Toolkit for Compassionate End-of-Life Care
2nd Edition, updated 2024
Irish Hospice Foundation
Toolkit for Compassionate End-of-Life Care
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Contents
Introduction ........................................................................................................ 3
1. Dying in Ireland ........................................................................................... 4 Helpful deʚnitions ................................................................................... 5
2. Communication ........................................................................................... 7
Getting the basics right .......................................................................... 7
Communicating through personal protective equipment (PPE) ..................................................................................... 10
Breaking bad news ................................................................................. 11
Breaking bad news over the phone ...................................................... 13
Breaking bad news that a person has died ....................................... 15
Breaking bad news that a person has died over the phone ............... 17
Giving bad news to children ................................................................. 18 Answering diʜcult questions ................................................................ 18 Dealing with conʛict ............................................................................. 20 Oʙering condolences and words of comfort ..................................... 21
3. End-of-Life Care Planning and Preparation .......................................... 22
Advance care planning ......................................................................... 22
Advance Healthcare Directives ............................................................ 24
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4. Care of the Dying Person ......................................................................... 26
Recognising when death is imminent ................................................. 26 The ʚnal hours: when dying is imminent ............................................ 27
Spiritual care at the end of life ............................................................ 28
Caring for a person who is dying ........................................................ 28
Considerations for infection control ................................................... 30
Supporting family and friends when a person is dying .................. 32
Facilitating family meetings ................................................................ 34 Supporting families: additional considerations related to infectious diseases ............................................................................ 34
5. Care After Death ....................................................................................... 36
Care of the body after death .............................................................. 36
End-of-life care ceremonial resources ................................................ 37
Providing care for those who are grieving for a person who has died ............................................................................. 37
Post-mortem examinations ................................................................... 39
6. Caring for Staʙ .......................................................................................... 41
Self-care in end-of-life care ................................................................... 41
Team care ................................................................................................ 42
Suggestions for self-care ...................................................................... 43
7. Useful Resources and Websites .............................................................. 44
Irish Hospice Foundation
Toolkit for Compassionate End-of-Life Care
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Introduction End-of-life care is everyone’s business
is is the second edition of the Toolkit for Compassionate End-of-Life Care , which has been produced, amended and updated by Irish Hospice Foundation (IHF). We are a national charity that addresses dying, death and bereavement in Ireland, whether a death occurs in hospital, a nursing home or other residential setting, a hospice or at home. Our aim in developing this toolkit is to provide healthcare workers with information, guidance, language and resources that will support them in caring for those who are dying and their family and friends . We believe that end-of-life care is everyone’s business, and we hope that all healthcare workers, regardless of setting, will find value in this toolkit appropriate to their role. It has been divided into clear sections so that the reader can dip into the section that is most relevant to them at a point in time. We have tried to address issues that apply broadly to anticipated or expected deaths in adults, and have not focussed specifically on other deaths, such as death by suicide, sudden deaths, stillbirths, deaths in children and young people, or on other issues such as cultural considerations. Information on all of these and on many other issues around dying, death and bereavement is available on the IHF website: www.hospicefoundation.ie Medical management at end of life and other clinical or legal considerations are outside the scope of this publication, and guidance on these matters should be sought from appropriate colleagues and from other recognised sources who can offer expert advice and support. We hope this toolkit will support healthcare workers in their everyday interactions with patients, residents and their family and friends as they provide a compassionate, person-centred approach to end-of-life care. Important Note: Please note that this toolkit has been compiled by IHF to support those who are caring for patients and residents at end of life, and the views expressed are those of IHF. Neither IHF nor any person acting on its behalf can be held responsible for any use made on the information in this publication. It is not intended to replace medical or legal advice.
Introduction
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1.
Dying in Ireland
Every day in Ireland, approximately 100 people die, and up to 10 people are impacted by each death. That means around 1,000 people will be newly bereaved. Every death matters – and we only have one chance to get it right. IHF’s vision is an Ireland where people experiencing dying, death and bereavement are provided with the care and support they need. We want more people in Ireland to have a good death and we want appropriate information and support to be available to the bereaved. The majority of deaths will occur in a healthcare setting, either an acute hospital or a long- term residential facility (see chart below using CSO ʚgures from 2018).
For many years, IHF has worked in collaboration with the HSE and other care agencies to promote understanding, information and awareness about what constitutes good end-of-life care. The Hospice Friendly Hospitals (HFH) Programme is an initiative of the IHF in partnership with the HSE. It was established in 2007 to introduce a strategic and focused approach to the improvement of end-of-life care in acute hospitals. The HFH Programme aims to improve the experiences of patients and their families in acute hospitals and supports staʙ well-being. Adult, paediatric and maternity hospitals and units nationwide are engaged with the HFH programme and working to improve end-of-life care in their respective setting.
