entering the last days of life, including physical signs.
the planning of care, including incorporating the wishes of the individual.
the systems and documentation put in place to enhance communication.
key people involved in decision making and delivery of care.
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Provide 4 examples of how you would identify an individual is entering the last days of their life, including symptoms you might expect to see.
Was there anything else, apart from the changes you observed in the individual, which helped to identify they were now dying? List who would be involved in the decision making process to decide an individual is now entering the last days of life?
1. Reduced mobility – now in bed. Less mentally alert
2. Reduced eating or drinking. Changes in breathing.
3. Unable to swallow medication
4. Sleeping more.
The dying individual, if they have mental capacity. - Next of kin eg partner, relative, close friend - Health and social care workers involved in care. eg doctor, nursing staff, social worker, specialist nurses, care home staff. - Independent Mental Capacity Advocate if there is no next of kin Learner should identify this as a multi-disciplinary team decision ie everyone should be in agreement the individual is now dying.
Learners should identify contributing factors: eg
any condition where there has been deterioration leading to the dying phase eg cancer, heart failure, motor neurone disease, dementia
increase in hospital admissions but individual continuing to deteriorate.
failing to respond to treatment -
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To aid planning, delivery and communication of care in the last days of life, appropriate documentation and systems are used. This helps to: a) Ensure the dying person’s wants, needs and wishes are known b) Aid communication between all those involved in providing care c) Meet the requirement for appropriate recording of care delivered Make a list of documentation and systems you are aware of being used in your working area - you may need to ask colleagues for advice: Also make a list of the key workers responsible for initiating the documentation and systems used in your working area?
A health or social care worker may provide the Advance Care Plan - Preferred Priorities for Care document A health care worker usually provides an Advance Decision to Refuse Treatment document. The individual must complete these documents when they have mental capacity. It may be the health or social care worker who initiates conversations about an individual completing these documents.
A doctor - Treatment Escalation Plan / Do Not Attempt Cardio Pulmonary Resuscitation.
A doctor and a trained nurse - Integrated Care Pathway for the last days of life
Health care workers usually, although in some area senior social care and senior domiciliary care workers may initiate a core information form - Electronic palliative care co ordination in some areas senior social care and senior domiciliary care workers system
Examples include; Advance Care Plan. - Preferred Priorities for Care. Advance Decision to Refuse Treatment Treatment Escalation Plan / Do Not Attempt Cardio Pulmonary Resuscitation. Integrated Care Pathway for the last days of life Electronic palliative care co ordination system
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Out of those you have listed, is there one document which incorporates all of the following: a) Ensure the dying person’s wants, needs and wishes are known b) Aid communication between all those involved in providing care c) Meets the requirement for appropriate recording of care delivered If the answer is yes, is it an integrated care pathway used specifically for care in the last days of life? An integrated care pathway:
Provides a plan of anticipated care, to be used within a given
period of time.
Provides 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.
Provides a plan of care specific to the needs and wishes of the
individual.
Provides all health and social care workers with a guide to care
and treatment required. This prevents inequality in care.
Aids communication between health and social care workers
providing care to an individual
Incorporates 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.
An example of an integrated care pathway used in the last few days of life is the Liverpool Care Pathway. There are other pathways which may be known by a different name. They serve the same purpose and a different one to this example may be used.
An integrated care pathway for the last few days of life should be the answer. Examples of the integrated care pathway for the last days of life will vary depending on the area in which the learner works. An example is the Liverpool Care Pathway.
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Look at an integrated care plan used in the last days of life in your working area. If there is not one available go to the following link to access the Liverpool Care Pathway: http://www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/liverpool-care-pathway/updatedlcppdfs/LCP_V12_Core_Documentation_FINAL_%28Example%29.pdf
There are some other important documents which have to be considered in the initial assessment stage. It should always be clarified with the individual where possible, or their next of kin, if any prior records of wishes have been made. These documents may include:
Advance Care Plan (ACP) Where possible, individuals who have prior knowledge that they may die in the near future should be given the opportunity to record their wants, needs and wishes. This is called an Advance Care Plan. It is sometimes called a ‘preferred priorities for care document’. It is not legally binding and the individual may change their mind about what is recorded in it.
The Advance Care Planning support sheet 3 available on the link below demonstrates at what point an Advance Care Plan should be discussed
http://www.endoflifecare.nhs.uk/assets/downloads/supportsheet3_1.pdf
The ‘Planning for your future care. Advance Care Planning’ document provides guidance on what information individuals may wish to have recorded. You may view a copy on the following link: http://www.devon.gov.uk/d_0903_004_139223_v4_-_a4_low_res2.pdf
Now list 5 things which an individual may record in an Advance Care Plan. Advance Decision to Refuse Treatment (ADRT) An individual may choose to make explicit instructions on care they DO NOT wish to receive in the future if they become unable to speak for themselves. They may make these wishes known in advance, provided they have full mental capacity at that time. These decisions may be recorded as an ADRT. This document is legally binding and healthcare workers must respect the decisions. e.g. an individual has stated they do not wish to have an artificial feeding tube inserted should they be unable to swallow when their condition deteriorates. Individuals may change their minds about decisions, as long as they have full mental capacity. Adults have to be over 18 years of age to make an ADRT.
You will need to access a copy of an Advance Care Plan to check learners answers as there are a number of things which may be recorded. Examples include:
- Where they would like to be cared for. - Wish to be kept pain free with use of appropriate medication - Faith, cultural, spiritual wishes. - After death wishes/ funeral plans
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Click on the following links to help you to develop an understanding of an ADRT. “Advance decision to refuse treatment” A guide. N.H.S. https://docs.google.com/viewer?a=v&q=cache:K6q9kreMmD0J:www.adrt.nhs.uk/pdf/ADRT_a_guide_May_2009.pdf+&hl=en&gl=uk& “ Legal and ethical issues” available on the website: Dying Matters http://dyingmatters.org/page/legal-and-ethical-issues Do not attempt cardio-pulmonary resuscitation (DNACPR) Cardio-pulmonary resuscitation is a treatment to be commenced if the heart stops beating. Unless specific, signed instructions have been documented by a doctor, then an individual has to have cardio-pulmonary resuscitation attempted. When an individual is recognised as being in the dying phase then a decision will be made to allow a dignified death and resuscitation will not be attempted. In this case, it is important that a DNACPR document has been signed by a doctor and communicated to the multidisciplinary team. The DNACPR must be located with the individual, in the place where they are cared for. If paramedics are called out in an emergency they must see signed documented evidence that an individual is not for resuscitation. The individual, where possible, or relatives, if the individual lacks mental capacity, should be involved in the decision-making process with members of the multi-disciplinary team. However, the most senior medical professional can make a decision that a treatment is ‘futile’ - serves no benefit or purpose to the dying individual (General Medical Guidance 2010). The patient information leaflet ‘Decisions about cardiopulmonary resuscitation’ patient leaflet. St Nicholas Hospice provides guidance on DNACPR. Ask your tutor to access this leaflet for you. Organ Donation: Some individuals choose to donate organs or tissue, when they die. An example of an organ is a kidney. An example of tissue is the cornea (part of the eye). Organ donation registration forms must always be signed by the individual. When an individual is dying, and has not been maintained on a life support machine, there are limitations on what may be donated. If an individual dies at home then donation of the cornea is possible. Some individuals choose to donate their body or other organs to medical science. This may be emotionally difficult for relatives as there is no immediate funeral held when a body is donated to medical science. The following resources will help develop your understanding of organ / tissue donation:
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Organ donation: What can be donated? http://www.nhs.uk/Conditions/Organ-donation/Pages/Definition.aspx Cornea donation http://www.nerc.co.uk/helping_us_cornea_donation.htm Look at the video clip: Jill and Phil say: Do not resuscitate http://www.nhslocal.nhs.uk/story/features/jill-and-phil-brooks-explain-why-they-have-prepared-do-not-resucitate-document How has Jill been able to make her wishes known? Which of the documents you have learnt about are in place for Jill? To allow an individual to have a dignified death and to not have cardio-pulmonary resuscitation attempted: What must be in place? Who must sign the document to ensure it is valid? Where is the document held?
Verbally by discussing with: her husband, sons, hospital staff, a family liaison officer when at home, her own doctor. By putting appropriate documentation in place, the following will know: hospital staff, paramedics, a doctor at the GP surgery if her own doctor is not available.
Advance Decision to Refuse Treatment (ADRT) Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR) Both of these had to be signed by her own doctor at the GP surgery. The documents remain with Jill wherever she is cared for.
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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You should now have a good understanding of identifying when an individual is in the last few days of life, the documentation, systems involved and to be taken by the multidisciplinary team. 1. Explain the difference between an Advance Care Plan and an integrated care pathway: 2. When may an individual make an Advance Decision to Refuse Treatment?
1. An Advance Care Plan is made in advance of an individual entering the last days of life. The individual may have their own needs, wants and wishes documented. If they do not have mental capacity to make their own choices then the person who has lasting power of attorney for health decisions may be asked on their behalf. An integrated care plan eg the Liverpool Care Pathway is put in place when an individual is identified as being in the last days of life. It allows the needs, wants and wishes of the individual to be recorded during the initial assessment and allows implementation of an appropriate care plan for the individual.
The Advance Care Plan will be used to assist in identifying what the individuals needs, wants and wishes are now they are in the last days of life.
