UNIT 302: Managing Symptoms in End of Life Care · 2015-04-24 · holistically care for an...

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UNIT 302:

Managing Symptoms in End of Life Care

Learner’s Workbook

Learning Activities

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Acknowledgements Skills for Care is pleased to acknowledge the work of St Luke’s Hospice Plymouth and Venus Training & Consultancy in researching and writing these learning materials. In the course of developing these materials they have drawn on the resources available through the National End of Life Care Programme, Social Care Institute for Excellence, Help the Hospices, e-ELCA and others. Skills for Care wishes also to thank all those individuals and organisations that supported the external consultation. All sources have been acknowledged and references have been cited at the point of contribution. This unit of learning has been developed and written by Paula Hine. BSc(Hons); PGCertEd; RGN 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

7

Section 2

Activity 1 – True, False, Why? (checks pre-learning knowledge for learning outcomes 1.2; 1.4; 2.2; 2.3; 2.4; 2.5; 3.2; 3.3 and 3.4)

15

Activity 2 – Thinking about people I care for (supports learning outcomes 1.1; 1.2; 1.3; 1.4; 2.1; 2.5 and 3.1)

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Activity 3 – Spot a symptom, ask a question (supports learning outcomes 1.3; 1.4; 3.1 and 4.2)

26

Activity 4 – Can I assess pain? (supports learning outcomes 3.1; 3.2; 3.3 and 3.4)

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Activity 5 – Match the symptom to the treatment (supports learning outcomes 1.2; 2.2; 2.3; 2.5 and 3.2)

40

Activity 6 – A.M.C. Assess, Monitor, Care (supports learning outcomes 2.4; 4.1; 4.2; 4.3 and 4.4)

52

Glossary of terms 59

Continuation sheets (for photocopying) 61

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Table 1: Learning Outcomes and Assessment Methods EOL 302: Managing symptoms in end of life care Unit level 3 Credit value 3 Study/activity hours 22 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 effects of symptoms in relation to end of life care

1.1 Identify a range of conditions where you might provide end of life care

Knowledge

1.2 Identify common symptoms associated with end of life care

Knowledge

1.3 Explain how symptoms can cause an individual distress and discomfort

Knowledge

1.4 Evaluate the significance of the individual's own perception of their symptoms.

Knowledge

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Table 1 continued




Assessment Type

Page No


2. Be able to manage symptoms of end of life care

2.1 Demonstrate a range of techniques to provide symptom relief

Competence

2.2 Describe own role in supporting therapeutic options used in symptom relief

Knowledge

2.3 Respond to an individual's culture and beliefs in managing their symptoms

Competence

2.4 Actively support the comfort and wellbeing in end of life care

Competence

2.5 Recognise symptoms that identify the last few days of life may be approaching

Knowledge

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Table 1 continued




Assessment Type

Page No


3. Understand how to manage symptoms of pain

3.1 Identify signs that may indicate that an individual is experiencing pain

Knowledge

3.2 Describe factors that can influence an individual's perception of pain

Knowledge

3.3 Describe a range of assessment tools for monitoring pain in individuals, including those with cognitive impairment

Knowledge

3.4 Explain how to maintain regular pain relief.

Knowledge

4. Be able to integrate symptom management in the care management process

4.1 Explain how symptom management is an important part of the care planning process

Knowledge

4.2 Regularly monitor symptoms associated with end of life care

Competence

4.3 Report changes in symptoms according to policies and procedures in own work setting

Competence

4.4 Support the implementation of changes in the care plan.

Competence

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Section 1: Introduction to EOL Unit 302 General Introduction This unit provides you with ways to develop your knowledge and skills to help you holistically care for an individual who is approaching the end of their life. The 302 unit will help you to identify which illnesses can become end stage or advanced terminal illnesses and how to recognise and manage the common symptoms related to these illnesses. It will also discuss how you should work with other professionals and services to help you manage the range of symptoms. 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 e.g. 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 e.g. a plan you have written.

This symbol means you will be asked to research some information. This might be through the internet, books and articles or from talking to people you know.

This symbol means your assessor will plan to conduct an observation of your practice or will examine a work product.

* Although every effort has been made to ensure video clips are appropriate, as they are often freely available to all, we cannot be held accountable for any inappropriate comments made about the clips. If you should see something offensive please following the offensive reporting guidelines of the web site concerned.

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For each activity you will see a clock symbol, which will provide you with a guide to how long the activity could take you. Remember this is a guide and the activity may not take as long as it says!

Each activity will signpost you to a range of resources to support your learning and where appropriate learning materials will be provided e.g. an information leaflet or a section of a website for you to read. As you complete the activities in each section, it will be important for you to log your evidence in the relevant evidence log that your awarding body has provided for you. You can see which learning outcomes each activity covers by the table at the top - below is an example; the learning outcome shaded in green is the one you have covered when you successfully complete the activity. Your tutor/assessor will support you to complete the activity, if you don't succeed at first they will give you further support to get it right!

1.1 1.2 1.3 1.4 2.1 2.2 2.3 2.4 2.5 3.1 3.2 3.3 3.4 4.1 4.2 4.3 4.4

Table 1 (page 4) shows you what learning outcomes you will have to achieve to pass this unit and what the assessment criteria will be. The table also identifies whether it is a skill or knowledge competency. The table also provides you with an optional ‘own evidence log’. This is so you can keep your own learning log and can discuss your learning and evidence with your tutor and/or your assessor. Keeping your own learning log can be a useful tool to help you keep track of your learning and progress. At the end of each activity you will be reminded to complete the evidence log.

