Social care settings provide end of life care and bereavement support in often difficult environments. Their work is now significantly complicated by the restrictions and challenges Covid-19 presents. Here are resources offering support and practical advice on aspects of providing end of life care and in offering bereavement support. They have been chosen by Social Care Wales with the help of people from across the UK*.
Offering comfort to someone who is dying without their relatives or closest friends
We will all react differently when we approach the end of our lives. So it is for the people you care for. Some will understand what is happening, some won’t, some will be scared, others will find a sense of peace. Talk to the person you are caring for or the people who know them well, to find out what matters most to them. You can use this information to provide comfort in a person’s final moments, acknowledging the life they have had and the person that they are. What you’re doing is one of the most important things you can do for another human being.
What helps them feel connected to the people that they love?
- Are there photos, music, familiar perfume, an object or memento they can hold to remind the per-son of their loved ones?
- Can they communicate with friends or family by phone or video links?
- Is there a way to record memories or send messages to loved ones, perhaps an audio recording or a letter you can read out?
- Think about ways to ensure the person’s loved ones know what you are doing to help the person who is dying to remain connected to them. This will offer comfort and a sense of connection.
What makes them feel safe and cared for?
- Are they physically comfortable? Are they clean? Is their hair brushed? Is their dignity being protected? If you feel they are in pain or discomfort, contact their GP or named healthcare professional
- Can you play familiar music or provide favourite foods or treats?
- Are there ways to ensure physical comfort by holding a hand, providing a favourite blanket, cushion or item of clothing?
- Are there any religious or spiritual things that bring the person comfort e.g. a favourite reading or prayer, a hymn or a video call from their faith/spiritual leader
- How can you keep the environment calm by avoiding loud noise and bright light, making sure all carers feel confident to give support even if they are in an unfamiliar situation?
- Are there things they normally enjoy doing such as music, TV or gardening – how can you creatively support these activities in the current situation? Can you bring in flowers from the garden into their room? Sit and listen to their favourite music with them? Read from a favourite book?
What helps them and their loved ones to understand the things that are happening and the choices they may have to make?
- Think about what the person knows or understands already
- Be with the person from where they are. Perhaps they know what they want, so honour their decision making, or perhaps they are confused or have memory difficulties. They may still be fearful even if they cannot express their fears or wishes. Be with them and offer comfort using some of the ideas suggested.
- Think about reflecting the words and language that they use to talk about their health, this means using the same sort of words they use
- Think about using clear and unambiguous words to avoid confusion even if those words do not feel comfortable, for example, dying
- Think about allowing silence and tears if they have just heard bad news or if they sense their life is ending – sometimes just being there with them is all that is needed
- Think about who you can ask if they have questions that you don’t feel able to answer. As a team, create a list of healthcare professionals involved in their care that can be contacted if you need advice.
A communication chart has been specifically designed to support communication during the Covid-19 pandemic is available free to download in several languages.
Offering compassionate care and effective communication when wearing PPE
One of the biggest challenges in supporting people who are dying with Covid-19 is having to wear Personal Protective Equipment (PPE).
Many people will find it harder to hear or understand you when your mouth is hidden from them when you are wearing masks and visors. Here are some ideas to help you ensure clear communication and that you are able to deliver care compassionately when wearing PPE.
- Ask if there is anything you can do to make it easier for the person to hear you
- Check whether they have a hearing aid (and whether it works)
- Do they find it easier hearing from one ear?
- Make sure background noise is as low as possible
- Speak clearly and slowly – increasing volume on its own may not help
- Look after your voice – avoid shouting and give your voice a rest sometimes, drink plenty of water
- Use short sentences and check their understanding
- If you need to, use a notepad, tablet, whiteboard or flashcards to help.
We show we care for someone and help them to trust us with our facial expression, tone of voice and gestures as well as the words we use. This can be more limited with PPE, and some people may become more anxious.