2. An individual may make an Advance Decision to Refuse Treatment at any time provided they have mental capacity to do so. It is usually made when an individual is diagnosed with a life threatening condition, from which they will deteriorate in the future. It provides specific details of treatment to be refused. eg - antibiotics if they develop an infection - admission to hospital - being placed on an artificial breathing machine -having an artificial feeding tube inserted.
- A valid Do Not Attempt Cardio Pulmonary Resuscitation document – It must be signed by a doctor.(registered medical practitioner) - The document is held where the individual is cared for.
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Reflect on an Advance Care Plan you have seen in place for an individual who has died:
What was included from the Advance Care Plan in the care of the individual during the last days of their life?
Was there anything from the Advance Care Plan which could not be put in place / achieved?
Why may this have been the case?
Why is it important to include and follow the wishes recorded by the individual in their Advance Care Plan?
This may take place as a discussion with the learner. Answers will be subjective but examples may be: - The wish to remain at home was not achieved because the relatives could not cope. - The preferred place of care could not be achieved eg wished to be in a hospice but no beds were available - Faith requests could not be met as no faith leader was available at night.
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Provide an anonymised example of an integrated care pathway for an individual and describe your involvement e.g.
Providing information during initial assessment
Recording of care you have delivered
Identifying changing needs
Care after death
The role of the multi-disciplinary team: From this learning activity you are developing knowledge about the necessity to communicate with others, including the multi-disciplinary team, to assist with planning and implementation of care. You will need to demonstrate competence in working in partnership with others to support the individual’s well-being during the last days of life to meet learning outcome 3.2. Working in partnership is necessary throughout care of the dying individual including after death.
You will need to have an integrated care pathway document to refer to as there are several examples learners may provide. Examples of initial assessment may include:
- Treatments, or care to be stopped, continued or commenced.
- Do Not Attempt Cardio Pulmonary Resuscitation document in place
- Faith, cultural, spiritual wishes. - Next of kin contact details
Examples of ongoing care may include:
- Assessment and treatment of pain. - Assessment and treatment of agitation - Delivering personal care - Delivering oral care - Re-positioning - Psychological needs - Care of relatives/close friends present
Examples of care after death section:
- Date and time of death - Who was present when individual died. - Name of healthcare worker verifying death - Name of funeral director
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You may also wish to complete any of the following e-ELCA modules (see information at start of unit handbook) to support evidence of your learning. Remember, once you have completed e- ELCA modules, print off your certificate and place in your portfolio. www.e-lfh.org.uk/projects/e-elca/index.html e-ELCA Course 1_008 ADRT – principles e-ELCA Course 1_009 ADRT – in practice e-ELCA Course 1_004 Benefits and risks of ACP e-ELCA Course 2_027 Recognise the dying phase e-ELCA Course 4_035 Assessment of dying phase and after death (This e-learning module also relates to learning activity 5)
Resources to support your learning Advance Care Planning: A guide for health and social care staff. National End of Life Care Programme http://www.endoflifecare.nhs.uk/assets/downloads/pubs_Advance_Care_Planning_guide.pdf Advance Care Planning.-How does it work in practice? Rich, A and Abel, J. Scottish Journal of Healthcare Chaplaincy Vol.12. No. 2. 2009 http://www.sach.org.uk/journal/1202p47_rich_abel.pdf:no.
What members of the multi-disciplinary team are you already aware of? Ask your tutor for the work sheet ‘The multi disciplinary team who participates in care of the dying individual in the last days of life?’ Use the work sheet to record those you are aware of and provide a brief description of their role. Are they available at any time of the day or night? How do you communicate with them? When completing the work sheet remember that support of the dying individual includes care after death. You may use the work sheet to support evidence of learning for your case study in learning activity 7. Add to the list as you learn about others in further learning activities.
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The LCP for the dying patient: A guide to implementation. (2007) End of Life Care, Vol 1:No.1 http://endoflifecare.co.uk/journal/0101_lcp.pdf
Liverpool Care Pathway for the Dying Patient (LCP) ‐ FAQ
http://www.liv.ac.uk/media/livacuk/mcpcil/documents/LCP,FAQ,August,2012.pdf The following resources will also support learning for other learning activities in this unit: End of Life: The facts. A booklet for people in the final stages of their life and their carers. http://www.mariecurie.org.uk/Documents/PATIENTS-CARERS-FAMILIES/End-of-life/end-of-life-the-facts.pdf End of life care in extra housing. Learning resource pack for housing, care and support staff. (National End of Life Care Programme, 2012) http://www.endoflifecare.nhs.uk/search-resources/resources-search/publications/imported-publications/end-of-life-care-learning-resource-pack.aspx
Completed Activity Now learners have completed this activity we recommend they go back to their 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 they have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.
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Activity 2:
Web resources The Dying Processes. Support sheet 8 .National End of Life Care Programme. http://www.endoflifecare.nhs.uk/search-resources/resources-search/publications/imported-publications/the-dying-process.aspx Coping with dying. Understanding the changes which occur before death. http://www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/liverpool-care-pathway/pdfs/Coping_with_Dying_Leaflet_-_April_2010.pdf To download an example of an integrated care pathway for the last days of life document The Liverpool Care Pathway: http://www.liv.ac.uk/media/livacuk/mcpcil/migrated-files/liverpool-care-pathway/updatedlcppdfs/LCP_V12_Core_Documentation_FINAL_%28Example%29.pdf Advance Decision to Refuse Treatment. A guide. N.H.S. https://docs.google.com/viewer?a=v&q=cache:K6q9kreMmD0J:www.adrt.nhs.uk/pdf/ADRT_a_guide_May_2009.pdf+&hl=en&gl=uk& “ Legal and ethical issues” available on the website: Dying Matters http://dyingmatters.org/page/legal-and-ethical-issues
DNACPR decisions: who decides and how? National End of Life Care Programme.
http://www.endoflifecare.nhs.uk/search-resources/dnacpr-web-resource.aspx “Decisions about cardiopulmonary resuscitation” patient leaflet. St. Nicholas Hospice http://www.stnicholashospice.org.uk/Resources/StNicholas2012/Clinical/Decisions%20About%20CPR%20NEW%20July%202011.pdf Organ donation: What can be donated? http://www.nhs.uk/Conditions/Organ-donation/Pages/Definition.aspx Cornea donation http://www.nerc.co.uk/helping_us_cornea_donation.htm
Jill and Phil say: Do not resuscitate: Video clip
http://www.nhslocal.nhs.uk/story/features/jill-and-phil-brooks-explain-why-they-have-prepared-do-not-resucitate-document
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Activity Sheets Individual learning activities in work book
PowerPoints/ Lesson Plans Slide 6, 7, 8, 9 – Power point: Supporting individuals during the last days of life.
E- learning Resources e-ELCA Course 1_008 ADRT -principles e-ELCA Course 1_009 ADRT – in practice e-ELCA Course 1_004 Benefits and risks of ACP e- ELCA Course 2_027 Recognise the dying phase e-ELCA Course 4_035 Assessment of dying phase and after death (This e-learning module also relates to learning activity 5)
Further Reading Advance Care Planning - How does it work in practice?. Rich, A and Abel, J. Scottish Journal of Healthcare Chaplaincy Vol.12. No. 2. 2009 Full article may be accessed from this link: http://www.sach.org.uk/journal/1202p47_rich_abel.pdf
Advance Care Planning: A guide for health and social care staff. National end of Life Care Programme
http://www.endoflifecare.nhs.uk/assets/downloads/pubs_Advance_Care_Planning_guide.pdf
End of Life: The facts. A booklet for people in the final stages of their life and their carers.
http://www.mariecurie.org.uk/Documents/PATIENTS-CARERS-FAMILIES/End-of-life/end-of-life-the-facts.pdf
Euthanasia and assisted suicide http://www.nhs.uk/conditions/Euthanasiaandassistedsuicide/Pages/Introduction.aspx
Liverpool Care Pathway for the Dying Patient (LCP) ‐ FAQ
http://www.liv.ac.uk/media/livacuk/mcpcil/documents/LCP,FAQ,August,2012.pdf
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Activity 3: Maintaining comfort and dignity ___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 5). Those highlighted green are the ones learners will cover when they have successfully completed it.
1.1 1.2
2.1 2.2 2.3 2.4 2.5
3.1 3.2 3.3 3.4
4.1 4.2 4.3
5.1 5.2 5.3 5.4 5.5
6.1 6.2
Assessment Method: Research Assessment Type: Knowledge and competence
Tutor/Assessor Guidance: This learning activity looks at how comfort and dignity is maintained in the last few days of life. Learners will gain an understanding of what supports and hinders an individual’s comfort and dignity and learn how they may contribute to care within the boundaries of their role. Knowledge will be gained in the management of some common symptoms which may occur in the last days.
Activity 3: Maintaining comfort and dignity
About 2 hours
As an individual enters the last days of life, it is essential an assessment is carried out. This enables relevant care and treatment to be implemented which assists with maintaining comfort and dignity. As you have already learnt in learning activity 2, an integrated care pathway may be used. The initial assessment of the integrated care plan used in the last days of life (eg the Liverpool Care Pathway) ensures a ‘holistic assessment’ is carried out. This guides health and social care workers on what needs to be put in place.