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Dying Well at Home (DWAH) is a programme to support individuals who wish to die at home and for those caring for them. e programme aims to facilitate end-of-life care by collaborating with, supporting and working with patients, their families and the wide array of healthcare professionals who provide end-of-life and palliative care in the home. Nurses for Night Care, supported by the HSE, continues as part of DWAH, supporting people with non-malignant life-limiting conditions in their final days to die at home. Caru is a quality improvement programme for nursing homes developed by IHF in partnership with the All Ireland Institute of Hospice & Palliative Care (AIIHPC). It enables staff to deliver compassionate, person- centred end-of-life care to residents and their relatives and friends through a programme of training and development workshops, regional network events and ongoing supports. See www.caru.ie for details.
More information on IHF healthcare programmes can be found on www.hospicefoundation.ie
Helpful deʚnitions Here are some key terms and phrases you will come across throughout this toolkit. Terms are presented in alphabetical order and are defined as we understand and use them in IHF. • Bereavement care – Support, information and services available to bereaved people through their families, friends, communities, workplaces, healthcare providers and education systems, regardless of the circumstances of their loss. • End-of-life care/Care at end of life – We use these terms to refer to all aspects of the care relating to dying, death and bereavement provided towards the end of life. In this context,‘end of life’can be from the moment someone receives a life-limiting diagnosis, through the months before death, up to and including the final hours – a continuum rather than a point in time. We use ‘end-of-life care’ to refer to the care of people with advanced life-limiting conditions, for whom death within one to two years is likely, as well as those in the terminal phase of illness. It also encompasses care of the remains of the deceased person. • Life-limiting illness / condition – A condition or illness from which there is no reasonable hope of cure and from which a person is expected to die. • Palliative care – Palliative care is a term for the type of care provided to people with life-limiting conditions by hospices and in many other care settings. It is the term most commonly used by people working in medical or healthcare settings.
e statistics in the graphic at the top of this page are from the following sources: • Vital Statistics Yearly Summary 2022 - CSO - Central Statistics Office • Matthews, S., Pierce, M., Hurley, E., O’Brien Green, S., Johnston, B.M., Normand, C. and May, P. (2021) Dying and death in Ireland: What do we routinely measure and how can we improve? Dublin: Irish Hospice Foundation. • Ashton M. Verdery, Emily Smith-Greenway, Rachel Margolis, and Jonathan Daw (2020), Tracking the reach of COVID-19 kin loss with a bereavement multiplier applied to the United States , https://www.pnas.org/doi/full/10.1073/ pnas.2007476117
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e palliative approach focuses on the prevention and relief of suffering by means of assessing and treating pain and other physical, psychologial or spiritual problems. e aim of palliative care is to enhance quality of life and wherever possible to positively influence the needs of illness. Many people mistakenly believe that you can only receive palliative care when other treatments are no longer possible. Palliative care can be provided to people of any age and at any stage of their illness. e Adult Palliative Care Services: Model of Care for Ireland ( e National Clinical Programme for Palliative Care, 2019) sets out how the provision of palliative care is structured in three levels:
Level One: Palliative care approach:
• Palliative care principles should be practiced by all healthcare professionals. e palliative care approach should be a core skill of every clinician at hospital and community level. Many patients with a progressive and advanced disease will have their care needs met comprehensively and satisfactorily without referral to specialist palliative care units or personnel.
Level Two: General palliative care:
• At an intermediate level, a proportion of patients and families will benefit from the expertise of healthcare professionals who, although not engaged full time in palliative care, have had some additional training and experience in palliative care, perhaps to diploma level. Such intermediate level expertise may be available in hospital or community settings.
Level Three: Specialist palliative care:
• Specialist palliative care services are those services whose core activity is focused to the provision of palliative care. ese services are involved in the care of patients with more complex and challenging care needs, and consequently, require a greater degree of training, staff and other resources. Specialist palliative care services, because of the nature of the needs they are designed to meet, are analogous to secondary or tertiary healthcare services.
is toolkit aims to support healthcare staff to provide a Level 1 - Palliative care approach .
Palliative Care Booklet “Palliative Care: What is it and who is it for” by Irish Hospice Foundation is a useful resource for you, your patients and the people close to them, answering frequently asked questions on palliative care. Scan the QR code to download a copy.
Palliative Care What is it and who is it for?