- Sit at the level of the person whenever possible
- Use your eyes to connect and express your smile and concern
- Think about the tone of voice you use – try to reassure and remain calm
- Consider bringing a photo of yourself without a mask to help them to know the ‘real’ you and/or attaching it to your uniform. Ensure your picture and name is big enough and placed somewhere that it is easy for the person to see
- Use hand gestures to underline the things you are saying.
What can I say?
- Be yourself – talk about everyday things, don’t let the mask make you forget the great communication skills you already have!
- Acknowledge that the mask makes talking a bit awkward, and that you understand how it might make them feel. Ask them how it is for them.
- Think about the reactions or emotions you might show in your face and try to put them into words “I’m pleased you said that”, “I’m sad that this has happened to you”
- Show you are listening to them. Be patient, summarise what you are hearing and check you have understood them
- Don’t be afraid to be silent with them, don’t rush away when you have finished speaking – sometimes being present with someone can communicate more care than anything else.
Talking to children about PPE
PPE can look scary for children and if they see staff wearing protective equipment to take care of them or a loved one, this may make them fearful or anxious. They may even question what they see on the television. Here is a little advice on how to explain:
“When we work with something that could hurt us or is dangerous people need to wear items to protect them so they can fight it. Firemen wear visors to protect their faces from fire, policemen wear body braces to protect their bodies, dentists use goggles to stop the spray in their eyes, superheroes wear capes to shield them! Nurses and doctors need to stay safe from the coronavirus so they can fight it, so sometimes need to wear masks, goggles and aprons, this is their superhero cape!”
Having difficult discussions with someone who is seriously unwell or dying
You may well be the carer that someone chooses as their safe person to ask difficult questions. This can be a difficult position to be in. Sometimes you will feel that someone else should be answering the questions, but they have chosen you for a reason. That is usually because they trust you or have established a relationship with you and this makes you the ‘best person’ to have this conversation even if you don’t want to be.
There may be times when, because of personal circumstances for instance, you know that you are not in the right ‘emotional space’ to support a difficult conversation and it is important to acknowledge this:
“I am really touched that you trust me to ask this difficult question, I know this must be difficult. I really don’t think I am the right person right now to have this conversation but I can see it is important to you – is there someone else you feel happy to talk to?”
Examples of difficult questions could be ‘am I going to die?’ ‘will I get better?’ ‘will someone be with me?’ or ‘can I go to hospital for treatment?’. Please do not ignore these important conversations. They can feel overwhelming but think about what you would want if it was you asking the question. Do not brush these questions away with comments like ‘you don’t need to be worrying about that’ or making false reassurances ‘of course you will get better’. People are looking for reassurance and compassion and we can give this without making any false promises or giving answers to questions that are not within our scope of practice.
Try and buy yourself even a few moments of time to compose yourself – maybe just count to 3 or say something like ‘that sounds like a really important question, let me just grab a chair so we can sit down and talk about it’. Even the act of pulling up a chair can give you a few seconds to breathe deeply and think about how you are going to answer a difficult question.
Often answering a difficult question with another question will help discover what it is that is causing the anxiety, for example, ‘am I going to die?’ could be answered with ‘that is a big question, what has made you ask that?”.
Difficult questions like this are often not about wanting the answer, they are often about just wanting to talk about anxieties so listen more than talk and allow some silences to let the person know that this is difficult. If it is possible and allowed, use some physical contact by holding a hand or resting a hand on their arm. Most importantly maintain good eye contact – this is particularly important if wearing a mask.
If people need specific information or reassurance, for example, about medication or symptom relief, feel confident about saying that you can’t answer that question but you will find someone who can. Make sure you follow this up.
Offering comfort and delivering bad news to relatives who cannot be with their loved ones
Families and friends will be distressed that they were not able to be with their relatives when they were unwell or when they died or were not able to be with them in the way that they would have liked. Take time with these conversations and think about what would help you if you were in their position.