Holistic means ‘whole’. Therefore the physical, psychological, social, faith, culture and spiritual
needs of the dying individual are assessed.
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During this assessment, needs and wishes may necessitate stopping, continuing or commencing treatment and care. The ultimate goal of all treatment and care is to maintain comfort and dignity. The following are examples of what may be stopped, continued or commenced.
Medication: Many patients, when dying, have difficulty swallowing and therefore medication given by mouth may be stopped. If tablets cannot be swallowed, medication in liquid form may be acceptable. Certain medications may be stopped as they are no longer of benefit to the individual in the last days of life.
When dying, it is sometimes necessary that individuals continue to receive medication to control symptoms for other conditions they may have. An example is Parkinson’s disease where medication helps control their tremors and rigidity (stiffness) of limbs. If the individual can no longer swallow oral medication then an injection at regular intervals may be necessary. There are different specialist nurses for specific conditions. They may be involved in the discussions of appropriate medication in the last days of life. Sometimes an individual may already be receiving pain relief medication delivered via the transdermal route (absorbed through the skin) prior to the dying phase. Medication delivered via this route may continue.
Personal care: It is essential that all personal care needs are continued to maintain comfort and dignity. This includes washing, mouth care, care of hair and changing of clothing. Men should continue to be shaved regularly if this is what they have always maintained themselves. There may be urinary and faecal incontinence necessitating use of continence pads which should be checked regularly and changed when soiled.
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Providing fluids and nutrition: In the last few days of life only minimal amounts of food and fluids may be tolerated. This is because the body ‘shuts down’ in the dying phase and there is a reduced need to eat and drink. This sometimes requires careful explanation to relatives. The individual is NEVER refused fluids to drink unless they either have difficulty swallowing or are unconscious. ‘Drips’ – the giving of fluid via a needle into the arm, may or may not be used depending on if it is deemed appropriate for the dying individual. Sometimes a drip may cause distress as the body cannot always cope with receiving large amounts of fluid in the last few days.
Re-positioning: The frequency of re-positioning an individual when dying should be as appropriate to maintain comfort. If individuals are re-positioned too frequently they may become distressed and comfort may not be achieved. Relevant pressure relieving equipment and moving and handling equipment should be in place. If the individual is in pain or becomes distressed during re-positioning, a healthcare worker should be notified as re-assessment will be necessary.
Respecting faith and cultural beliefs: This may include ensuring certain jewellery or clothing is not removed. Faith leaders may visit or remain in attendance with other members of the faith. Certain rituals or ceremonies may be performed. Meeting spiritual needs: Some individuals have no faith beliefs but may wish to have things in place which bring them spiritual comfort. Examples include favourite music being played or a family photo in close view.
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Mouth care: Mouth care is essential to keep it clean, moist and free from ‘bad breath’ as there will be reduced oral fluid intake. There are also many drugs, including those used in end of life care, which may cause a dry mouth. It is important the mouth is regularly cleaned to remove bacteria and keep it moist to maintain comfort. If relatives see their loved one with a dry, dirty mouth they may feel there is neglect of care. The lasting memory for relatives in giving the final kiss should be a good memory. Equipment for mouth care:
Soft bristled tooth brush. This may be a baby tooth brush or
a tooth brush specifically for end of life care.
Non- foaming toothpaste (a small pea sized amount should
be used).
If possible, all surfaces of the teeth, the gums, the top of the
tongue and inner cheek surfaces should be gently brushed.
The inside of the mouth may be kept moist by frequently
applying water and applying a moistening gel prescribed by
a healthcare worker. e.g oral balance gel. Pineapple juice
or crushed pieces of ice cubes may be preferred by the
dying individual when conscious.
Lip care should be provided to prevent drying and cracking.
The following may be used: Lip balm, KY jelly or the same
gel which is used to moisten the inside of the mouth. Some
lip sticks, if already used by the individual, may be
appropriate as they usually contain a moisturiser.
N.B. Vaseline (Petroleum jelly) should not be used,
particularly if oxygen therapy is in use, as it is flammable.
Dentures should be removed and cleaned at least daily.
- the gums, inside of cheeks and tongue should be gently
brushed to remove bacteria and freshen the mouth.
Pink foam swabs are not appropriate for cleaning the
mouth. The foam is rough and may cause tears to the
inside mouth surfaces. There is also a risk of the swab
coming apart from the stick and causing choking (Medical
Device Alert, 2012). They should therefore be used with
caution.
Lemon glycerine swabs. The glycerine content has a
dehydrating effect and may contribute to causing a dry
mouth. The lemon taste may be too strong and is not
always tolerated.
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Management of symptoms: There are 5 main symptoms which may present in the last days of life:
Pain
Restlessness & agitation
Breathlessness
Nausea & vomiting
Build up of secretions in the back of the throat. (This is sometimes called the ‘death rattle’ by relatives.)
(Ellershaw and Wilkinson, 2011)
Medication will be made available for these symptoms in case they are needed. This is called anticipatory medication. If the individual can still swallow then medication to control pain may continue to be given by this route. A number of other routes may also be used. Your tutor will provide you with a work sheet ‘What routes are used to administer medication in the last days of life?’’ to assist with your learning of identifying the different routes. The following resource will also assist your learning: Medication routes and delivery systems. Partners against pain.com http://www.partnersagainstpain.com/printouts/medication_routes_and_delivery_systems.pdf Ask your tutor to provide this leaflet if you are unable to access it. List the routes on the work sheet which you have seen in use.
Learners should list any of the following which are provided on the work sheet: 1. Oral 2. Trans dermal 3. Buccal 4. Injection 5 Sub lingual 6. Syringe driver
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Which of these routes are you authorised to use when administering medication? Pain: Remember - pain is what the individual says it is! However some individuals are unable to verbally communicate or understand when asked “Are you in pain?” especially in the last days of life. How would you identify a dying individual is in pain?
Learners should demonstrate an understanding of the limitations of their role when administering medication. Depending on the role of the learner they may be authorised to administer medication via the following routes: Oral, buccal, sublingual. Some learners MAY be authorised to carry out routine changes of transdermal patches. Learners should be able to explain the procedure for administering medication. - All medication needs to be prescribed by a doctor to permit administration. - Knowledge of correct storage, including controlled drugs. - Knowledge of record keeping - Identification of individual prior to administration. Learners may provide evidence of competency in administering medication. Learners in social care who administer medication should be aware of the following document: The Handling of Medicines in Social Care http://www.rpharms.com/social-care-settings-pdfs/the-handling-of-medicines-in-social-care.pdf
By verbal questioning - if individual is still able to communicate and understand you. They may have communication difficulties eg lack mental capacity or English may not be their first language. By looking at an individual - Observing facial expression and body language. eg frowning, clenched teeth, eyes tightly shut; clutching area where pain is, knees drawn up to chest, restless and agitated.
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How can we measure how much pain an individual has? Pain assessment tools may be used to help identify if an individual is in pain and how much pain may be present. Is a pain assessment tool used in your working area? If so, which ones are used? Look at the following links to learn about some different types of pain assessment tools: General Palliative Care Guidelines for the Management of Pain at the End of Life in Adult Patients. Pages 9-12, 59 and 61: http://www.gain-ni.org/images/Uploads/Guidelines/Gain%20pain%20final.pdf FLACC pain assessment tool: http://pain.about.com/od/testingdiagnosis/ig/pain-scales/Flacc-Scale.htm Abbey pain scale: http://www.gloucestershire.gov.uk/extra/CHttpHandler.ashx?id=45207&p=0 Dementia gateway: End of life care. Pain in advanced dementia: http://www.scie.org.uk/publications/dementia/endoflife/pain.asp DisDat tool: http://www.disdat.co.uk Translations of Wong Bakes FACES® Pain Rating Scale: http://www.wongbakerfaces.org/public_html/wp-content/uploads/2013/03/Faces_Translation_R.pdf Now provide an example of an appropriate assessment tool for the following individuals who are in their last days of life:
Stella has full mental capacity and is hearing impaired. Although conscious she is unable to verbally communicate: - FACES pain rating scale - FLACC tool
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Ahmed has full mental capacity, is visually impaired and still conscious: - Verbal score 0 -10
Valentino is unable to understand English and is now semi- conscious: - FLACC tool
Georgio has advanced dementia: - ABBEY pain scale
John has learning disabilities and is unable to verbally communicate: - DisDat tool
Ling is Chinese and unable to speak English. He is conscious and has full mental capacity: - FACES pain rating scale
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‘Total pain’ is a term sometimes used to describe pain which although physical, may feel worse to the individual. This is because emotional factors such as fear or worry may be contributing factors. Faith, culture and spirituality may also influence an individual's tolerance to pain. The following questions should be considered:
Does the individual freely say if they have pain or other symptoms or will they only say in response to being asked?
Does the individual believe pain must be tolerated to ensure passing on to the spiritual place after death.
Is pharmacological management permitted or is there preference to traditional medicine?
‘Non-pharmacological management’ is a term used when attempts are made to control symptoms without medication. This may be due to medication being refused for faith/ cultural reasons or a delay in medication being made available. Some examples of non-pharmacological management are:
Hand massage therapy
Aromatherapy
Music being played
Meditation What is your role in the management of pain for an individual in the last days of life?