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Communication 2.
Getting the basics right
When we communicate with another person, we make our impact through: • Non-verbal communication (sometimes called our body language) – how we dress, how we stand or sit, our eye contact, hand gestures, facial expressions; • Tone of voice, our accent, pitch and volume; and • e words we use.
Knowing how we make our impact can help us to be more effective communicators.
Tips for impactful communication
Non-verbal •
Always have your name badge where it can be seen. • Be appropriately groomed - look clean, tidy and professional. •
Where possible, make eye contact throughout the conversation and have your eyes at the same level as the person you are talking with. Sometimes it is our own discomfort that prevents us from making appropriate eye contact. If this happens to you, you can stare at the space at the top of the nose between the eyes – this gives the person the sense that you are making eye contact, but may be more comfortable for you.
Communication 2
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Toolkit for Compassionate End-of-Life Care
• Use open body language. Consider your proximity, balancing personal space and privacy. Mirroring the other person’s body language (their seating position, posture, gestures and expressions) is a good way to show empathy, create a bond and enhance the connection. Use ‘open’ body language with open palms and unfolded arms and legs. If standing, come into the person’s space; don’t have a conversation from a doorway. Check the direction of your feet. Often we communicate to people with our heads turned one way but our feet facing in another direction. is gives the impression that you are not fully engaged with the person. • Avoid having a desk or other object (e.g., a clipboard or notes) as a barrier. • Use touch and gestures appropriately, again being aware of cultural sensitivities – take your cue from the person you are talking with. • All of the above is even more important if you are wearing a face mask and personal protective equipment (PPE). Tone of voice • Use your tone to convey the meaning of your message. When a situation calls for sincerity and empathy, be sincere. • Have a welcoming gentle tone to enhance the sharing of information. • You may need to raise your speaking volume if you are wearing a face mask. Speaking a little slower should help you to be heard better by the other person.
“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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Words • e words we use are very important. An inappropriate phrase can alter or undermine your message. • Avoid medical terminology and jargon. • Avoid using euphemisms, which can lead to confusion. Use words like ‘dying’, ‘died’, ‘dead’.
• If there is a mismatch between the words you use and the body language and tone of voice, then the words will lose their impact. e person will assign a meaning from the non-verbal communication and the tone of voice.
Useful resource: Discussing Dying e Discussing Dying short film has been developed by NHS Education for Scotland, with input from IHF, and aims to help healthcare professionals discuss dying openly and honestly with their patients.
Communicate clearly and honestly • Use simple language as this helps you get your message across. • Check if the person needs assistance in understanding information/the words used. • Consider age, cultural, cognitive and language abilities. • Avoid jargon and euphemisms. • Acknowledge difficult questions and respond appropriately based on your role. • ink of creative ways to demonstrate your message (e.g., draw pictures, use photos, images or videos). • Be comfortable with silence. • Paraphrase information and check understanding.
Sample phrases
What makes you ask that today?
What is your biggest worry at the moment? Help me understand what would help or comfort you.
I don’t know, but I will try to find someone who can help.
Would you like me to repeat that?
What do you understand by that?
I’ve given you a lot of information. Take some time to think about what we have spoken about, and we can chat again if you have further questions.
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Irish Hospice Foundation
Toolkit for Compassionate End-of-Life Care
Communicating through personal protective equipment (PPE) Following the impact of the COVID-19 Pandemic, patients/residents and their families have found themselves in a completely changed environment, where the need for strict infection prevention and control procedures can impact on the end-of-life care experience. is may lead to heightened feelings of upset and anger, abandonment and isolation, confusion, fear and a sense of being out of control. is is a difficult situation for anyone to be in. It is important to acknowledge those feelings and offer comfort and reassurance. Having clear communication channels to provide information and respond to queries is vital.
Show the person who you are and make the human connection
In the interactions you have with patients/residents, relatives and friends, try not to let PPE become a social barrier. People in isolation may need to feel a connection with others even more.
•
“Hello, my name is . . .”
• Place a photo of you and/or write your name on the outside of your PPE.
Be a comforting presence
If you’re wearing PPE, your body language, tone of voice and eye contact are even more important. Your smile and warmth can be conveyed through your eyes, even if you’re wearing a face mask.
Move slowly if you can. Enter the person’s room gently.
Acknowledge emotions and feelings
Ask how the person is feeling. Provide information, reassurance, words of kindness. Focus on maintaining hope – think about what can be done and what can be done well. - ‘I can help you contact your loved ones.’