- Always allow yourself some preparation time. You need to be in the best ‘emotional space’ possible. You may only have a very short time to do this but it can still be done well. Think about what you would want in the situation and how you can best show care and compassion.
- Make sure you have a quiet space in which to make the call. Try to make sure you will not be disturbed by other phones ringing or people coming in and out of the room
- Make sure that you know the names of the relevant people – the person you are talking about, the person you are phoning and perhaps any other important family member. This will help you to make the call personal.
- If you are able to speak to family members face to face, consider how to make the environment feel comfortable and safe. Find a space where you won’t be disturbed and where you can both sit comfortably. Make sure you will have all the time the family member may need. If the space is outside or near a shared area, consider confidentiality. Check the family member is happy to talk in the environment you have identified. Have things the family member may need, for example, have tissues available and easily within their reach. Abide by any current restrictions such as social distancing, check the Care Inspectorate Wales website for current guidance.
- Have the relevant information handy – think about the questions people are likely to ask and get the responses or signposting information ready. These questions might include what is going to happen now to their loved one, where will they be taken, who organises a funeral director, how they can access bereavement support, and who they can contact if they have questions.
- Think about how you are going to start the conversation – it is a delicate balance between a little bit of introduction and getting to the point. People will know you have a reason for the call/visit.
- We tend to talk faster when we’re anxious so make an effort to slow down and allow time for what you are saying to be heard. Counting to 3 in your head in between sentences can help slow things down.
“Hello, my name is xxxx. I am one of the team who looks after xxxx. I need to talk to you about xxxx. Can I just check that you are okay to talk for a few minutes? Do you need to find somewhere quiet?”
During the conversation
- We tend to talk faster when we’re anxious so make an effort to slow down and allow time for what you are saying to be heard. Counting to 3 in your head in between sentences can help slow things down.
- Use direct language but in a sensitive way. Don’t use vague descriptions about ‘losing someone’ or saying ‘they are in a better place’ or ‘they are not very well’– these phrases are easily misinterpreted.
- Don’t try and avoid the key piece of information by doing lots of leading up to the final statement. Start with what you need to tell them but do it kindly and softly:
- Feel confident about allowing some silence:
“I am really sorry to have to tell you this but sadly xxxx died this morning/ afternoon/ evening, I want you to know that it was very peaceful and I/xxxx was/were with them.”
“I am really sorry to have to tell you this but sadly xxxx has become very unwell and we are very concerned about them. They are very poorly at the moment and we are not sure if they can recover”
“I understand this is very difficult to hear, please take a few moments ……”
Words you can say
Acknowledge that this is a very difficult situation and that you can understand that it is causing distress:
“I can’t imagine how hard this is for you, I know if circumstances were different you would want to come and say goodbye and I am so sorry that is not possible”
“I can’t imagine how hard this is for you. We know circumstances with Covid make this even harder and I’m so sorry this is the case”
“Is there anything you would like to do/ say to xxxx before they leave us?”
Or if that is not possible
“Is there anything you would like me to do/ say to xxxx before they leave us?”
Acknowledge that people may feel angry as well as upset:
“I understand that this is really difficult and you are feeling angry about the situation, is there anything I can do/ tell you to help you feel closer to xxxx”
Ask if they have any questions and be prepared to answer questions about what the last few hours/ minutes of their loved one’s life was like and who was with them. Answer their questions as truthfully but as kindly as you can:
“We did everything we could to make sure they were not in pain/ not scared and someone was with them, we know in an ideal situation they would have had family with them but please be assured we made sure they knew they were loved and valued”
“We are doing everything we can to make them comfortable and making sure they have the right sort of care; I know it is difficult hearing this and knowing you can’t come to see them but is there anything you would like us to tell them”
If they are able to see their relative they may be frustrated by restrictions. Allow them to voice their frustration and listen intently. Resist the urge to interrupt, placate them or give reasons. Acknowledge their frustration:
“I can’t imagine how difficult this is for you and your family. I’m so sorry”.