- Learners should clearly identify the limitations of their role. They may not be authorised to administer medication. However, some may be authorised to administer oral medication. - Learners should recognise when to communicate with healthcare workers. eg request doctor attends to prescribe medication or review as medication not effective. - There should be knowledge of non pharmacological management eg what may the learner do whilst awaiting arrival of worker authorised to administer medication - Providing reassurance by talking to individual in calm manner. - Providing hand massage therapy if learner has received appropriate training - Playing soothing / favourite music of individual.
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You may wish to have a professional discussion with your tutor to explain how you have identified an individual as being in pain and the action you took. Provide an example of a pain assessment tool you have used if possible. Otherwise find an example of a pain assessment tool which is appropriate for the individuals you care for. Restlessness & agitation: This may occur for a number of reasons and may include:
Retention of urine. This is a medical term used when an individual has a full bladder but cannot pass urine. Some medications may cause this. If you know the individual has not passed urine for a while and you see them looking agitated or restless, inform a healthcare worker.
Constipation. Even when in the last days of life an individual may experience discomfort because of constipation. A healthcare worker will need to examine the individual if this is suspected.
The life styles of individuals may contribute to agitation and restlessness when dying. e.g. withdrawal effects -nicotine, alcohol, substance misuse.
The build up of secretions at the back of the throat- sometimes called the ‘death rattle’ by relatives. This may be present in the final hours of life and is caused by the individual being unable to swallow. Whilst the noise may be distressing to people around, it does not usually cause the individual distress. Re-positioning may help. Sometimes an injection is required which can also cause a very dry mouth and sometimes retention of urine.
Look at the scenario below: You are providing care for George, an 82 year old service user who is in the last few days of life. He is semi-conscious and unable to verbally communicate with you. Relatives, who are sat by George’s bedside, are concerned as George has become very restless.
What are the possible reasons for the restlessness? State what actions you could take and explain the reasons why? Refer to answer sheet in Tutor / Assessor resources L.A. 3
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Breathlessness: Possible causes.
Fear and anxiety.
Over exertion e.g. excessive talking
Conditions eg Chronic obstructive airways disease, lung cancer, heart failure.
Some possible actions:
Provide reassurance
Try to ensure a calm environment
Use of oxygen therapy if available
Use of an electric fan to assist with airflow in room
Window slightly open to assist with airflow in room
Appropriate positioning with use of pillows to support
Keep face cool
Regular mouth care as breathlessness will cause a dry mouth.
Request a healthcare worker attends to assess as medication may be need to be administered.
Nausea and Vomiting: Possible causes.
Side effect of medication eg morphine
Conditions e.g. cancer of bowel causing obstruction
Severe pain
Excessive coughing
Constipation
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Some possible actions:
Provide reassurance
Place individual in appropriate position. eg on side if unable to sit up.
Provide a bowl and towel to protect clothing in case of vomiting.
Provide mouth care after episode of vomiting.
Contact health care worker to request assessment for administration of anti sickness medication
Support of relatives / close friends: It is important to ensure communication is maintained with the relatives/ close friends and clear explanations of care should be given. Some relatives/ close friends may be glad to have the involvement of health and social care workers as they may be exhausted both physically and emotionally. However, sometimes they may feel left out and no longer needed when increased numbers of health and social care workers become involved. Relatives / close friends should always be asked if they would like to participate in care. This may help them psychologically, including in their bereavement process, knowing they were able to contribute to care. In 2005 the Carers (Equal Opportunities) Act, came into effect. This entitles relatives/ close friends who are carers to be assessed for their own needs. The following resource will also support your learning. Supporting carers. An action guide for general practitioners and their teams. (2012) http://www.endoflifecare.nhs.uk/assets/downloads/Carers_Action_Guide.pdf End of life issues - Carers and end of life care. http://www.nhs.uk/CarersDirect/guide/bereavement/Pages/Overview.aspx Carers’ needs: SCIE Dementia Gateway: End of Life Care. http://www.scie.org.uk/publications/dementia/endoflife/needs.asp
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The following resource will also assist with your learning about ICDs at the end of life: Implantable cardioverter defibrillators in patients who are nearing the end of their life: http://heartrhythmuk.org.uk/files/file/Docs/Guidelines/BHF%20ICDs%20endoflife_booklet%5B1%5D.pdf Following death it is important you inform healthcare workers who verify the death and funeral directors who collect the deceased, about ICDs. An ICD is battery operated. If the deceased is to be cremated the ICD must be removed prior to cremation otherwise it will explode during the cremation process.
Care of the dying individual who has an ‘Implanted Cardiac Defibrillator’ device (ICD): What is an ICD and why is it important to inform a healthcare worker if you are aware of a dying individual having an ICD? Some individuals may have had a surgical operation in the past to insert an ICD which is a battery operated medical device inserted into the chest. An ICD helps individuals with specific heart conditions when on occasions they experience rapid heart rhythms which may be life-threatening. The ICD device works by delivering mini electric shocks to the heart to get it back into a stable rhythm. This allows individuals to live a more normal lifestyle and prevents frequent hospital admissions and reduces the risk of premature death. In the dying phase it is not unusual for the heart rhythm of most individuals to be irregular and on occasions rapid. For those individuals who have ICDs this means frequent shocks could be delivered as the device does not recognise the individual is now dying. To ensure the dying individual does not experience unnecessary discomfort the ICD should be de-activated. This will necessitate input by healthcare workers (it does not require a surgical operation).
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Other battery operated devices which have to be removed include:
Pacemakers (another device used for certain heart conditions)
Vagus nerve stimulators (a device used for individuals who have epilepsy- it is usually located in the chest area)
Intrathecal pumps (a device which pumps medication into the spine- The pump is usually located in the abdominal area)
Provide two pictorial examples of battery operated surgically implanted. devices including where they are located. These should be applicable to the individuals you care for: If you have difficulty accessing examples discuss with your tutor. Stop, start, continue: Make a list of treatments, medications and care you have seen stopped, continued or commenced when individuals are identified as in the last days of life.
Two examples of each of the four devices are available in Tutor / Assessor resources L.A. 3 You may need to provide an example for learners if they have difficulty accessing the internet.
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Think about those that you have listed. Look at 2 of each and write what the consequences could be if they were not stopped, continued or commenced.
Look at each of the following scenarios which illustrate how the needs of dying individuals may change quite rapidly.
Stopped 1: Possible answers may be found with the case study answers – LA7 Stopped 2: Continued 1: Continued 2: Started 1: Started 2:
SCENARIO 1: Gillian, aged 53, is being cared for in hospital and has just been identified as being in the last days of life. She is being discharged home later today as that is her preferred place of care but is not yet on an integrated care pathway. Gillian is prescribed regular oral medication, in liquid form, for pain relief. When offering Gillian a drink you identify she is now having difficulty swallowing. What are the changing needs of Gillian and what action should you take?
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SCENARIO 2: Aisha, aged 42, is being cared for at home. She is in the last few days of life having been diagnosed with cancer only six months before. Aisha’s Advance Care Plan and integrated care plan state her preferred place of care is at home. You are providing personal care for Aisha when she suddenly starts crying. Aisha tells you she is such a burden to her husband who she can see is exhausted with caring for her. Aisha tells you she wants to be admitted to a hospice. What are Aisha’s changing needs and what action could you take?
SCENARIO 3: You are on night duty in a hospice and check on Jim, aged 80 years. Jim is in his last few days of life but can still verbally communicate. He is married to Jean who went home after visiting a couple of hours ago. You are aware that an integrated care pathway is in place. It states Jim has said he has no religious beliefs or needs. Jim tells you that he has been awake doing a lot of thinking. He is worried that although he has always said he is an atheist maybe there is a God and heaven. As his wife has been baptised and he has not, Jim is worried he may ‘go to a different place’ to his wife when she dies. Jim says ‘I know it’s too late to do anything about it now’. What are Jim's changing needs and what action should you take?
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Watch the video clip: Dying at home (10 minutes approx.) Access the video by following the link below: http://www.scie.org.uk/socialcaretv/video-player.asp?v=dyingathome As you watch, make notes on 1. How comfort and dignity is being maintained for the individuals who were cared for at home. Use the following headings when making notes:
Physical needs
Psychological needs (emotions and feelings)
Faith, cultural and spiritual needs
Social needs 2. Who was involved? 3. List other methods of enhancing comfort and wellbeing that you have carried out in your role with people in the last days of their life.