- ‘I can be here with you if you are frightened.’ - ‘I can help to make you feel more comfortable.’ - ‘I can help your mother to feel more comfortable.’ - ‘I will take care of your father.’ - ‘I am here for you.’
Communication 2
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Breaking bad news News is any information that seriously affects a person’s view of their future. 1 It is the person receiving the news that decides if it is bad. As healthcare workers , we always need to be conscious that whenever we have to give a person information, for example, of a test result, a diagnosis, a change in condition. is may be perceived as bad news to that person. ink of breaking bad news as a process, not as a single event. It may take the person several conversations before they are able to grasp all that you are saying, especially if the information is complex.
Here are five recommended steps for breaking bad news:
Step 1: Prepare yourself
• Prepare, mentally and emotionally - think about yourself, the other person and the news itself. • Set time aside. Find a quiet, private room where you can avoid interruptions. Leave your phone or pager with a colleague. Never give sensitive news in public places, such as corridors. • Know the facts. Make sure you have the right person and the right results/news. Have options or treatment plans prepared to discuss with the person as appropriate. • If you are unable to stay with the person while they process the news, make sure there is someone who can.
Step 2: Make a good connection
• Welcome them, tell them your name and your role, and and ask them to take a seat. Sit down yourself and ensure your body language is open and engaging. • Find out what the person already knows: - “How were you feeling coming in here today?” - “How have you been since I saw you last?” - “What do you already know about your illness?” - “I haven’t met you before today. Maybe we could start off with you telling me a bit about your illness and how you’ve come to be here today?” • Find out how much they want to know: “I have your results—are you the sort of person who likes to know a lot or a little?” Remember that they have a right to know and to NOT know.
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1. Buckman R. (1992) How to Break Bad News: A Guide for Health Care Professionals. University of Toronto Press, Toronto
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Step 3: Prepare them, and then be gentle as you deliver the news
Here are some example scenarios: •
Prepare them for what is coming next: “I wish I had better news to give you today”, “I’m sorry, but the news isn’t as good as we’d hoped it might be”, “Unfortunately, I have some bad news for you”. • Pause. Allow the warning to land. • Gently deliver the news using clear simple language and avoid jargon and euphemisms: “ e lump in your breast is cancer”. • If the news is complex, break it into small chunks. en check that the person understands what you have said, for example: “Can you tell me in your own words what you understand we’ve talked about?”
Step 4: Acknowledge the shock •
Even if the news was anticipated, hearing the confirmation can be a shock. It is important to acknowledge the emotional impact of the news: “I can see this news has come as a shock”, “I can see this is upsetting for you to hear”. • Give the person time; allow a silent pause. • Deal with the person’s concerns before you deal with questions of detail: “What is your biggest concern right now?”
Step 5: Plan for the future •
Give a clear plan as to what will happen next. Depending on how the person responds to the news, it might be appropriate to discuss treatment options or it might be better to make a plan to discuss further options at another time. It is useful to have written information available to enforce your spoken message. • e person affected by the news might be worried about how they are going to tell others. Offer to support them with this. Always make sure you have the person’s permission before giving information to others. • Find out if there is anyone in particular the person would like to talk to, for example , a social worker, or pastoral care. • Avoid phrases like “there’s nothing more we can do” - a better way is to say something like “ ere isn’t any specific treatment to make your illness go away, but there is a lot we can offer to help you to cope.” • Provide the name and number of a support person they can call if they have further questions. • Document the details of the discussion, using the same language used in the conversation, and the follow- up plan in as much detail as possible.
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Breaking bad news over the phone Ideally , bad news should be given in person . However, there may be times when this is not possible, and you have to deliver the news over the phone. ink of breaking bad news as a process, not as a single event. It may take the person several conversations before they are able to grasp all that you are saying, especially if the information is complex.
Here are some tips for breaking bad news over the phone:
Step 1: Prepare yourself • Prepare, mentally and emotionally - think about yourself, the person receiving the news and the news itself. • Set time aside. Find a quiet private room to call where you can avoid interruptions. • Know the facts. Make sure you have the right person and the right results/news. Have options or treatment plans prepared to discuss with the person as appropriate. Step 2: Make a good connection • Identify yourself. Tell them your name, your role and where you are calling from. • Confirm whom you are speaking to. • Ask the person if they are sitting down and if anyone else is there with them. 2 • If you are delivering news of a death, then go to Step 3. • Find out what the person already knows: “How have you been since I saw you last?”, “What do you already know about your illness?”, “What do you know about how your mother/wife is doing at the moment?” • Find out how much they want to know: “I have your results—are you the sort of person who likes to know a lot or a little?” Remember that they have a right to know and to NOT know. Step 3: Prepare them, and then be gentle as you deliver the news • Prepare them for what is coming next: “I wish I had better news to give you today”, “I’m sorry, but the news isn’t as good as we’d hoped it might be”, “Unfortunately, I have some bad news for you”. • Pause. Allow the warning to land. • Gently deliver the news using clear simple language and avoid jargon and euphemisms: “ e lump in your breast is cancer”. • If the news is complex, break it into small chunks and check that the person understands each chunk: “Can you tell me in your own words what you understand we have talked about?”