Consider if there is a compromise that you can safely offer.
Don’t be tempted to give lots of detail that they haven’t asked for. There will be time for that when people are ready to ask. Answer the questions that are asked and give time for people to take in what they have been told but do not feel you have to fill in the gaps.
Once you have answered any questions check that you have told them everything they need to know. This might include what will happen next, anything they need to know about registering the death or contacting the funeral director.
Check in with the person that they have understood the news and any information you have given:
“I appreciate this has been very difficult news to hear, it is a lot to try and take in but do you have any questions, is there anything you would like me to go over?”
If you have had to speak over the phone you could check to see if they would like any information sending by text or email so they have it in writing (check that you are able to do this before offering it).
Ideas you can offer
- Work within your organisational policies and national Covid-19 guidance but think creatively about things you can offer to provide comfort
- Can you provide them with details about a song that you played to their loved one or things that were said?
- Can you provide them details of an item of sentimental value you placed close to them, such a photo, a scarf, or something of personal importance. Can you safely allow the family member to collect this item?
- Can you provide tokens such as comfort pebbles or are there local volunteers providing crocheted hearts?
- The Bereavement Alliance provides further advice and suggestions on how loved ones can find ways to feel connected during Covid-19 restrictions.
After the conversation
Look after yourself. These situations are emotionally difficult and exhausting. Take a short break, get a cup of tea or talk to a colleague or friend before you go back to normal duties. Let your colleagues know that you have had this difficult conversation so they can support you too.
Caring for young adults at the end of life
Supporting Making Choices
Young adults, broadly those aged 18-40 years, may have differing needs, specific to their individual circumstances. Cater the care you provide to their age, understanding and preferences and most importantly, as with all care, treat them as an individual, taking into account what matters to them.
Legally, any adult who has mental capacity, has the right to be supported to make their own choices about their care. If someone has been assessed as not having capacity this does not mean that they can’t be involved in decision making. Consider their abilities and how best to involve them. Find out what matters to them. Decisions around things that matter to them and that bring comfort are just as important. If someone is nonverbal look at their physical cues to try and establish their wishes. Ask those who know them well to help you with this, including close friends and family members. Equally, it is their right not to make decisions if they choose not to. A GP or named healthcare professional must be involved in these discussions if it relates to their clinical care.
Make sure that the person has all the information they need to weigh up a decision, and that it is presented in a way that they can understand. Here are some resources from the Social Care Institute for Excellence and Marie Curie that can help you with this.
They may find it helpful to consider the information and their preferences with a close friend or family member. Find out who they would like to support them if they have decisions to make. Consider using video calls or other means to help make this possible.
Remember that making choices is much more than clinical care. The person may want to let you know choices and decisions about their personal affairs or they may want to leave messages for people to have after they have died. Here is a template that can help support someone to think about what they would like to say.
If someone uses communication aides or assistive technology, ensure that the staff member supporting them is confident and very able in supporting their use.
For some young adults, access to their online social network will be very important, consider ways in which you can help continue to make this accessible to them.
Being in a stressful situation or feeling strong emotions can have a particular impact on young adults when they have choices to make. Give time to consider decisions when the person is not feeling under pressure or distressed.
For people who are not able to communicate their own needs when they are unwell or in distress
- Make sure that all carers know how this particular person may express distress. For example: changes in facial expression, making different noises, paleness, sweating, or unusual movements or stiffness
- Make sure that all carers knows ways and means of providing comfort to this particular person
- Here is a communication chart specifically designed to support communication during the Covid-19 pandemic and is available in multiple languages.
- Identify the things that sometimes cause them distress. Check for constipation, difficulty breathing or coughing, pain, anxiety, discomfort with feeds, unwelcome sensory stimulation
- Look for practical things that may relieve different symptoms: This might include changing their position to relieve pain or breathlessness, giving medication, making sure they have calm reassuring surroundings, or distracting with a familiar activity. If you have any concerns consult with their clinical team.