Each section will outline the activity and provide guidance on how to do the activity. Look for this symbol to help you with ideas and suggestions on completing the activity.

Plagiarism and Confidentiality Plagiarism relates to claiming work to be your own when it is not. All work submitted must be your own and not copied from anyone or anywhere else unless the source of the information has been clearly referenced. Confidentiality is essential in all aspects of care and that includes during your learning. You may be asked to reflect upon aspects of your role and people for whom you provide end of life care but it is very important that you do not disclose any personal information about them. You must also be very careful not to include any evidence that relates to them in your portfolio e.g. photographs or documents with their details on.

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Portfolio of Evidence It is recommended you keep a folder to record all the evidence you collect for this unit. This will be your portfolio, which demonstrates your understanding on the subject and will help your tutor/assessor ensure you are meeting the learning outcomes. End of Life Care for All (e-ELCA) End of Life Care for All (e-ELCA) is an e-learning platform from the Department of Health and e-Learning for Healthcare (e-LfH) in partnership with the Association for Palliative Medicine of Great Britain and Ireland to support the implementation of the Department of Health's National End of Life Care Strategy (July 2008). The e-learning platform is aimed at health and social care staff working in end of life care. The e-learning enhances the training and education of these staff, increasing their confidence and competence to ensure well informed, high quality care is delivered to people at the end of their life. There are over 150 highly interactive sessions of e learning within e-ELCA. These are arranged in 4 core modules:

• Advance Care Planning • Assessment • Communications Skills • Symptom Management, comfort and well being

Also, there are 3 additional modules in social care, bereavement and spirituality. All of these sessions are freely available to NHS staff, social care staff who work in an organisation registered with the Skills for Care National Minimum Data Set (NMDS) or staff who work in a hospice. Staff who do not meet these criteria can register at a cost of £199. There are twelve sessions which are freely available to everyone, including volunteers and clerical and administrative staff on an open access website: www.endoflifecareforall.org.uk. For further details see 'Access the e-learning'. This is an additional resource and not mandatory for this unit as it may not be freely available to every learner.

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Providing the right evidence It is important that you provide the right type of evidence for the outcome you are trying to achieve. Remember there are 2 types of evidence:

a. Competence / Skill – This is where you need to demonstrate something about your practice.

b. Knowledge – This is where you need to demonstrate that you have learned and understood some new information.

Table 3 shows you the type of evidence that is acceptable for the type of outcome. Table 3: Suitable Evidence

Evidence methods 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 Reflective practice is a process which enables you to achieve a better understanding of yourself, your skills, knowledge and practice. Although most of us engage in thinking about experiences either before, during or after an event, we need to document our understanding in order to clearly identify our learning, consider the outcomes and evaluate the experience. The aim is to identify what we have learnt in order to find new or different approaches to our future practice, or to recognise when something was best practice. Learning comes from many different incidents and experiences that we have in life. We can learn much about ourselves, others, our job, our organisation and professional practice, as well as our abilities and skills, if we consciously take the time to reflect on our learning. A popular model of reflection is Gibbs 1988 – The Reflective Cycle. This is shown in the diagram below:

In some of the activities in this workbook, you will be asked to complete reflective accounts. We recommend that you follow the model above to ensure that you include everything.

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Introduction to understanding managing symptoms in end of life care:

A range of symptoms can be experienced at the end of life depending upon an individual’s illness. Symptoms are generally described as physical or psychological although these are often closely linked together. For example, pain causes fear and fear causes pain. In order to manage symptoms you will need an awareness of the common end of life illnesses and the symptoms caused by the illness. Each individual you support and care for will be different and they will cope with or view symptoms in different ways depending upon their past experiences and their spiritual, religious and cultural beliefs and views on life. Their social, environmental and financial situations also impact upon their ability to cope with the illness and manage the associated symptoms. End of life illness can impact greatly upon an individual’s family and friends so their concerns and needs should also be considered alongside or as part of the individual’s care. Therefore finding out (or assessing for) all of these aspects will help you follow a holistic and person centred approach when involved in assessing and monitoring an individual’s needs, developing their care plan and managing their symptoms accordingly. Working through the unit will also help to understand when and how you should work and communicate with other professionals to manage an individual’s care. This is important because some symptom management will be outside the scope of your role and due to the range of symptoms; end of life care management should always involve a team approach. Pre-learning assessment – Rate how confident you feel about your knowledge and understanding about managing symptoms in EoL.1 being not very confident and 5 very confident Confidence level 1 2 3 4 5

Knowledge of common EoL conditions

Knowledge of and recognising common symptoms at EoL

Recognising why each individual will experience symptoms differently

Know how to assess or find out about symptoms including pain

Understanding the impact of spirituality and beliefs on symptom management

Know how to manage a range of symptoms

Know how to monitor symptoms and report changes

Recognising and managing symptoms over last few days of life

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Section 2: Activities

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Activity 1 – True, False, Why? ___________________________________________________________________ Learning outcomes and assessment criteria This activity cannot be used as assessment evidence but has been designed to provide a general introduction and check out your pre-learning knowledge of symptom management in end of life care. The knowledge relates to the learning outcomes and assessment criteria (page 4) highlighted in green.