Communication 2
2. Buckman R. (1992) How to Break Bad News: A Guide for Health Care Professionals. University of Toronto Press, Toronto
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Step 4: Acknowledge the shock •
Even if the news was anticipated, hearing the confirmation can be a shock. It is important to acknowledge the emotional impact of the news - “It is understandable if this news comes as a shock.” • Give the person time; allow a silent pause. • If there is another person with them, offer to speak to them. If they are alone ask them if there is anyone else they would like you to call. • Deal with the person’s concerns before you deal with questions of detail: “What is your biggest concern right now?”
Step 5: Plan for the future •
Give a clear plan as to what will happen next. Depending on the circumstances and on how the person responds to the news, it may be appropriate to discuss treatment options, though it is generally better to plan a discussion of further options at another time. • Offer to meet relatives or others with the person. ey might be worried about how they are going to tell others the news. Always make sure you have the person’s permission before giving information to others. • Find out if there is anyone in particular the person would like to talk to, for example, a social worker, or pastoral care. • Avoid phrases like “there’s nothing more we can do” - a better way is to say something like “ ere isn’t any specific treatment to make your illness go away, but there is a lot we can offer to help you to cope.” • Provide the name and phone number of a support person they can call if they have further questions. • Stay on the phone until the person indicates that they are ready to end the conversation. • Document the details of the discussion, using the same language used in the conversation, and the follow-up plan in as much detail as possible.
Communication 2
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Breaking bad news that a person has died e news of a death is difficult to give and even more difficult to hear. No one can ever prepare themselves to hear this news. Even if a death is expected, the news of the death will come as a shock, and how a person receives this news will likely stay with them forever. It is challenging to break the news that a person has died, but there are steps you can follow to help make the process easier.
Fives steps for breaking bad news when a person has died:
Step 1: Prepare yourself •
Prepare, mentally and emotionally - think about yourself, the other person and the news itself. It is important to be mindful of the issues that may arise within different death scenarios – for example, expected death, sudden death, the death of a child, miscarriage, intrauterine death, stillbirth, neonatal death. Prepare yourself as much as you can to be able to support relatives and friends with both the practical and the emotional aspects of a relative dying. • Set time aside. Find a quiet private room where you can avoid interruptions. Never give bad news in public places, such as corridors. • Know the facts. Make sure you have the right person and the right results/news. • Arrange to have another member of staff with you, especially if you are unable to stay with the person while they process the news. • Take a moment for yourself before you break the news, as well as checking your appearance. Pause and take some deep breaths.
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Step 2: Make a good connection •
Introduce yourself; tell them your name and your role. • Ask them to take a seat. Sit down yourself and ensure your body language is open and calming and you maintain a good level of eye contact. • Build on their current understanding – this will be dependent on the circumstances surrounding the death. “Can you tell me what you understand about your mother’s condition?”, “Can you tell me what you have been told so far?” • Take your cue from their current knowledge about what information gaps you may need to fill. Step 3: Prepare them, and then be gentle as you deliver the news • Prepare them for what is coming next: “I wish I had better news to give you today”, “Unfortunately, I have some very bad news for you”. • Pause. Allow the information to land. • Gently deliver the news using clear simple language and avoid jargon and euphemisms. “Your mother has died”. • Use the words dead and died. While this may seem blunt, it avoids the confusion that euphemisms like ‘passed’ and ‘passed away’ might cause.
Step 4: Acknowledge the shock
• Even if the news was anticipated, hearing the confirmation can be a shock. It is important to acknowledge the emotional impact of the news. - “I can see this is a big shock for you”. • Give the person time; allow a silent pause. • ere is often a temptation to provide more information following the delivery of the bad news. However, in this situation it is important to allow time for the news to be absorbed. • Encourage the expression of emotion that comes as a reaction to the news. Allow silent pauses.