- Know where to find help if you are concerned about the person’s distress – have a list of people to call for advice. This should include the person’s doctor, but might also be a family member or carer who understands their needs well
Care for friends and family
Many young adults have a wide network of friends and family including online friendship groups and peers who share a similar health or care situation. All of these people may be sources of support for the person in your care, but they may also need support themselves.
- If possible make a plan with the person in your care about who they want to be contacted in different situations and how much information they want shared.
- Be careful to respect everyone’s confidentiality while looking out for people who may be struggling. If you are concerned about anyone, suggest to them that they contact their doctor, local palliative care or bereavement team
- Don’t assume all friends and family will understand or respect each other’s importance in the person’s life
If possible, it is important to give people a chance to prepare for dying in their own way. This can also give the people left behind reassurance and memories. They may like to consider:
- how they want to say goodbye to their loved ones
- affairs that they need to leave in order (including writing wills, planning for social media profiles after death, buying presents)
- final goals they want to achieve
- ways they want to help people remember them (art, recorded messages, music, funeral planning). Consider their abilities in helping them to achieve this. If they have additional learning or physical needs, think creatively about how you can support them.
Supporting bereaved children and young people
As a social care professional during the Covid-19 crisis you may find yourself supporting bereaved children and young people or offering advice to families who are recently bereaved and have to explain to their children what has happened. The resource below offers practical suggestions and information to help you.
As an adult it is often difficult for us to talk about death, the topic is still somewhat a taboo and our own anxieties can make this feel very uncomfortable. Talking to children about death can make us feel protective, wanting to protect them from the knowledge of death. However, this can in fact make the children more anxious about the unknown. Children are very attuned to adult’s emotions and often the unknown is scarier for a child than the truth. The truth can be managed and it is very important for children to understand that death is a part of life and that any emotions they are experiencing are ok.
Talking to children – top tips
- Don’t be afraid of ‘saying the wrong thing’ or ‘making things worse’ – this has already happened. Your conversation will only support the child and young person.
- Be yourself, use your own language.
- Be aware of your own cultures/beliefs about death.
- Don’t assume the child knows the person is dying or has died.
- Try and speak with children/young people as soon as you can. If they are aware someone has the coronavirus they may be waiting for news.
- Think about your environment, find a quiet space where they can have your full attention.
- Think about whether you will speak to all siblings at the same time, or older children first. This will depend of the ages of the children and the family circumstances.
- Be honest – children know when we are hiding things and this can make them feel like they cannot trust us.
- Always refer to the person who has died by their name.
- Be sensitive and listen to the child.
- Share your own experiences.
- Ask about their memories and experiences of the person who has died. What kind of person they were? What are their favourite memories? Allow them to talk about them.
- Never use euphemisms such as ‘gone away’, ‘gone to sleep’, or ‘up in the sky’. These are lovely sentiments but can confuse a child and does not give them the permanence of the situation. Use the correct terminology such as ‘died’, ‘death’ or ‘dying’.
- Don’t shut down a child as this may make them feel they should not ask questions
- Allow children to ask questions and give them answers as honestly as you can. Questions that children frequently ask include: Why did they die? How did they die? Why do people die? Will I die? Will mummy die too? What happens when you die?
Here are some useful responses to help explain death to children:
“Death is a part of life and all things die, but this only happens when someone is so ill and the doctors cannot make them better.”
“Our body doesn’t work anymore”
“People who are well don’t just die, and there is no reason to think they will.”
“What do you think happens when you die?”
Some families may have religious beliefs about what happens when someone dies, but invite the child to have their own perception.
- Don’t be afraid to talk about what happens next such as funeral directors and burial/cremation. Explain that they can say their own goodbyes. Given the current restrictions with funerals ask how they may like it to look and encourage their involvement in creating a meaningful way to say goodbye.