1.1 1.2 1.3 1.4 2.1 2.2 2.3 2.4 2.5 3.1 3.2 3.3 3.4 4.1 4.2 4.3 4.4

Assessment Method: Quiz Assessment Type: Knowledge The activity will also help you to highlight aspects of symptom management which you should read or learn more about. The topics have been selected because they are common misconceptions that generally require some clarification. Therefore it is important that you consider each statement in order for you to understand some key principles regarding symptom management within end of life care at this early stage of the module. This will help you make the right decisions at the right time and provide the appropriate support according to the symptoms that individuals are experiencing.

Activity 1: True, False, Why?

About 30 minutes

Step 1 Answer the following questions True (T) or False (F) Step 2 Give your reason for your answer – you may wish to discuss this with you Tutor. Step 3 Read through the recommended resources listed at the end of the section to find out if you got the answers right. Step 4 Make notes of the questions you need to learn more about.

Question T or F Why 1. End of Life care is only

given in the last few days of life

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2. Person-centred care means their needs are part of care planning

3. Palliative and End of Life care involves aggressive treatments of symptoms.

4. A ‘good death’ is when the individual’s symptom control is successful

5. An individual’s culture and belief does not impact upon the management of symptoms

6. Pain is the most common symptom to manage for those in end of life care

7. The Abbey Pain assessment tool is the only tool available for assessing pain

8. Adjuvant therapies (also described as non medicine treatments) are important in managing pain

9. Individuals who are taking opioids (these are the drugs which contain morphine) should also follow a bowel regime to prevent constipation

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10. All individuals indicate that they are experiencing pain in the same way

11. A person’s ability to cope emotionally at end of life can cause symptoms such as sleep disturbance, increased discomfort

12. During the last days of life, pain relief can be reduced

13. During the terminal stages of an illness, drugs that can cause respiratory depression (shallow breathing) are appropriate for the treatment of severe dyspnoea (breathlessness)

14. It is important to maintain a fluid intake in the terminal stages of care.

Now read through the recommended resources and make notes of what you need to learn more about. Notes:

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Resources to support your learning 1. What end of life care involves http://www.nhs.uk/Planners/end-of-life-care/Pages/what-it-involves-and-when-it-starts.aspx 2. Holistic common assessment of supportive and palliative care needs for adults requiring end of life care 2010 – National End of Life Care Programme in partnership with Cancer Action Team http://www.endoflifecare.nhs.uk/assets/downloads/HCA_guide.pdf

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3. NHS Direct Handout B27 – Use of palliative care medicines for patients and carers wwww.nhsdirect.nhs.uk 4. BBC (2006) Planning a good death http://www.bbc.co.uk/health/support/includes/planning_a_good_death.pdf 5. NHS (2012) Controlling pain and other symptoms http://www.nhs.uk/Planners/end-of-life-care/Pages/controlling-pain-and-other-symptoms.aspx 6. National End of Life Care Programme (2009) End of Life Care Learning Resource Pack 7. NHS Scotland 2010 - Pain Assessment for People with Cognitive Impairment / Communication Difficulties http://www.palliativecareguidelines.scot.nhs.uk/documents/PainassessCogimpairment.pdf 8. Macmillan Cancer Support / Marie Curie Cancer Care (2011) End of Life: The Facts. A booklet for people in the final stages of life and their carers 9. A Guide to Symptom Management in Palliative Care Version 5.1 February 2012Yorkshire Cancer Network Palliative and End of Life Care Group www.yacpalliativecare.co.uk/documents/download126.pdf 10. End of Life Signs http://www.livestrong.com/article/132939-end-life-signs/

Completed Activity Now you have completed this activity we recommend you go back to your own evidence log on page 4 and fill in the page number and type of evidence (e.g. case study or reflective account) for the assessment criteria you have completed in this activity. Remember – these are highlighted green in the grid at the start of each activity.

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Activity 2 - Thinking about people I care for ___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 4). Those highlighted green are the ones you will cover when you have successfully completed it.

1.1 1.2 1.3 1.4 2.1 2.2 2.3 2.4 2.5 3.1 3.2 3.3 3.4 4.1 4.2 4.3 4.4

Assessment Method: Reflective task and observation Evidence Type: Knowledge and competence Supporting individuals to manage the symptoms they are experiencing is a fundamental part of end of life care. It is important to remember that every individual will experience their illness differently and some will find some symptoms more distressing than others. This will be dependent on many things including the underlying condition causing the symptoms. Although each situation is different, there are recognised conditions which can progress to become advanced terminal illnesses and these can cause typical symptoms. These symptoms will present in different ways according to the stage of the illness becoming more prominent as the condition progresses to its end stage.

It is important that you are aware of these conditions and subsequently the symptoms which are associated with end of life care as you may have the most contact with an individual on a day to day basis.

You could be in the ideal position to notice when symptoms first occur, detect if the individual is experiencing their illness differently, or seems less able to cope with the symptoms.

Therefore this activity will help you to identify the range of conditions and symptoms that individuals can experience at the end of life. This knowledge will help you to further support individuals to access appropriate care, information and management as they require it.

Your knowledge of the conditions and the accompanying symptoms will vary according to which individuals you have cared for so you may need to access the recommended reading resources. This will help you to learn more about the management for symptoms or conditions you have less knowledge about.

As part of this activity your Assessor will need to conduct an observation of you demonstrating a range of techniques that you use to support individuals with symptom relief. This will be planned in advance with your assessor and must not be intrusive for the people you provide care to.