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Step 5: Plan for the future •
Deal with the person’s concerns before you deal with details. • Give a clear plan as to what will happen next – including details about spending time with their loved one. Reassure their relatives and friends that they are not alone and that staff are there to support them. • Find out if there is anyone in particular the person would like to talk to, for example, a social worker, or pastoral care. • Provide the name and number of a support person they can call if they have further questions. • Document the details of the discussion, using the same language used in the conversation, and the follow-up plan in as much detail as possible.
Breaking bad news that a person has died over the phone
• Find a quiet room and mentally prepare before dialling. Pause and take some deep breaths.
• Identify yourself and confirm whom you are speaking to.
• Ask if there is anyone else with the person.
• Suggest that the person you are speaking with sits down.
• Prepare them and pause before breaking the news gently, using simple language. “I’m afraid I have bad news”.
• Acknowledge the shock.
• Take your cue from the person’s response about what information gaps you may need to fill.
• Provide the contact name and direct line number for you/a colleague.
• Stay on the phone until the person indicates they are ready to end the conversation. Contact the hospital reception/security desk and inform that relatives and friends will be arriving and if possible arrange for parking near the entrance to the hospital.
• Document and liaise with the multidisciplinary team.
• Ensure a member of staff greets them on arrival at the hospital and ward or care centre.
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Giving bad news to children It is very upsetting to know that a family member or friend will die. is can be a very difficult time for a child if they do not fully understand what is happening. It is painful to see a child upset, but children do cope better with sad news when they are told the truth. Clear, age-appropriate language is the best way to communicate the news. Parents and guardians may find it helpful to get support from a friend or relative when they are breaking bad news to their child. Visit Irish Childhood Bereavement Network for more information: www.childhoodbereavement.ie Answering diʜcult questions
Working in healthcare, especially when dealing with people who are at end of life, often requires us to respond to these types of questions. ese questions are often asked at times we are not expecting them.
Answering difficult questions might make us feel uncomfortable, unsure about where the conversation is likely to lead and we may worry about ‘saying the wrong thing’. We often focus on keeping patients happy and comfortable and making them feel better. Sometimes we may respond with a jovial “you’re grand” or “don’t worry” or “not on my shift”. When a person (patient or resident) is concerned about something and they want to talk about it, they will choose who they speak to, and they will make this choice based on who they feel will be the best person to
‘This medication isn’t doing me any good. I don’t think I am going to make it, do you?’
have this conversation with. For the patient or resident, the best person is often a person whom they can trust, whom they feel will be most likely to listen to them and whom they feel will be empathetic. If the result is a closing down of the conversation, they might choose not to voice their concerns again. As a staff member, it is important to recognise that if a patient or resident chooses to have a conversation with you about what is worrying them, then it is because they believe you will listen and help. Your job is to accept that trust and explore their concerns with them within your role or appropriate to your role. You don’t need to have the right answers; it is not about that. It is about allowing the person to express what it is they are worried about, listening to them and then providing them with the support they need. While seeking out those who might help further is one part of these conversations, for many the provision of a kind, listening ear is often what is most beneficial. Whilst it is normal to feel uncomfortable when difficult questions are asked, it’s important not to panic and rush a response. Instead, gently probe to find out what lies behind the question: “What makes you ask that?” “Are you worried about something?” “Do you want to talk about what is worrying you?” “How can I help?”
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Toolkit for Compassionate End-of-Life Care
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“Am I dying?” is is a particularly difficult question to hear, listen to and answer. Using the responses listed above can help, but sometimes the person asking the question is looking for clarity. Maybe they have things they need to do, say or sort out, and are looking for an honest answer so they can plan for what is important to them. Often the person will have a sense that they are coming to the end of their life and are looking for another person to listen to them as they express this. It is important to be gentle but honest with a patient. If you do not know what to say, you might say, ‘I don’t know, but I can find someone who can talk to you about what you’re feeling.’ If you are aware that they are dying, you might say: ‘You are sick enough to die,’ or ‘Your mother is sick enough to die.’ Ask them what they are feeling, worried about or what other questions they might have. “Explaining to patient and/or family that the patient is ‘sick enough to die’ won’t make them sicker, but it will enable everyone to understand the gravity of the situation and to respond appropriately.” Talking about dying: How to begin honest conversations about what lies ahead . Royal College of Physicians, UK 2018 Tips for dealing with diʜcult questions: • Take a deep breath and pause before you answer. • Be genuine and compassionate. • Respond appropriately based on your role. • Give the person your full attention and listen to them - really listen. • Allow the person to express their thoughts and feelings. • Allow for silent pauses. • Use open-ended questions to gently find out what is on the person’s mind. • Be honest. It’s okay to say ‘I don’t know’ if you don’t. • It might be appropriate to say you cannot answer the questions but you will try to find someone who can. • Document the conversation and pass it to the relevant person. • Ensure you follow up and update the person with any further information. • Talk to a trusted colleague about how you feel.