- Don’t assume the child will be sad about the death. Depending on their age, children will often accept the fact and continue with their daily activities. Children live for the here and now. The table below gives some idea of how their understanding might vary by age.
- Let the child grieve in a way that they wish to. Every person grieves differently, and any emotion is allowed.
- Name the emotion you are seeing in the child to help them understand their feelings.
- Ask if the child would like to do some memory activities, but accept that at this time they may not want to. This can be revisited when they are ready.
- Ask if there is anyone in particular they would like to speak to for support, they may have someone they trust and feel supported by.
Memory making ideas
- Make a memory box – this can be made with a shoe box, or any box within the home. The child can put items in the box that remind them of the person who died, for example, photos, stories or pictures. The child can decorate the box to give them a sense of ownership.
- Light a special candle in memory.
- The child may want to give the person an item of theirs (teddy bear) to be with them.
- Create a worry jar, a memory jar, or memory bracelets.
Understanding death: age and stage
Explaining coronavirus to children
These resources are designed to help explain coronavirus to children:
These websites provide further advice on offering bereavement support:
Offering spiritual care
Marie Curie describes spiritual care as ‘Spirituality means different things to different people. Religion and faith might be part of someone’s spirituality, but spirituality isn’t always religious. Everyone has spiritual needs throughout their lives whether they follow a religion or not.’ Spiritual needs can include:
- the need for meaning and purpose in our lives
- the need to love and feel loved
- the need to feel a sense of belonging
- the need to feel hope, peace and gratitude.’
This guide provides an overview of spiritual practices for a variety for faiths and beliefs. It will explain what customs are of spiritual importance.
The City Parish of St John the Baptist, Cardiff have produced these prayers for accompanying the dying which you can use with people who are dying and who have a Christian faith.
The Muslim Council for Britain have provided guidance on end of life and post-death care for Muslims during covid-19.
The UK Sikh Council have established a support line to offer advice during Covid-19 and can provide faith-specific advice for those of the Sikh faith.
Recognising when your team is grieving and leading and responding with compassion
Many in social care in Wales are being asked to provide compassionate end of life care in social care settings. This is hugely emotionally challenging for many staff. Teams and their leaders can help.
Team leaders modelling compassionate leadership:
- Attending: paying attention to team members – ‘listening with fascination’
- Understanding: shared understanding of what their team members face
- Empathising: feeling with them the pain, fear, anxiety, frustration, anger, grief
- Helping: taking intelligent action to serve or help team members to provide the high-quality compassionate care they wish to provide and nurturing their own wellbeing.
What else can team leaders do?
- Ensure there is a clear statement of the higher purpose of the team’s work that all understand and is repeatedly reaffirmed – such as enabling patients, service users, clients to live and die feeling safe surrounded by love and care
- Encourage team members to model compassionate support for each other during these challenging times – listening, understanding, empathising and helping. They can help by showing kindness and compassion and checking in with each other.
- Minimise hierarchy and boundaries within the team and when possible encourage eating together, having coffee together etc.
- Encourage team members to recognise that though we tend to focus on technical training – the focus should be at least as much (if not more) on how we work as supportive, compassionate team members
- Encourage team members to help each other by acknowledging and validating each other’s feelings.
- Ensure the team has regular time to reflect, share, and to plan and review together. In these critical times this should be daily such as at the start and end of shifts, and with some scheduled longer reviews whenever possible.
- Trust is key – faith in each other’s inherent goodness and faith in the abilities/skills of others.
Particularly at this time, leaders must convey their:
- Openness and honesty
- And of course, compassion.
Here are some links that offer further support and thoughts on compassionate leadership during the Covid-19 pandemic:
Memory making and remembering as a team
All lives are precious, and you may wish to do some memory making with or for families depending on the circumstances. You may also wish to take time as a team to mark the loss and pay your respects.