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Activity 2: Thinking about people I care for

About 6 hours

Think about the individuals you have looked after who were approaching the end of life:

1. What conditions did they have? If this does not represent a range of

conditions what other conditions may require end of life or palliative care? You should be able to identify at least six:

2. Think about 3 of these individuals; consider how each condition caused

different symptoms. In the boxes below, list the condition they had then the symptoms they experienced - you should be able to identify five to ten different symptoms:

Individual’s Condition:



Symptoms Experienced:



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3 a. Think of the individuals who experienced distress and discomfort – describe how they expressed this – what were they doing or saying? (Tip: this may not just be someone who is in pain – other symptoms cause distress and discomfort e.g. breathlessness, fear, confusion, weight loss)

3 b. If individuals experienced the same symptoms - did each individual cope with the symptoms differently? Why do people cope differently?

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4. Think of an individual you have cared for over the last few days of his/her life

Remember your Assessor will need to conduct an observation of you demonstrating a range of techniques that you use to support individuals with symptom relief. This will be planned in advance with your assessor and must not be intrusive for the people you provide care to.

What symptoms did they have which indicated they were dying?

Name any other symptoms which indicate someone may be dying? (Tip – read references 7, 8, 9 listed at end of section to help you with this question)

Describe how you supported them to manage their symptoms?

(Tip: your answer can also be used to evidence your knowledge and competence relating to unit 307 LO1, 2 and 3)

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Resources to support your learning

1. Gold Standards Framework (2006) Prognostic Indicator Paper vs 2.25 - © Gold Standards Framework Programme England 2005 Date: June 2006

http://gp-palliativecare.co.uk/files/prognostic_indicators_guidance.pdf

2. Holistic common assessment of supportive and palliative care needs for adults requiring end of life care 2010 – National End of Life Care Programme in partnership with cancer action team:

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

3. ELCA e-learning Free for all. Remember once you have completed ELCA modules, print off your certificate and place in your portfolio:

http://www.endoflifecareforall.com/ Symptom Management Module

4. ELCA e-learning (free registration). Remember once you have completed ELCA modules, print off your certificate and place in your portfolio:

www.e-lfh.org.uk/projects/e-elca/index.html

ELCA Course 04 - Symptom Management, Comfort & Wellbeing ELCA Course 04 – 20 – 22 – Emergencies ELCA Course 04 – 23 – 26 – Last days of life

5. Cancer Nursing Online Course (free registration) Remember once you have completed modules, print off your certificate and place in your portfolio www.cancernursing.org.uk

6. A Guide to Symptom Management in Palliative Care Version 5.1

February 2012 Yorkshire Cancer Network Palliative and End of Life Care Group

www.yacpalliativecare.co.uk/documents/download126.pdf

7. Salmon, I., Griffiths, C., Bridson, J. - Coping with dying Understanding changes which occur before death. Liverpool Care Pathway. Marie Curie

8. Macmillan Cancer Support / Marie Curie Cancer Care (2011) End of

Life: The Facts. A booklet for people in the final stages of life and their carers

9. NHS (2012) Controlling pain and other symptoms

http://www.nhs.uk/Planners/end-of-life-care/Pages/controlling-pain-and-other-symptoms.aspx

10. http://www.patient.co.uk/doctor/Terminal-Care.htm

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Activity 3 - Spot a symptom: Ask a question ___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 4). Those highlighted green are the ones you will cover when you have successfully completed it.

1.1 1.2 1.3 1.4 2.1 2.2 2.3 2.4 2.5 3.1 3.2 3.3 3.4 4.1 4.2 4.3 4.4

Assessment Method: Reflective task and observation Assessment Type: Knowledge and competence Having gained knowledge in how to recognise which symptoms are commonly related to what conditions, it is important to understand the process of assessment. In other words, finding out how symptoms are affecting the person and their ability to cope with the illness. Assessment in end of life care is a team process as this builds a holistic picture of the impact of the illness upon a person’s life; that is how symptoms affect individuals from a physical, psychological (emotional), social and spiritual point of view and what is it stopping them from being or doing? In your role you are not fully responsible for carrying out an assessment but you will play a valuable part in contributing to the process. As stated earlier you are in an ideal position to observe and notice the effects and changes in symptoms. It is vital that the individual with the illness remains central to the assessment discussion as they are the only ones who can truly tell you how the symptom is affecting them. That is to say, the experience of symptoms is very subjective. Individuals should always be asked if they consent to the assessment being undertaken and if individuals do not have the mental capacity to give their consent, a best interest decision must be made. An individual’s ability with regards to how well they are feeling will also influence the level of their involvement and the length of time an assessment will take. Throughout your assessment you should also be alert to an individual’s vulnerability and ensure that you protect and promote their rights and wellbeing at all times. You should follow you local safeguarding policies and procedures and promptly report if you have any concerns. The following activity will therefore help you to think about the types of questions you will need to ask to help decide which type and how much symptom relief is required.

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Activity 3: Spot a symptom; Ask a question

About 6 hours

1. Identify four questions you would ask if the person you provide

care for: Tip: Don’t forget to think about the emotional impact of the symptom as well as its physical effect.

Is in pain

Is

complaining of nausea

Appears frightened

Is very breathless

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2. Now think of individuals for whom you have cared with any two of these symptoms; consider:

a) What was their illness? b) How did they experience this symptom?

c) Would your questions have established enough about their

perception or experience of the symptom?

d) What else did you need to know about these symptoms to provide the care you gave?

e) What other questions could you have included in your answers

to question 1 to assess the symptom? Notes:

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You will need to demonstrate to your assessor that you can monitor symptoms associated with end of life on a regular basis. You could do this by presenting work products showing where you have carried out this role. Or you may decide between you that an observation is the best method. This is for you to decide together.