Notes:
Refer to tutors notes for possible learner’s responses. These will be located with the resources for this learning activity This may be used as a lesson activity
The following e-ELCA learning modules may be completed to support evidence your learning. 04 04 Individual preferences and cultural influences on symptom
management 04 25 Managing agitation and restlessness in the dying phase 04 06 Recognising your own limitations in symptom management 04 23 Recognising the dying phase, Last few days of life and verifying
death
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Additional resources to support your learning End of life care. Managing pain and other symptoms. NHS choices http://www.nhs.uk/Planners/end-of-life-care/Pages/controlling-pain-and-other-symptoms.aspx
A guide to carers' rights. NHS Choices
http://www.nhs.uk/CarersDirect/guide/rights/Pages/carers-rights.aspx Ellershaw, J & Wilkinson, S (Eds) (2011) Care of the Dying: a pathway to excellence, 2nd. Edition, OUP: London
Medical Device Alert: Oral swabs with a foam head, all manufacturers (MDA/2012/020) (2012)
http://www.mhra.gov.uk/Publications/Safetywarnings/MedicalDeviceAlerts/CON149697
Syringe drivers for giving pain control
http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Pain/Syringedrivers.aspx Pain overview. Pain decision aid. National Prescribing Centre http://www.npc.nhs.uk/therapeutics/pain/overview/pda.php General Palliative care Guidelines for the Management of Pain at the End of Life in Adult Patients. (2011) http://www.gain-ni.org/images/Uploads/Guidelines/Gain%20pain%20final.pdf The assessment of pain in older people. No. 8. National guidelines. (2007) http://britishpainsociety.org/book_pain_older_people.pdf Palliative Care Guidelines: Nausea / Vomiting | Version 2 NHS Lothian http://www.palliativecareguidelines.scot.nhs.uk/documents/NauseaVomiting.pdf Palliative Care Guidelines: Breathlessness | Version 2 NHS Lothian http://gp-palliativecare.co.uk/files/lothia_guideline_breathlessness.pdf Patients dying in hospital in pain and lacking dignity: survey. Daily Telegraph (2012) http://www.telegraph.co.uk/health/healthnews/9372138/Patients-dying-in-hospital-in-pain-and-lacking-dignity-survey.html
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Completed Activity Now learners have completed this activity we recommend they go back to their 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 they have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.
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Activity 3:
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Web resources Dying at home. Video clip (10 minutes approx.) Access the video by following the link below: http://www.scie.org.uk/socialcaretv/video-player.asp?v=dyingathome Dementia and end of life care. The story of Mairead Smart http://www.scie.org.uk/socialcaretv/video-player.asp?guid=6cddd9aa-041e-446e-b637-d47ab7b37643 Medical Device Alert: Oral swabs with a foam head, all manufacturers (MDA/2012/020) (2012) http://www.mhra.gov.uk/Publications/Safetywarnings/MedicalDeviceAlerts/CON149697
Syringe drivers for giving pain control
http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Pain/Syringedrivers.aspx SCIE. Dementia gateway. End of Life Care. Care in the last days and hours of life http://www.scie.org.uk/publications/dementia/endoflife/last.asp
Activity Sheets Individual learning activities in work book. May be used as group work exercise in lesson:
- What routes are used to administer medication in the last days of life?
- Reasons for restlessness and agitation – Actions to be taken.
- Stop, start, continue.
- Scenarios – Rapid changing needs
PowerPoints/ Lesson Plans Slide 10, 11, 12, 13, 14, 14, 16 – Power point: Supporting individuals during the last days of life. Lesson plan: The five common symptoms which may be present in the last days of life
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E- learning Resources e ELCA modules 04 04 Individual preferences and cultural influences on symptom management 04 25 Managing agitation and restlessness in the dying phase 04 06 Recognising your own limitations in symptom management 04 23 Recognising the dying phase, Last few days of life and verifying death Further Reading
A guide to carers' rights. NHS Choices
http://www.nhs.uk/CarersDirect/guide/rights/Pages/carers-rights.aspx Ellershaw, J & Wilkinson, S (Eds) (2011) Care of the Dying: a pathway to excellence, 2nd. Edition, OUP: London Exploring spiritual needs. SCIE Place “ scie spirituality” in google search engine. This will take you to - Dementia gateway. Getting to know the person with dementia. Intrathecal drug delivery systems for treating pain and spacicity. Information for patients. http://www.britishpainsociety.org/book_ittd_patients.pdf
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Activity 4 – The final hours and care after death
___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 5). Those highlighted green are the ones learners will cover when they have successfully completed it.
1.1 1.2
2.1 2.2 2.3 2.4 2.5
3.1 3.2 3.3 3.4
4.1 4.2 4.3
5.1 5.2 5.3 5.4 5.5
6.1 6.2
Assessment Method: Written tasks Assessment Type: Knowledge
Tutor/Assessor Guidance:
This learning activity provides the opportunity to develop learners’ knowledge and understanding of identifying changes in the dying individual during the final hours, and at point of death. The relevance of identifying death and carrying out procedures in line with policies and protocols are explored as well as support of relatives. This learning activity will require learners to be familiar with national guidelines as well as policies in their working area which are applicable to care after death procedures. They may be able to draw on their experiences to answer learning activities but a selection of suggested learning resources will support learning.
Activity 4: The final hours and care after death
About 4 hours
The following resources will assist your learning for this learning activity: Guidance for staff responsible for care after death.(2011) http://www.endoflifecare.nhs.uk/assets/downloads/Care_After_Death___guidance.pdf Step 6 – Care after death. http://www.endoflifecare.nhs.uk/care-pathway/step-6-care-after-death.aspx What to do when someone dies –support sheet 9. www.endoflifecare.nhs.uk/download.ashx?mid=4765&nid=3415
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As the final hours of life approach further changes in the dying individual may be noticed. Identifying this is important as it allows any final needs, wishes and rituals to be carried out. Relatives have the opportunity to gather at the bedside and emotionally prepare for the death. It is important to clarify emergency contact details with relatives who wish to be informed so they may be contacted day or night. As the dying individual deteriorates, further changes may be seen as further ‘shutting down’ of the body takes place. This may usually be identified in a number of ways although not all may be present:
Facial appearance – becomes very pale in colour
Hands and feet go cold and white, possibly blue
Further reduced consciousness and probably unconscious
Noisy breathing ‘death rattle’ - as learnt in Learning Activity 3
The breathing pattern changes – longer pauses and bigger gaps
in between breaths. This is called Cheyne Stokes breathing.
By watching and reading the following learning resources you will gain an understanding of the changes which occur in the final hours : Illustrates possible changes to breathing: how breathing patterns change towards the end of a person’s life http://www.mariecurie.org.uk/en-gb/patients-carers/for-carers/practical-help/changes-in-breathing/ What to expect when approaching death: http://www.mariecurie.org.uk/en-gb/patients-carers/for-patients/what-to-expect/ How to recognise when an individual has died.
The individual will be very still
You will observe breathing as having stopped - you should wait and observe for a few minutes to ensure it was the final breath.
The eyes and mouth may remain open.
There may be leaking of saliva, vomit, urine or faeces as the muscles in the body relax.
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The following resource provides the opportunity for further learning. What to expect at death. http://www.mariecurie.org.uk/en-gb/patients-carers/for-carers/at-death/
Action to be taken following death:
Make a note of the time to inform the healthcare worker.
Inform relatives/close friends if present that you think the individual has died. Inform them this will need to be verified by a healthcare worker.
When you notify the health care worker of the death, you will need to inform them of:
Time you noted death
Any faith/cultural considerations
If the individual has requested to donate organs or tissue following death
Any surgically implanted devices. eg ICD, pacemaker.
Depending on your area of work there may be a delay in arrival of the healthcare professional. Reassure the relatives and keep them informed of any possible delays. Sometimes, in this situation, the wearing of gloves to touch the deceased may be acceptable. If it is acceptable, explain to relatives what you are going to do and carry out the following:
Lay the deceased individual flat, with one pillow under the head.
Gently close the eyes and jaw, if open. A rolled towel can be used to support the jaw. Stiffening of the limbs ‘rigor mortis’ does not usually take place until about two hours after death.
Infection control measures should be maintained in line with national guidelines and the policy of your working area. There is a risk of infection from:
Leaking of urine and faeces as the muscles relax
Blood, saliva and other oozing fluids.
Skin contact
Airborne, transmitted as air is released from the lungs when
Some faiths and cultures only permit their own faith
leaders or members of the same sex to touch an individual when they have died.
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moved The following resource provides national guidelines on infection control measures: Prevention and control of infection in care homes – an information resource. See page 36 – Last Offices for a resident with an infectious disease. https://www.wp.dh.gov.uk/publications/files/2013/02/Care-home-resource-18-February-2013.pdf If relatives/close friends are present then allow them time for initial grieving. Whilst it is often a relief that their loved one’s suffering has ended, the relatives will still need to grieve.
Provide support and offer a hot / cold drink.
Ask if they wish a member of staff to remain with them – there may only be one relative or friend present.
Check on relatives / friends at regular intervals.
Allow time for faith / cultural rituals following death. You may wish to complete the following e-ELCA module to support your learning: 04 23 Recognising the dying phase, Last few days of life and verifying death. How do you know when an individual is now in the final hours of life? Complete the boxes on the next page and describe how you can identify by: a) Observing b) Hearing c) Touching
Remember - It is important to refer to the individual’s advance care plan or integrated care plan to check for any
specific preference / wishes in the last few hours of life and immediately after death.
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How do you know when an individual has died? Provide examples of 3 things that happen to the individual which suggest they have now died
Observing
- The skin colour will change and become very pale – this is because the heart is becoming weaker and not pumping blood around the body so well.
- The individual may appear to be reaching out to someone
with their hands
Hearing - The breathing may become noisy due to the build up of secretions in the back of the throat.
- Prolonged breathing sounds may be heard – Cheyne Stokes breathing
Touching
- The hands, feet and face may become cold
- This is because the heart is becoming weaker and the blood is not circulating around the body adequately.
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What is the procedure to be followed when an individual is identified as being dead by a non-healthcare worker in your working area?
What support and advice would you give relatives/close friends if they were present at the time of the death?
Why is it important to maintain infection control measures when providing care for a deceased individual?