Some simple ideas are:
- Make a memory box and place items of importance to the individual in there. This can be a priceless gift to the family.
- Make a memory book. Inside place photos and ask staff members to write their favourite members of the person who has died. Families will treasure these memories and appreciate that the person who has died was valued by others.
- Arrange a team reflection. This can be just 15 minutes. Arrange a time and place. Gather to light a candle in memory of those who have died. Play a favourite song or share some happy memories of the individual.
- Create a team memory tree or wall where you can display the names of those who have died and staff members can add messages. This can be renewed monthly and messages from previous months placed in a large photo album, safely in a box for annual memorials or given to the family.
Advice on post-death care and funeral arrangements
Due to Covid-19, the advice regarding post death care is regularly being updated. See the latest guidance on care of the deceased with suspected or confirmed coronavirus.
The National Association of Funeral Directors are regularly updating their information regarding what funeral arrangements are currently possible.
The following links provide ideas on some alternative ways loved ones can say a meaningful goodbye if attending a funeral isn’t possible:
Social work and end of life care
The British Association of Social Workers and the Association of Palliative Care Social Workers have developed resources to support social workers during the Covid-19 pandemic.
The following links give advice about aspects of practice, use of PPE and supporting end of life care.
Welsh Government resources
The Welsh Government has worked with partners to develop this resource on ‘Palliative Care Resources and Information during Covid -19’. The resource provides information on a variety of needs including how to access specialist palliative care support.
Expressing end of life wishes, advance care planning and advance care plans
We can think about what we would like to happen if we became critically unwell and died. As a social care professional, you may encounter times when those you provide care for want to discuss with you their wishes if they need end of life care. These discussions are often called 'advance care planning'.
This means discussions where the individual concerned can discuss their preferences regarding the care they receive, who or what is important to them and decisions about their personal affairs. Here is a video that explains more about advance care planning.
An advance care plan is a written record of those wishes. Here is a short video explaining the difference between advance care planning and an advance care plan
There are different ways to record a person’s wishes, some are legally binding and require the signature of the senior clinician, some are not legally binding but are a way of making wishes known to family members and professionals. See examples of templates and explanations of the different ways of recording advance care plans.
Supporting advance care planning conversations
Conversations about end of life wishes can be uncomfortable and even distressing. It is important to respect the individual’s right to express their wishes to you and to not shut the conversation down.
Marie Curie, a charity supporting people through terminal illness, has produced resources to help support you. The resources provide advice on how to have the conversation in a sensitive, empathic and ethical manner.
The Northern Ireland Social Care Council has produced this 10 minute film to guide you through difficult conversations about end of life wishes. It poses some of the questions the person you care for may want to think about.
The following prompts, developed by Hospice of the Valleys, will help support discussions around end of life wishes:
- Advance planning discussions can help prevent unnecessary and unwanted hospital admissions, by understanding what matters to the person
- They may want to discuss what treatment or care they do not want, there is more information below on making an Advance Decision to Refuse Treatment.
- They may want to discuss appointing a Lasting Power of Attorney and deciding who will make decisions if they lose the capacity to do so. (There is information in the section below for those who are assessed as not having capacity.)
- It can be an opportunity for a person to manage affairs and consider making a will, or telling someone where their will is
- It can include discussing the person’s preferred place of care and/or preferred place of death
- It might involve providing emotional support to the person to enable them to discuss their wishes with their family or a close friend. In current circumstances you may need to support the use of video calling to help facilitate this.