Resources to support your learning

1. Holistic common assessment of supportive and palliative care needs for adults requiring end of life care 2010 – National End of Life Care Programme in partnership with Cancer Action Team.

2. Taylor, J (2007) - The non-pharmacological management of breathlessness - End of Life Care 2007, Vol 1, No 1 P20-27

3. World Health Organisation (2004) Palliative Care: Symptom management and end-of-life care Integrated Management of Adolescent and Adult Illness Interim Guidelines for first level facility health workers.

f. Would these questions also help you to monitor the symptom and, if so, how?

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Activity 4 - Can I Assess Pain? ___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 4). Those highlighted green are the ones you will cover when you have successfully completed it.

1.1 1.2 1.3 1.4 2.1 2.2 2.3 2.4 2.5 3.1 3.2 3.3 3.4 4.1 4.2 4.3 4.4

Assessment Method: Written task and work products Assessment Type: Knowledge and competence Pain is a complex symptom that will be coped with and perceived differently by each individual. It can range in its intensity and there are many types of pain caused by different things. Therefore an assessment helps us to work out these things so we can choose the most appropriate treatment and who or what this should involve. An accurate assessment is very dependent upon the individual’s own description of their pain and, as with all areas of health and social care, the individual should remain central to any care planning and treatment choices. Although pain is not the most common symptom experienced in end of life care - this is fatigue (tiredness and weakness) - being in pain is the one symptom that most people fear. Most people would consider a peaceful and dignified death to be one where an individual dies with no pain. It is therefore important when caring and supporting an individual with a terminal illness that we know how to detect pain, assess its intensity and how it is affecting the individual’s life. The first part of the activity will help you to develop your understanding of pain and the types of tools that should be used when assessing and monitoring an individual’s experience of pain. Again, you may not be fully responsible for the assessment but as with other symptom assessment, you will have a key role in detecting and reporting early signs and monitoring effects of treatment and changes in the symptom. The second part of the activity will focus on how we help to find out about pain and its impact when an individual does not have the cognitive ability or mental capacity to clearly describe this, for example, someone with dementia, learning disability or from the effects of a stroke or brain tumour. There are many ways to do this with appropriate tools to use. Remember though, incorporating some of the techniques used in assessing individuals without capacity will make us more effective at assessing for pain and other symptoms generally.

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Activity 4: Can I Assess Pain?

About 3 hours

Part 1. Case Study - Read Patsy’s story: Meet Patsy

www.geriatricpain.org Patsy, aged 81 years, lives in a sheltered housing complex. She has a long term chronic heart condition and mild arthritis in her hands, shoulders and back. She has just been discharged from hospital after having her left hip repaired following a fall she had 5 months ago.

Although her heart condition has slowed her up of late in that she often got more breathless, had dizzy spells, the odd palpitations and headaches, until her fall (caused by a dizzy spell) she had been relatively independent about her flat. She often walked down to the nearby local shops or to the local chapel, where she used to be a lay preacher. She would still join in the regular prayer meetings and activities organised by the sheltered housing association. She is a widow of 40 years but her daughter lives close by and visits regularly and is very supportive but she is a busy working mum and grandmother. Occasionally her friends from the chapel call and although she finds socialising tiring she does gain strength from these visits. She enjoys listening to music and the plays on the radio and doing her cross-stitch. She feels she’s particularly lucky because she has a ground floor flat which opens onto the communal garden and she enjoys watching the birds that she normally likes to feed and seeing her neighbours pottering or visitors coming and going. Whilst in hospital she developed a chest infection and the wound on her hip has not completely healed, although the repeated infections in it do now seem to have resolved. A few weeks later...

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The Community Nurse is now visiting once a week. Drs are also concerned because she has become slightly anaemic (low iron in her blood) since the operation and despite taking iron tablets this is not resolving. She is slowly on the mend but has to spend long periods resting in bed as it is the most comfortable position for her leg, which although improving is still stiff and swollen which gets worse over the day. She has regular physiotherapy at the local community hospital but this is still quite painful for her and the journey to and fro does nothing to help this. She is a very stoic lady and does not believe in taking pain killers and has never been one for taking any more tablets than she has to. She has to take enough for her heart condition already. Besides they seem to make her very constipated and this adds to her discomfort. A few days later...

Patsy has now requested that she have help with washing and dressing and general activities although she is determined this is only going to be for a short time. She does not believe in idleness and has often been heard saying ‘idle hands are the work of the devil’! She has never had any patience with people who play on their illnesses. You have been asked to help Patsy out this morning but she appears less mobile today and she is complaining of feeling more pain in her leg. Part of your role will be to determine how the pain is affecting Patsy as you will have to report this to the association manager so she can keep the Doctors, Physiotherapist and Community Nurses informed of her progress.

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Now complete the following exercises to help Patsy describe her pain to you.

a. Asking the right questions

Rearrange the order of the questions and list beneath the appropriate title

Adapted from assessing pain in end of life care – Tribal Education Ltd 2012

Location Intensity Pattern Duration

How long does the pain last for example

minutes or hours?

What does the pain feel like?

To what degree is the pain limiting normal

activities?