1. Breathing stops
2. The muscles all relax which may involve the mouth being open, and /or the eyelids not closing
3. The individual will be very still.
This may vary depending on the role of the learner. You may wish to see the care after death policy for the area to clarify the learners answer here. This may involve;
- Informing a senior colleague to check the individual. - Informing a healthcare worker so that verification of death
may be carried out.
The learner should show an understanding of; - being compassionate - informing that learner thinks individual has died but a
healthcare worker will need to attend to verify the death. - having contacted healthcare worker then inform those
present approximate time healthcare worker will attend. - respecting faith, cultural and spiritual needs of those
present. - allow those present to stay with deceased if they wish - provide beverages. - be available for those present to talk to if they wish.
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Are there any parts of the body that may be donated following a death at home? Name any that you are aware of:
Choose 2 faiths or cultures that differ to your own. For each, describe the specific care of the individual: a) Prior to death b) At death c) Following death
The learner should demonstrate knowledge of the infection control policy for their working area and / or national guidelines (if not working in a carers role). You will need to see the policy and national guidelines to check the answers provided. Answers should include: - body fluids including urine, faeces and stomach contents may leak following death - the deceased may have had an infectious disease - the protection of others involved in care of the deceased, need to be protected when transferring the deceased. eg porters, funeral directors
The cornea (part of the eye) – for transplant use on another individual Other body parts, including the whole body, may be donated for medical science purposes.
Faith / Culture 1: There may be a variety of answers for these three boxes. Refer to the religion / faith chart in the learning resources or other resources on faiths and cultures to check the answers of learners.
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Is the care you have identified for each achievable in your working area? Write a reflective account to demonstrate you have: Provided support to a colleague in understanding the process following death of an individual in your working area. This may be teaching a new member of staff or supporting a colleague who is caring for a deceased person for the first time. You should provide evidence, and copies of relevant national, local and organisational guidelines, policies and procedures. Remember to include infection control procedures.
Reflective Account:
Faith / Culture 2:
Faith / Culture 1: The answers will vary depending on where the learners work. e.g. some faiths / cultures necessitate a member of the faith remaining with the individual until burial; the deceased has to remain in the room in which they died for a number of days. Faith / Culture 2:
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The following may be used to support evidence of learning. “Current Learning in Palliative Care” 15 minute work sheet: The last hours and days 3: The death. This may be printed off, or used electronically from the following link: http://www.helpthehospices.org.uk/clip/lhd/lhd-3/index.htm The ‘Current Learning in Palliative Care’ work sheets may be completed on-line and printed off. After completing each action learners may click on a link which allows them to compare their thoughts with those provided. Tutors / assessors may use these links to assess learners understanding and learning. e-ELCA module: 07 – 03 Practical support after bereavement
Resources to support your learning 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
Health Protection Agency: Mortality Guidelines. Management of infection control associated with human cadavers.
http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/Mortality/Guidelines/mortMortalityGuidelines/ Care of the deceased person policy (In relation to infection prevention and control) http://www.sheffield.nhs.uk/policies/resources/careofdeceasedpolicy.pdf Death and Bereavement in Islam http://www.mcb.org.uk/downloads/Death-Bereavement.pdf The Dying Process –Support sheet http://www.endoflifecare.nhs.uk/search-resources/resources-search/publications/imported-publications/the-dying-process.aspx What needs to happen after death http://www.mariecurie.org.uk/en-gb/patients-carers/for-carers/after-death/ What to do after death in England and Wales http://www.dwp.gov.uk/docs/dwp1027.pdf Step 6 – Care after death http://www.endoflifecare.nhs.uk/care-pathway/step-6-care-after-death.aspx
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Funeral directors in your locality may provide free educational sessions on care and procedures after death, including their role. You may use this to support evidence of learning for this learning activity. You may wish to complete the Current Learning in Palliative Care 15 minute work sheet: The last hours and days 3: The death. This may be printed off or used electronically from the following link: http://www.helpthehospices.org.uk/clip/lhd/lhd-3/index.htm
Completed Activity Now learners have completed this activity we recommend they go back to their 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 they have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.
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Activity 4:
Web resources How breathing patterns change towards the end of a person’s life. Video clip http://www.mariecurie.org.uk/en-gb/patients-carers/for-carers/practical-help/changes-in-breathing/ Guidance for staff responsible for care after death.(2011) http://www.endoflifecare.nhs.uk/assets/downloads/Care_After_Death___guidance.pdf Step 6 – Care after death. What to do when someone dies –Support sheet http://www.endoflifecare.nhs.uk/care-pathway/step-6-care-after-death.aspx The Dying Process –Support sheet http://www.endoflifecare.nhs.uk/search-resources/resources-search/publications/imported-publications/the-dying-process.aspx What to expect when approaching death: http://www.mariecurie.org.uk/en-gb/patients-carers/for-patients/what-to-expect/ What to expect at death. http://www.mariecurie.org.uk/en-gb/patients-carers/for-carers/at-death/ What needs to happen after death http://www.mariecurie.org.uk/en-gb/patients-carers/for-carers/after-death/ Prevention and control of infection in care homes – an information resource. See page 36 – Last offices for a resident with an infectious disease. https://www.wp.dh.gov.uk/publications/files/2013/02/Care-home-resource-18-February-2013.pdf
Activity Sheets
PowerPoints/ Lesson Plans Slide 17, 18, 19 & 20 – Powerpoint: Supporting individuals during the last days of life
E- learning Resources “Current Learning in Palliative Care” 15 minute work sheet: The last hours and days 3: The death. This may be printed off, or used electronically from the following link: http://www.helpthehospices.org.uk/clip/lhd/lhd-3/index.htm e-ELCA module: 07 – 03 Practical support after bereavemnt
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Further Reading 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
Health Protection Agency: Mortality Guidelines. Management of infection control associated with human cadavers.
http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/Mortality/Guidelines/mortMortalityGuidelines/ Care of the deceased person policy (In relation to infection prevention and control) http://www.sheffield.nhs.uk/policies/resources/careofdeceasedpolicy.pdf Death and Bereavement in Islam http://www.mcb.org.uk/downloads/Death-Bereavement.pdf What to do after death in England and Wales. Department of works and pensions http://www.dwp.gov.uk/docs/dwp1027.pdf When someone dies. A step-by-step guide to what to do. Age UK Downloadable from following link, or paper copy may be requested from AgeUK. http://www.ageuk.org.uk/Documents/EN-GB/Information-guides/AgeUKIG03_When_someone_dies.inf.pdf?dtrk=true Funeral directors in your locality may provide free educational sessions on care, and procedures, after death, including their role. Learners may wish to use this to support evidence of learning for this learning activity.
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Activity 5 - Emotions, feelings and coping. ___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 5). Those highlighted green are the ones learners will cover when they have successfully completed it.
1.1 1.2
2.1 2.2 2.3 2.4 2.5
3.1 3.2 3.3 3.4
4.1 4.2 4.3
5.1 5.2 5.3 5.4 5.5
6.1 6.2
Assessment Method: Written tasks and research Assessment Type: Knowledge
Tutor/Assessor Guidance: During the last few days of life and after death, a range of emotions can present. The feelings of everyone, including the learners may be affected to some degree. This learning activity will provide an understanding of how emotions may be affected at various stages of the dying phase, showing how they may be identified and possible means of coping. As this learning activity looks at emotions and feelings, you may prefer to support learning in a group or as a one to one discussion. Discuss with your learner as appropriate.
Activity 5: Emotions, feelings and coping
About 4 hours
The emotions experienced when an individual is dying are unique and different for each person involved. Emotions have the ability to influence how well individuals cope during this time and each individual may experience a multitude of emotions and feelings. First we need to define what emotions and feelings are. Write a definition of each of the following:
A feeling is. This is subjective as learners will provide their own definition.
An emotion is... This is subjective as learners will provide their own definition.
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Think about the different emotions and feelings that may be present and list some below: How easy is it to tell the emotions and feelings, of an individual? How well are you able to identify the emotions of individuals by looking at them?
Try this on-line quiz Emotional Intelligence Quiz | Greater Good to see how many facial expressions you can identify correctly.
Do you think individuals of all faiths and cultures display emotions and feelings in the same way?
During the last days of life phase, apart from the dying individual, the emotions and feelings of who else may be affected? - relatives and close friends including children - those involved in caring for the individual (sometimes the health and social care workers have been caring for the individual for a long time)
Examples may include: Sad Angry Happy Tired Denial Guilt Betrayed Fear Depressed Exhausted Contented At peace
The learner should state “No” to this question. They may provide examples of different faiths and cultures eg some may cry, others may see this as a sign of weakness and not cry.
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Recognising emotions by facial expression alone does not always provide a reliable means of knowing. How many times have you seen people with a big smile but on talking to them they tell you they are very sad? Have you heard relatives say “I have to put on a brave face...can’t let Dad see I’m upset”? This would identify the relative as having emotions different to what he/she displays when with their dying father. Observation of facial expression and body language as well as talking to an individual provides a more reliable means of determining the emotional state. Clearly, emotions cannot always be identified by someone else. We are usually reliant on an individual telling us how they feel to determine their emotional state of mind. Even this is not always reliable though. Therefore it can be very difficult to appreciate the emotions that individuals experience when faced with the dying experience especially the dying individual who may no longer be able to communicate. When an individual is in the last days of life, there is time for those involved to prepare for a death. There may be a range of emotions which individuals experience in this preparation phase. These same experiences may also be experienced by those involved in care following death.