Communication 2
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Irish Hospice Foundation
Toolkit for Compassionate End-of-Life Care
Dealing with conʛict End-of-life care is challenging work. When people are at their most vulnerable, raw emotions often come to the surface. Patients and those close to them may display anger towards you. Healthcare workers often have to manage these situations with sensitivity and compassion. Here are some tips for dealing with conflict: • Each conflict situation has three elements – you, the other person (or people) and the situation. You only have control over one of these elements – YOU. • You may have some knowledge of the situation, and you can use this knowledge to defuse things. • You have absolutely no control over the other person. Telling them to calm down or not to worry is probably not going to work! • Never lose your cool or become angry and upset. If you feel like this is going to happen, then withdraw from the situation. Seek support from a colleague who can intervene. • You can use your communication skills, conversation tone and volume to try and defuse a conflict situation using the following approaches: - If they are shouting loudly, you speak assertively but with lower volume. - If they are speaking fast, you speak at a slower pace. - If they are waving their arms around gesturing vigorously, you have to display calm, open and non- threatening body language. • Remember the heat of anger tends to flare passionately for only a short time. If you maintain your communication skills, you should be able to dampen the flames. • It is important to first and foremost acknowledge the other person’s feelings. “I can see you are very angry”, “I can see how upset you are”. • Find out the assumptions which the other person has made, to which they are reacting with their feelings. “Can you tell me what you understand about…”, “Can you tell me what has happened”. • Only when you have acknowledged their feelings and found out their assumptions can you then begin to establish the facts and bring clarity to the situation. • Once the anger has gone from the situation, you can help build rapport by matching the other person’s communication and mirroring their body language. Mirroring the other person’s body language (their seating position, posture, gestures and expressions) is a good way to show empathy, create a bond and enhance the connection. • Never take anger as a personal attack on you; it is very unlikely that it is about you. • ere may be a legitimate reason for the anger. Make sure that your resolution involves addressing the root cause, whether this be in dealing with it directly yourself, or reporting it to the relevant person.
Communication 2
Irish Hospice Foundation
Toolkit for Compassionate End-of-Life Care
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Oʙering condolences and words of comfort When a person has died, it is important that staff members acknowledge the death and offer their condolences to their relatives and friends. is may cause anxiety about what to say and how to say it, and worry about causing further upset to those who are grieving the death of a loved one. Here are some tips that might help: • It is really important to acknowledge the loss: “I am very sorry that your mother has died”. “ Please accept my sincere condolences”, “You are in my thoughts”. • Remember, even though the death may have been expected, it can still come as a shock. “Death is always a shock, even when it is expected” . • Offer support : “I am here for you” , “Is there anything I can do to help you?”, “Is there anything that you need?”, “Would you like me to call someone (priest/faith leader/family member/friend)?”. • Remind them that there is no need to rush anything or make any decisions right now. • It can help to talk about the person “It has been an honour looking after your mother”, “I am going to miss her”. • Remember that the majority of the impact of our communication comes from our non-verbal messaging. Be present. Sometimes words are not necessary; just being there for another person can be enough.
ings to avoid saying:
• “I know how you feel”. You can never know how another person feels.
• “At least…..”. (For example: “At least the suffering is over”, “At least the pain has stopped” ). Saying ‘at least’ can diminish the gravity of the death for someone. • “ ey have gone to a better place”, “He/she is happy now”, “ ey had a good innings”, “He/she was a good age”, “You have an angel in heaven”, “He is gone/passed/expired”, “ ings could be worse…” Most staff will not be delivering bad news about end of life. However, it is important for all staff to know how it can be delivered well because we can all have a supporting role to play. e animation below can offer some guidance on how to do this.
Delivering Bad News is short animation gives five steps to help you deliver bad news. It is suitable for health and social care professionals or first responders who may have to deliver bad news as part of their job.
Communication 2
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End-of-Life Care Planning and Preparation
3.