When did the pain begin – for example

an hour ago, yesterday or months

ago?

How often does the pain occur?

Is the pain worst at a certain time of day?

(Arthritic pain is usually worst in the

morning, while chronic pain may be worst when a person

is tired.)

What could have started the pain

(movement, eating, pressure, or the way in which the

person was lying or sitting)?

What makes the pain go away – for example

rest, massage or movement?

Where is the pain?

Can you point to where the pain is?

Is there more than one type of pain?

Is it deep inside or on the surface?

Does it come and go, or is it constant? Is the pain in one

particular place or is it all over?

What other symptoms are present

Is it stabbing, burning, aching, throbbing or

piercing?

b. Draw three types of scales which would help assess, measure and monitor Patsy’s pain

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c. With reference to Patsy’s situation indicate on the body chart all the areas Patsy could be having pain?

www.hospiceworld.org

d. The Doctor has given Patsy a pain diary to use daily. How does this work and why will it help?

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e. What sorts of questions would you suggest would be in a pain diary?

2. Read the document – How will I know? Your Tutor/Assessor will provide you with a copy of this.

Now answer the following questions:

What clues would suggest that a person with dementia is in pain?

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If someone is in pain it may not always be caused by their end of life care. What other possible causes of pain would you be assessing for?

How would you know if a person was no longer in pain?

List some factors that can influence a person's perception of pain:

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3. Provide an anonymised example of assessment tools you have used to assess someone’s pain when they have a cognitive impairment. If you have not used one then provide an example of an available tool.

Give an example of another way of giving pain medication besides orally (by mouth)

How does this assessment tool vary from routine assessment tools?

What is the name of the tool?

Name another tool available:

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Resources to support your learning 1. A Guide to Symptom Management in Palliative Care Version 5.1 February 2012Yorkshire Cancer Network Palliative and End of Life Care Group www.yacpalliativecare.co.uk/documents/download126.pdf 2. NHS (2012) Controlling pain and other symptoms http://www.nhs.uk/Planners/end-of-life-care/Pages/controlling-pain-and-other-symptoms.aspx 3. World Health Organisation (2004) Palliative Care: Symptom management and end-of-life care Integrated Management of Adolescent and Adult Illness Interim Guidelines for first level facility health workers. 4. NHS Scotland 2010 - Pain Assessment for People with Cognitive Impairment / Communication Difficulties http://www.palliativecareguidelines.scot.nhs.uk/documents/PainassessCogimpairment.pdf 5. National Council of Palliative Care (2012) – How would I know? What can I do? How to help someone with dementia who is in pain or distress. London www.ncpc.org.uk 6. Kerr, D, Cunningham, C. Wilkinson, H (2006) Do you recognise pain in someone with a learning difficulty and dementia? http://www.jrf.org.uk/sites/files/jrf/pain-dementia-factsheet.pdf


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Activity 5 - Match the treatment to the symptom ___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 4). Those highlighted green are the ones you will cover when you have successfully completed it.

1.1 1.2 1.3 1.4 2.1 2.2 2.3 2.4 2.5 3.1 3.2 3.3 3.4 4.1 4.2 4.3 4.4

Assessment Method: Written tasks and professional discussion Assessment Type: Knowledge When an illness is described as end of life, it means it has advanced to a stage that it is incurable. However, the effects of its symptoms can be vastly reduced. That is why the aim of end of life care is to palliate (relieve or reduce) symptoms – this is where the term palliative care comes from. It is our role as health and social care workers to help individuals live well with the best quality of life possible until they die (Cecily Saunders – founder of the Hospice movement). Therefore, having worked out what symptoms an individual is experiencing and how they are coping or not coping physically, emotionally, socially and spiritually, we need to understand which treatments or interventions can provide relief from this symptom. Some treatments can completely resolve a symptom. For example, when an individual takes antibiotics for an infection then pain caused by the inflammation associated with the infection will go if the infection goes away. However, we also need to remember that the type and stage of the underlying illness can sometimes make this very difficult to achieve. This is why medical and non medical treatments or interventions should be provided by a range of health and social care workers with different skills to ensure all possibilities are considered. The following activity will help you think of the different non medical and medical treatments which are appropriate to relieve or reduce the common symptoms. You will not necessarily be involved in providing these but it is important that you know what they are because individuals may ask you why they are having certain things or they may need you to ask or find out where they can have these treatments. As with an assessment, individuals must give their permission for the treatment to be given or a best interest decision must be made if they do not have the capacity to give permission.

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Activity 5: Match the treatment to the symptom

About 4 hours

Have a professional discussion with your assessor/ mentor or refer to the recommended resources to help you complete the following questions

a. List the symptoms you have described in question 2 in Activity 2:

b. In the space provided, for each symptom give a brief outline of

the: (1) Common medicines used to treat each symptom (Pharmacological techniques) Your answer only needs to be brief as you only require a basic understanding of which drugs are given for each symptom because you may need to advise individuals and families when asked – ‘why am I taking this drug?’. You do not need to know doses. Under supervision, you may also be involved in helping individuals take the medication or monitoring and reporting the effect of the medication upon the symptom.

Symptom: Common medicines to treat:

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(2) Techniques used to treat symptom not using medicines (Non pharmacological techniques) Note: You may not have been responsible for carrying out the technique (for example giving a certain drug or complementary therapy)

Symptom:

Symptom:

Common medicines to treat:

Common medicines to treat:

Techniques to treat: Symptom:

Symptom: Common medicines to treat:

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c. Describe your own role in managing at least five of the symptoms?