Look at the following :
How bereavement affects adults http://www.bbc.co.uk/health/emotional_health/bereavement/bereavement_effectsadults.shtml Now watch the video clip: Dick and Di planned a formal, ritual goodbye, so they would not have any last minute awkwardness with a long drawn out goodbye. This can be found on the below link and then you will need to scroll down to the above title. http://www.healthtalkonline.org/Dying_and_bereavement/Caring_for_someone_with_a_terminal_illness
Elisabeth Kübler-Ross, an expert on death and dying, described five stages of grief, which may commonly be found:
Denial - refusing to believe that the individual is going to die Negotiation - attempts to bargain by promising to do something
so they may be spared from death or bereavement Anger - they don’t deserve to die! Depression - withdrawing and trying to come to terms with what
is happening Acceptance - the inevitable is going to happen and individuals
are resigned to that fact.
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How do you think Dick and Di felt during those last days? Write your answers in the spaces provided: How may their relationship have been affected during the last few days of Di's life? What emotions do you think Dick is displaying during the video?
Sad Calm Accepting The need to agree on how they would say goodbye in a meaningful, ritual way.
Strained and difficult because they were going to be parted from each other. Not knowing how they should say goodbye to each other A realisation that they would be parted Acceptance of the situation A turmoil of mixed emotions for both Dick and Di
- Calmness when explaining how they said goodbye - Sad at times - Content that he said goodbye in the way he did - Acceptance of what happened
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Look at the following internet sites to help you answer the next question. 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 If you are unable to access a computer ask your tutor to provide the information sheets available from Child bereavement UK. How may the emotions of a child be affected when a close relative is dying? How can you support a relative or close friend during the last few days and at the time of their loved one's death?
Having looked at the above resources, learners should identify children will display different emotions depending on the age groups. - they may worry that they will also die - they may withdraw - they may accept the situation - they may be unaffected displaying none of the emotions normally seen in adults
- Keep them updated on any changes / further deterioration. - Provide them with time to talk to you eg to reminisce about the good times with their loved one. - Observe for signs of fatigue. Discuss if they would like additional support eg at night so they are able to get some sleep. - Provide refreshments if they are sat by the bedside - Offer to sit with their loved one whilst they take a break or have a rest. - Allow them to have time alone with their loved one, both in the last days and following death. - Provide opportunity to participate in care if they wish
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Now watch this video clip which looks at the continued effect of bereavement on care home staff: http://www.nhslocal.nhs.uk/story/features/end-life-care-home-impact-staff
How have / could your feelings be affected by the death of a service user? Answers will be subjective.
How have you supported a colleague when they have been affected by death of an individual? Answers will be subjective. - should demonstrate compassionate and supportive approach
What support systems are available to you in your working area? Learner answers for this will vary depending on their working area. Examples may include: 1 to 1 sessions with peer, group support, supervision, in-house memorial services, opportunity to attend funeral.
Where would you access support outside of your working area? - support of relatives and close friends - Voluntary bereavement agencies, eg CRUSE - Counselling services - GP Practice
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The following resources may be completed to support evidence of your learning Complete the 15 minute on-line tutorial: Bereavement: 1: “The loss begins….:” Help the Hospice Current Learning in Palliative Care on-line tutorial http://www.helpthehospices.org.uk/clip/b/b-1/index.htm Complete the 15 minute on-line tutorial: The effect of death on staff: Help the Hospice Current Learning in Palliative Care on-line tutorial http://www.helpthehospices.org.uk/clip/b/b-2/b-2-6.htm The following e-ELCA module: 07 – 06 Children & Bereavement
Notes:
Resources to support your learning Bereavement: Key facts. Royal College of Psychiatrists www.rcpsych.ac.uk/expertadvice/.../bereavementkeyfacts.aspx SCIE Social care TV Supporting staff in care homes (10 mins approx in length) http://www.scie.org.uk/socialcaretv/video-player.asp?v=supportingstaff Emotional care: British Lung Foundation http://www.blf.org.uk/Page/Emotional-care
What helps you to achieve a healthy work / life balance? Learners should demonstrate: - how their working life does not interfere with their own /home life. - working hours are not excessive eg working additional hours, more than one job. - how they relax when not at work eg hobbies, family time.
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Completed Activity Now learners have completed this activity we recommend they go back to their 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 they have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.
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Activity 5:
Web resources SCIE Social care TV Supporting staff in care homes . SCIE Social care TV (10 mins approx in length) http://www.scie.org.uk/socialcaretv/video-player.asp?v=supportingstaff Carers' needs . SCIE . Access via Dementia Gateway: End of life care
http://www.scie.org.uk/publications/dementia/endoflife/needs.asp
how many facial expressions you can identify correctly.
On-line quiz. “ How many facial expressions you can identify correctly.?”
Access via following link:”Emotional Intelligence Quiz | Greater Good”
How bereavement affects adults http://www.bbc.co.uk/health/emotional_health/bereavement/bereavement_effectsadults.shtml Dick and Di planned a formal, ritual goodbye… Video clip This can be found on the below link and then you will need to scroll down to the above title. http://www.healthtalkonline.org/Dying_and_bereavement/Caring_for_someone_with_a_terminal_illness
CRUSE Bereavement Care
http://www.crusebereavementcare.org.uk/
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 Emotional care: British Lung Foundation http://www.blf.org.uk/Page/Emotional-care
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Activity Sheets
PowerPoints/ Lesson Plans Slide 21, 22, 23, 24, 25, 26 & 27 – Powerpoint: Supporting individuals during the last days of life.
E- learning Resources 15 minute on-line tutorial: Bereavement: 1: “The loss begins….:” Help the Hospice Current Learning in Palliative Care on-line tutorial 15 minute on-line tutorial: http://www.helpthehospices.org.uk/clip/b/b-1/index.htm 15 minute on-line tutorial: The effect of death on staff: Help the Hospice Current Learning in Palliative Care on-line tutorial. 15 minute on-line tutorial: http://www.helpthehospices.org.uk/clip/b/b-2/b-2-6.htm e-ELCA module: 07 – 06 Children & Bereavement
Further Reading Bereavement. Support after death. Age UK Downloadable from the following link or order paper copy from Age UK http://www.ageuk.org.uk/Documents/EN-GB/Information-guides/AgeUKIG32_bereavement_inf.pdf?dtrk=true Bereavemnt: Key facts. Royal College of Psychiatrists. http://www.rcpsych.ac.uk/expertadvice/problems/bereavement/bereavementkeyfacts.aspx
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Activity 6 – Was it a ‘good death’?
___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 5). Those highlighted green are the ones learners will cover when they have successfully completed it.
1.1 1.2
2.1 2.2 2.3 2.4 2.5
3.1 3.2 3.3 3.4
4.1 4.2 4.3
5.1 5.2 5.3 5.4 5.5
6.1 6.2
Assessment Method: Scenarios Assessment Type: Knowledge
Tutor/Assessor Guidance: From the learning activities already completed learners have gained knowledge about what needs to be in place to ensure achievement of a ‘good death’. This learning activity gives them the opportunity to test their knowledge.
Activity 6: Was it a good death?
Approximately 3 hours
Below are two scenarios. Look at each one and decide if you consider a ‘good death’ was achieved. First watch the video clip: Supporting good end of life: a case study. Harry’s story - My home life. Available on the link below (you will need to scroll through the videos until you come to it): http://www.myhomelifedvd.org.uk/ Then read Maud's story below. For each scenario make notes of your thoughts on why it was or was not a ‘good death’. Think about:
What was put in place?
How was it decided Harry and Maud were dying?
Was comfort and dignity maintained, including after death?
Who was involved in the care before death?
How was the care after death delivered and who was involved in this care?
The emotions and feelings of those involved
Was equitable care evident?
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Scenario 1 - Harry’s story. Notes: Answers available in tutors notes This scenario may be delivered as part of a lesson.
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Maud’s story: Maud, age 79 years, has Parkinson’s disease and has lived in a Care Home for the past 10 years. Residents and staff are very fond of Maud and one resident, Elsie, has formed a close friendship with her. Maud’s only family is a grand-daughter, Emily, who is next of kin. Emily has two children age 12 and 7yrs. They live 100 miles away but try to visit monthly. Maud has had an increasing number of hospital admissions for treatment of chest infections over the past 12 months. On Friday staff suspect Maud is developing another chest infection and she is also having difficulty swallowing oral medication. They request a visit from the GP who informs staff that Maud is for ‘T.L.C’ (tender loving care) and suggests they contact the out-of-hours doctor if any problems occur over the weekend. T.L.C. is a term sometimes used to suggest the individual is now dying and the treatment is for them to be kept comfortable. At around 1am on Saturday morning Maud becomes agitated and restless leading care staff to believe that she may be in pain. They call the out-of-hours doctor service and the duty doctor asks staff about Maud’s medical history. The doctor arranges hospital admission as he feels antibiotics, via a ‘drip’ intravenously, are needed. The doctor arranges ambulance transport to the Accident & Emergency (A&E) department as Maud has to be assessed there before ward admission can be arranged. Due to limited number of staff on duty at night no-one can accompany Maud in the ambulance.