Advance care planning Advance care planning (ACP) is thinking about, talking about and telling others about one’s personal values, wishes, decisions and preferences for their future care. Advance care planning is especially eʙective through meaningful conversations. It can be beneʚcial to write, voice record, or video record any advance care plans that a person makes. It is a way of helping a person to understand their illness or medical condition and how it might impact them in the future. It is also a way to ʚnd out what matters to the person and what their wishes and preferences are. ACP discussions are an important aspect of person-centred care and are particularly important when a person has a life-limiting illness. ACP is not a once-oʙ task; it is a series of conversations that consider a wide range of end-of-life matters, from place of care, to place of death, to making funeral arrangements. Advance care planning is an ongoing process, but when decisions, preferences, wishes or values have been identiʚed, it is helpful for a person to write them down or record them. This way, if they are unable to express themselves later, their will and preference is more likely to be followed.
Preparation 3
End-of-Life Care Planning and
Irish Hospice Foundation
Toolkit for Compassionate End-of-Life Care
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Advance care planning should be started as early as a possible, ideally while a person is still very well. However, it is especially important if and when: • e person has a life-limiting, progressive illness. • e person’s treatment preferences differ from the advice of their healthcare team. • ere is a significant deterioration in the person’s condition. • A treatment decision needs to be made. • At the time of referring to Specialist Palliative Care services. • You can answer ‘no’ to the surprise question ‘ Would you be surprised if this person dies within 12 months?’
Having an advance care planning conversation Some people may not be ready or willing to have a conversation about their future care, and if this is the case, then you should respect their wishes not to. You can let them know that
“We want to understand what is important to
this is something that can be revisited another time and you will be happy to chat to them more as and when they wish. “I am very happy to talk to you about any concerns or questions you have about this now or later. Is there anything you would like to ask me about?” A nice way to introduce the concept of ACP is: “Often people with conditions like yours have a lot of questions that are sometimes scary or sometimes they are not certain if they want to know the answers. People vary in how they want to make medical decisions and plan for future care. Some people want to do this themselves, some want to share this with the doctor. What would you like?”
you so that we can care for you in a way that you want us to. Have you thought about how you would want us to care for you if you become very sick, and are unable to tell us what you would want?”
Some people also might want to have relatives and friends be a part of the discussion. Don’t make assumptions. Ask “Is there anyone you would like to include in this conversation?” Establish how much the person understands about their medical condition – “What is your understanding of where you are with your health?”
Find out what matters most to the person: • “What is important to you?”
• “What does a good day look like for you?” • “What are your goals and priorities?” • “What would you be willing to sacrifice or not sacrifice?” Find out if there is anything worrying the person: • “What are your biggest concerns at the moment?” • “What are your worries about your future?”
Asking open-ended questions will encourage a conversation to flow . Remember to use your communication skills, use an inviting tone and open body language. Encourage the person to ask questions and offer to support them with communicating the conversation with any person or people to whom they have given their consent for this purpose.
Preparation 3
End-of-Life Care Planning and
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Irish Hospice Foundation
Toolkit for Compassionate End-of-Life Care
Always end discussions with a follow-up plan. People may need time to consider decisions, or reconsider what has been discussed. Advance care planning conversations should be ongoing. Document the conversation and share the information with the healthcare team, including the GP and treating physician. If a person has an advance care plan: • Encourage them to tell their relatives and friends that they have an ACP, and that this document outlines their wishes for their future care. • Suggest that the patient/resident discusses their ACP with any other healthcare teams they may be involved with (for example, other medical teams and treating consultants). • Advise the patient/resident to keep a copy of their ACP where it can be easily accessed (for example, if they have a pre-packed hospital bag, to keep a copy in it). •
Advise them to take their ACP with them whenever they might transfer between care settings (for example, on admission to hospital, attending at the Emergency Department, transferring to nursing home). • e ink Ahead Planning Pack is a customisable set of advance care planning tools developed by IHF. ese documents allow a person to record their wishes and decisions in the event of serious illness, injury or death. It is available on www.thinkahead.ie Advance Healthcare Directives An Advance Healthcare Directive (AHD), sometimes known as a ‘living will’, is a statement about the type and extent of medical or surgical treatment a person would want or not want in the future if they lack capacity to make or express that decision at that later time. Advance Healthcare Directives are important because they allow people to express their refusal or consent to any type of treatment, including life-sustaining treatments, ahead of time, in case they are later unable to do so for themselves. Any treatments a person refuses are legally-binding. A person may also name a Designated Healthcare Representative to consent and refuse treatments on their behalf. Having an Advance Healthcare Directive means there is no decision-making burden placed on family members or healthcare professionals because a person’s healthcare decisions and preference have been made known. In the absense of an Advance Healthcare Directive, healthcare decisions will be made by the healthcare team. However, an AHD makes it easier for healthcare professionals too because they know what a person’s wishes and preferences are in different healthcare situations that might arise.
Preparation 3
End-of-Life Care Planning and
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