Symptom 1: _________________________________________

Techniques to treat: Symptom:

Symptom: Techniques to treat:

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Symptom 2: _________________________________________ Symptom 3: _________________________________________ Symptom 4: _________________________________________ Symptom 5: _________________________________________

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d. Return to Patsy’s story – remind yourself about her situation. Earlier you assessed her pain. As Patsy lives on her own, how might you help her maintain regular pain relief? As well as ensuring she takes her regular medication, can you think of non medical ways which may help her feel more comfortable? e. Sadly Patsy’s illness has deteriorated. Her wound has become infected again. She has become increasingly breathless and it is taking more and more effort for her to get herself up in the mornings. She is even struggling to get to the bathroom which is worrying her because she would hate to have to use one of those commodes which the physiotherapist has said she can arrange for her. She is noticing that her fingers and toes are often quite blue now which only used to happen when her medication needed adjusting. She thinks the antibiotics she is taking for the infection in her wound is making her feel quite sick so she is reluctant to take them. She also doesn’t seem to have much of an appetite lately – she is even finding it hard to enjoy one of her usually many cups of tea. She is finding that all she wants to do is sleep although she doesn’t really drop off as she is feeling quite worried that this time she won’t be getting better. All she can think about is how her husband died from

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tuberculosis all those years ago and not many people were allowed to visit him. It only seems like yesterday and she will never forget that hacking cough. Although she has a strong faith and feels that this will help her when her time comes, she isn’t ready to say goodbye. You and your colleagues are now taking in turns to visit hourly and offer whatever help she requires. The Community Nurse calls every other day and the Doctor calls weekly unless called in between. Her daughter, family and friends pop in regularly when they can. In previous exercises you have considered how you can support an individual like Patsy with their physical symptoms. How might you respond to Patsy’s cultural, spiritual and religious needs? (Tip: Spirituality in Nursing Care Pocket Guide Royal College of Nursing provides some good pointers).

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f. Cultural and Spiritual issues often become associated with people’s religious needs. Religion can be described as a way of practicing your spiritual beliefs but spirituality does not have to involve religion. However it is important to recognise that an individual’s religious beliefs can affect how they wish to be cared for or supported. Similarly, different societal cultures have different rules and customs which may affect how they wish to be cared for or supported. This often concerns people because they think they will get it wrong. The best policy is to have awareness that every individual is different and that they may require different rituals or needs with regards their religious beliefs. Remember that talking to the individual and their loved ones will give you all the answers you need. However, an introductory knowledge is good so carry out a search of the key end of life care websites or resources to find references that will help you to identify some of these cultural and religious differences. (Tip: key in phrases such as: religious beliefs at end of life care, cultural and religious differences in end of life care, cultural and religious beliefs about death). Notes: Provide 3 examples of practices you may have to consider: 1. 2. 3.

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g. Can you recall when you have had to respond to an individual’s cultural, spiritual needs? Describe what this involved and how you felt at the time: What did you learn and how might you do things differently?

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h. Returning to Patsy - You, your team, the Community Nurse, her family and friends are now constantly caring for her. The Doctor believes that she could only have a matter of weeks to live.

What signs will you be looking out for which will identify that the last few days of her life may be approaching?

What will you do to make sure she remains comfortable and has a dignified death?

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Further resources to support your learning E-learning and Web resources 1. http://www.endoflifecareforall.com/ www.e-lfh.org.uk/projects/e-elca/index.html 04 - Symptom Management, Comfort & Wellbeing 2. Religious and Cultural beliefs http://www.mfghc.com/resources/resources_16.pdf 3. Supporting last days www.yacpalliativecare.co.uk/documents/download126.pdf Further Reading 4. A Guide to Symptom Management in Palliative Care Version 5.1 February 2012 Yorkshire Cancer Network Palliative and End of Life Care Group 5. Royal College of Nursing (2011) - Spirituality in nursing care: a pocket guide London 6. Basic Skills in providing spiritual care- http://endlink.lurie.northwestern.edu/eolc_religion_spirituality.cfm 7. World Religions & Religion, Spirituality and End of Life Care - http://endlink.lurie.northwestern.edu/religion_spirituality/religions.cfm 8. Chapter 7 - End of Life Care Resource Pack - Housing 21 www.housing21.co.uk 9. Macmillan Cancer Support / Marie Curie Cancer Care (2011) End of Life: The Facts. A booklet for people in the final stages of life, and their carers 10. World Health Organisation (2004) Palliative Care: Symptom management and end-of-life care Integrated Management of Adolescent and Adult Illness Interim Guidelines for first level facility health workers. 11. NHS (2011) Improving End of Life Care for People with Learning Disabilities Resource Pack 12. Salmon, I., Griffiths, C., Bridson, J. - Coping with dying Understanding changes which occur before death. Liverpool Care Pathway. Marie Curie

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Activity 6 – A.M.C - Assess, Monitor, Care. ___________________________________________________________________ Learning outcomes and assessment criteria This activity links to the following learning outcomes and assessment criteria (page 4). Those highlighted green are the ones you will cover when you have successfully completed it.