Five hours later the care home staff receive a phone call from Maud’s granddaughter Emily. She has just received a phone call from the hospital to inform her that Maud died about 3 hours after leaving the care home, in the A&E. department. Maud was awaiting admission to a ward when she suffered a cardiac arrest. Attempts at cardiopulmonary resuscitation were unsuccessful.
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Scenario 2 Maud’s story Notes: Answers available in tutors notes This scenario may be delivered as part of a lesson.
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Completed Activity Now Learners have completed this activity we recommend they go back to their 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 they have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.
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Activity 6:
Web resources Harry’s story - My home life. Available on the link below (you will need to scroll through the videos until you come to it): http://www.myhomelifedvd.org.uk/ SCIE Social care TV Supporting staff in care homes . SCIE Social care TV (10 mins approx in length) http://www.scie.org.uk/socialcaretv/video-player.asp?v=supportingstaff Carers' needs . SCIE . Access via Dementia Gateway: End of life care
http://www.scie.org.uk/publications/dementia/endoflife/needs.asp
how many facial expressions you can identify correctly.
On-line quiz. “ How many facial expressions you can identify correctly.?”
Access via following link:”Emotional Intelligence Quiz | Greater Good”
How bereavement affects adults http://www.bbc.co.uk/health/emotional_health/bereavement/bereavement_effectsadults.shtml Dick and Di planned a formal, ritual goodbye… Video clip This can be found on the below link and then you will need to scroll down to the above title. http://www.healthtalkonline.org/Dying_and_bereavement/Caring_for_someone_with_a_te
rminal_illness
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
Activity Sheets Scenarios in learners work book may be used as lesson activity PowerPoint’s/ Lesson Plans All slides – Power point: Supporting individuals during the last days of life. ( Slides 28, 29, 30 & 31may be used if scenarios are used for individual lesson –slide 29, 30 & 31 provide answers)
E- learning Resources
Further Reading Department of Health End of Life Care Strategy (DH 2008) Royal college of Nursing –Spirituality – www.rcn.org.uk
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Activity 7 - Case study – the last days of life ___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 5). Those highlighted green are the ones learners will cover when they have successfully completed it.
1.1 1.2
2.1 2.2 2.3 2.4 2.5
3.1 3.2 3.3 3.4
4.1 4.2 4.3
5.1 5.2 5.3 5.4 5.5
6.1 6.2
Assessment Method: Case study Assessment Type: Knowledge
Activity 7: Case Study - the last days of life
About 5 hours
This activity is the opportunity for the student to demonstrate competence in caring for someone during the last few days. To fulfil this activity, learners will need to identify an individual for whom they have participated in caring, prior to, during and immediately after the last days of their life. The 25 questions below guide the learner to complete an in depth case study. They are also prompted to provide copies of all documentation, policies and procedures required to enable them to demonstrate their knowledge and competence. You may feel it appropriate to arrange an in depth discussion with your learner. To fulfil this activity you will need to identify an individual for whom you have cared, prior to, during and immediately after their last days of life. This case study offers you the opportunity to demonstrate your knowledge from completing this unit and your competence when caring for someone who is dying. Remember to incorporate information and tools from all learning activities where appropriate. A variety of evidence methods to support your learning may be incorporated into this case study. Alternatively, you may wish to arrange an in depth professional discussion with your assessor.
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You will need to produce evidence to demonstrate the following and include what organisational and national policies are in place that guide you when caring for a dying individual: You will need to produce evidence to demonstrate the following:
a) How was it identified the individual was entering the last few days of life?
b) Who was involved in making this decision?
c) What observations did you make?
d) What changes in care were necessary?
e) What additional resources did this necessitate being made
available e.g. equipment?
f) How was the individual’s wellbeing maintained during these last few days?
g) Explain what treatments / investigations / medications were stopped, continued or commenced and why?
h) Identify key workers or people who contributed to the care of the individual and their wellbeing. Were these key people accessible 24 hours a day? How was communication achieved between key people? How many people were involved in care throughout the last days of life?
i) What documentation was in place for recording and
communicating decisions and care? How did you record the changing needs of the individual?
j) Provide any examples of where communication worked well and/or where there was lack of communication.
k) What changes occurred when death was approaching?
l) How was it known the individual had died? Was anyone with them at the moment of death?
m) Who was notified when death was identified?
n) What care was provided after death? Include specific faith or cultural needs/requests.
o) How did the team know the needs/wishes of the individual
following death?
p) Who was notified when transfer of the deceased was required?
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q) What information was provided when transfer of the deceased
was carried out?
r) What precautions did you take in relation to prevention and control of infection when caring for and transferring the individual after death? What local and national policies are n place regarding this?
s) Describe how you supported others to understand the process
following death (this could be the family/close friends or co-workers)
t) What care and support was provided to relatives and close friends
following the death of the individual?
u) Was a comfortable and dignified death achieved? Did all those involved in the care consider this a ‘good death’? If not, what could have been done better?
v) If the individual had an advance care plan – what aspects were
applied to their care in their last days of life? If there wasn’t an advance care plan in place, explain how an advance care plan could have shaped the individual’s care.
w) What support was available for you and other team members, following the death?
x) Provide an example of a support system you used following the
death of an individual.
y) Include examples of national, local and organisational strategies, policies and guidelines which are in place to guide care of this individual.
Suggested answers for these questions are available in the tutor resource section, titled “L A 7 Case Study Tutor Assessor’s answers”.
Notes:
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Completed Activity Now Learners have completed this activity we recommend they go back to their 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 they have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.
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Activity 7:
Web resources
Activity Sheets
PowerPoint’s/ Lesson Plans All slides – Power point: Supporting individuals during the last days of life. This power point may be shown in LA7, to deliver an overview of all LAs. This may act as a refresher session prior to learners completing reflective case study.
E- learning Resources www.scie.org.uk -enter ‘scie spirituality’ in serch engine and you will reach Dementia Gateway and information about spiritual care to work through Further Reading Department of Health End of Life Care Strategy (DH 2008) Royal college of Nursing –Spirituality – www.rcn.org.uk
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Summary The good news is that you have nearly completed this unit! You have had the opportunity to learn the meaning of the term a ‘good death’. You have analysed how different individuals will want different things to achieve comfort and dignity in the last days of life. You have looked at factors which may contribute to a ‘good death’ not being achieved. You have looked at the changes which help to identify an individual is now in the last days of life. You have learnt how the needs, wants and wishes of the dying individual may be recognised including the importance of a holistic assessment. You have looked at some of the systems, and documentation, put in place to support dying individuals, and aid communication between the multi-disciplinary team You have explored possible causes of some of the main symptoms in the last days of life how they may be managed. You have learnt how, in your role, you may contribute to supporting a dying individual as part of a team. You have looked at who may form part of the multi-disciplinary team and those involved in decision making processes. You have explored how the recommendations, policies and guidelines produced nationally affect the standards of care expected in your working area. You have looked at how relatives and close friends caring for a dying individual may be supported. You have looked at how emotions and feelings may impact on the dying individual, and those involved in their care. You have explored the impact of changing needs in the last days of life. You have learnt the changes which help to identify an individual as being in the final hours of life, and following death. You have learnt the immediate action to be taken, including the importance of infection control measures. You have thought about how to access support for both you, and colleagues, when providing support to dying individuals and their relatives / close friends. You have been able to demonstrate your learning by producing a case study.
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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
2.1 2.2 2.3 2.4 2.5
3.1 3.2 3.3 3.4
4.1 4.2 4.3
5.1 5.2 5.3 5.4 5.5
6.1 6.2
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Appendix
Continuation sheet for photocopying as required
Glossary of Terms
Template Support Agreement
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Continuation sheets
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Glossary of terms
Term Definition
Assisted dying
The act of an individual who wants to die, asking, and receiving assistance of someone else, to help kill them. This act is illegal under English law.
Bereavement Support
This is the emotional support that is given to an individual to help them cope with the death of someone important to them. Bereavement support can be given before the individual’s death, whilst the individual is dying or after death.
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 2005. 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.
Culture
The shared knowledge, behavioural norms, values and beliefs that help people to live in families, groups and communities.
Equitable care
Individuals should receive the same high standard of care, in all care settings.
Euthanasia
The act of deliberately causing the death of an individual to relieve suffering. This act is illegal under English law.
Futile treatment
Treatment which is deemed unlikely to be of benefit to an individual. The most senior healthcare worker is ultimately responsible for making the decision that a treatment is futile. E.g. attempting cardio-pulmonary resuscitation in the last days of life may be deemed futile.
A ‘good death’
A term used in the National End of Life Care Strategy (2008) to describe a death where everything is as the dying individual wishes for. The comfort and dignity of the individual is maintained.
Grieving
To experience or express a sense of loss
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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.
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.
Multi-disciplinary Team
A team of health and social care workers who all have different roles and responsibilities. For example Social Worker, Doctor, Community Nurse, Dietician, Chaplain, Support Workers, Nurses, Occupational Therapists etc.
Non -pharmacological management
Managing symptoms without the use of medication. e.g. hand massage therapy.
Pain assessment tools
This is a method which helps you collect detailed information regarding an individual’s experience of pain. The information collected includes the type, intensity, location and pattern of pain. The tool can also be used to monitor changes in pain and the outcome of pain relief treatments.
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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):