1.1 1.2 1.3 1.4 2.1 2.2 2.3 2.4 2.5 3.1 3.2 3.3 3.4 4.1 4.2 4.3 4.4

Assessment Method: Work product and written or oral task Assessment Type: Knowledge & Competence As you will have learnt from the earlier activities, caring for and supporting an individual in end of life care requires a systematic process of assessment and symptom management. This is an ongoing process as things can change very quickly when an individual is dying. The effects of symptoms can go up and down and sometimes a person can appear much better on one day and then less well another. Also, as an illness progresses the individual may be less able to cope with the symptoms or the treatments may become less effective. It will be your role to be observant at all times, always looking out for changes in an individual’s condition or the symptoms they are experiencing. You will also need to observe for the effects of treatments – did they relieve the symptom, how long did this effect last? This is called monitoring and is an important element of care. You should report these changes promptly so changes to treatments and the care plan can be made as required. As with all areas of care, you must be fully aware of the rules regarding data protection and confidentiality when carrying out assessments, caring or discussing an individual’s situation. It is therefore important that you understand the policies and procedures in your work setting which describe how you should do this. The following activity helps you to bring together the whole assess, monitor and care process by thinking about your role in assessing, monitoring and caring for an individual in response to their needs and any changes in their symptoms.

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Activity 6: A.M.C. Assess, Monitor, Care

About 2.5 hours

1. Provide an anonymised copy of a care plan for one of the individuals you have cared for (Tip – choose one of the individuals whom you already thought about when answering earlier questions). Write an account in the spaces provided to cover these points:

Why it was important to manage symptoms as part of their care plan?

What was your role in assessing their needs?

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How did you provide support and manage the symptoms according to their care plan? Include how you supported their comfort and wellbeing.

How the individual’s symptoms and needs changed?

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How you were involved in monitoring and reporting changes in their symptoms?

How did you help the individual cope with these changes?

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2. Having learnt more about symptom management in end of life care, do you think you should have done something differently? In other words, what would you do in the future if a similar situation arises? Notes:

Resources to support your learning You may wish to refer back to previous activity resources to support your learning. The following provide an overview. 1. NHS Choices End of Life Care http://www.nhs.uk/Planners/end-of-life-care/Pages/controlling-pain-and-other-symptoms.aspx 2. Patient.co.uk Terminal Care and symptom management http://www.patient.co.uk/doctor/Terminal-Care.htm


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Summary The good news is that you have nearly completed this unit! You have had the chance to learn how to recognise End of Life conditions and the common symptoms experienced by individuals during the last year of their life. You have thought about how these will change as an individual is dying. You have studied how to holistically assess, monitor and manage symptoms, learning how individuals experience and cope differently and therefore have different needs. You have also considered how illness and symptom management affects an individual’s family and friends. You have thought about how pain should be assessed, monitored and managed for individuals with and without cognitive ability. You have also looked into how spirituality and cultural beliefs affect symptom management throughout an individual’s illness and during the last few days of their lives. You have learnt how to support an individual and work with a multi-disciplinary team to manage the symptoms with dignity and according to their wishes and preferences throughout the illness and during the last few days of their life. As a last task, repeat the assessment you completed at the start of the unit to see if your confidence has increased and discuss this with your tutor/assessor. 1 being not very confident and 5 very confident Confidence level 1 2 3 4 5

Knowledge of common EoL conditions

Knowledge of and recognising common symptoms at EoL

Recognising why each individual will experience symptoms differently

Know how to assess or find out about symptoms including pain

Understanding the impact of spirituality and beliefs on symptom management

Know how to manage a range of symptoms

Know how to monitor symptoms and report changes

Recognising and managing symptoms over last few days of life

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CONGRATULATIONS! Once you have successfully completed all the activities and had them signed off by your Tutor / Assessor - you have completed all the learning outcomes and therefore completed the unit:

1.1 1.2 1.3 1.4 2.1 2.2 2.3 2.4 2.5 3.1 3.2 3.3 3.4 4.1 4.2 4.3 4.4

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Glossary

Term Definition

Advanced terminal illness

When an illness is no longer curable and has moved into its final stages. An individual will be approaching the end of their life.

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

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.

Cognitive ability Is able to think, concentrate, formulate ideas, reason and remember.

Cognitive impairment

This is when an accident or illness affects the ability to think, concentrate, formulate ideas, reason and remember.

Complementary Therapy

Complementary therapy is known by many different terms, including alternative therapy, alternative medicine, holistic therapy and traditional medicine. It aims to treat the entire person, not just the symptoms. Complementary therapy tends to be given alongside conventional medical treatments (drugs and surgery) or as an alternative option.

Culture The shared knowledge, behavioural norms, values and beliefs that help people to live in families, groups and communities

Consent Permission for something to happen or agreement to do something

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

Holistic

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

Informed consent

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

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

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Monitoring When we observe or gather information on changes in a person’s illness and symptoms or the effects of treatments given to manage the symptoms

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.

National End of Life Care Programme

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

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.

Palliative Care

Palliative care is a holistic approach that improves the quality of life of individuals and their families facing problems associated with incurable and life-threatening illness. It aims to control symptoms to provide relief from pain and other distressing or debilitating symptoms.

Palliate Relieve or reduce symptoms Person centred care

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

Prognosis

The prediction of the chance of recovery or survival from an illness.

Terminal Illness When an illness is no longer curable Therapeutic options

Relates to the treatment choices available to manage symptoms

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Continuation sheets

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Continuation sheets

UNIT 302: Managing Symptoms in End of Life Care · 2015-04-24 · holistically care for an...

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Transcript of UNIT 302: Managing Symptoms in End of Life Care · 2015-04-24 · holistically care for an...