- You may need to provide emotional support to family members who find discussing their loved one’s wishes difficult
- Discussions might include financial planning, for example, releasing life or critical illness insurance, accessing bank accounts, listing policies/pensions, making benefit applications, all of which enable the person with the illness to die knowing their family are supported
- The person may wish to discuss who will look after their pets after they die
- They might want the opportunity to give possessions to loved ones, or plan accordingly for these items to be passed on
- A person may want to plan their funeral. They can do this by sharing their ideas and wishes or by working directly with a funeral director to plan and pre-pay for their funeral. There are current restrictions around what is possible and for more information see advice on post-death care and funeral arrangements
- They may want to make decisions about their digital legacy
- They may discuss with you their spiritual/religious beliefs and how they want these served in the event of their deterioration or death
- They may have ideas for things they want to do and how to spend remaining time. Current circumstances are restrictive but even small gestures and experiences can be meaningful. They may want to watch their favourite film, eat a favourite treat, look at photographs or share memories. More information on Offering comfort and delivering bad news to relatives who cannot be with their loved ones
- They may want reassurance that their family will be supported through their bereavement
- They may want to discuss and explore with you what life has meant, what hope means, or what values are important
- They may want to share treasured memories
- The person may want to plan lasting messages to those they love.
It is important to make sure that the person has all the information they need to make informed decisions, and that it is presented in a way that they can understand. Here are some resources from the Social Care Institute for Excellence (SCIE) and Marie Curie that can help you.
Compassion in Dying has produced resources to support advance planning discussions during Covid-19. You can also find a template for an advance statement. This is not a legally binding document but provides a template on which someone can record their preferences and wishes.
Dying Matters Wales or Live Now/Byw Nawr hosta YouTube channel with a variety of short films explaining different aspects of advance care planning that you may find helpful.
Supporting end of life wishes for those without capacity
Legally, any adult who has mental capacity, has the right to make choices about their life and the care they receive. Social Care Wales has up-to-date information on the Mental Capacity Act.
If someone has been assessed as not having mental capacity, find out whether they have a named Lasting Power of Attorney or Guardianship Order. You can find out about different types of Lasting Power of Attorney and their legal powers.
If someone has been assessed as not having capacity this does not mean that they can’t be involved in decision making. Consider their abilities and how best to involve them. Find out what matters to them. Decisions around things that matter to them and that bring comfort are just as important. If someone is nonverbal look at their physical cues to try and establish their wishes. Ask those who know them well to help you with this, including close friends and family members.
The PCPLD network have developed easy read resources to support advance care planning with people who have learning difficulties.
The use of PPE, while essential, is uncomfortable and can create barriers in communication. This could create a barrier to supporting discussions around end of life wishes. Here is support and information on how to enhance communication when wearing PPE.
It is now common for people of all ages to have access to the internet and/or for information about them to be available on the internet. This online information is known as the persons ‘digital legacy’. Below is the Digital Legacy Association’s definition:
'A digital legacy is the digital information that is available about someone following their death. Someone’s digital legacy is often shaped by interactions the person made and information that they created before they died. This might include their social media profiles, online conversations, photos, videos, gaming profiles and their website or blog.
Someone’s digital legacy can also be informed by content that is created or co-created by others. This may include interactions that have occurred on someone else’s social media wall or stream. Someone’s digital legacy might also informed by what others have posted online about the person in a newspaper, blog or external website.'
End of life wishes can explore what the options are for how they would like their digital legacy to be managed. Here are resources to support peoples decision making about their digital legacy.
Advance Decisions to Refuse Treatments (ADRT)
Some individuals have very clear wishes regarding treatment they do not want to receive if they become critically unwell. These decisions can be recorded in a legally binding document called an ‘Advance Decision to Refuse Treatment’. See further information and copies of these templates. These documents require the signature of their GP or named Doctor.
There can be myths about what CPR involves and its effectiveness. TalkCPR have accessible resources that explain the process and how decisions are made about its use.
There are no blanket policies regarding the use of CPR and life sustaining treatment for individuals who are vulnerable. Decisions should be made on an individual basis, in their best interests and wherever possible, in partnership with the person who is unwell. The Welsh Government Chief Medical Officer, Dr Frank Atherton, and Chief Nursing Officer, Professor Jean White recently made the following statement:
“Age, disability or long-term condition alone should never be a sole reason for issuing a DNACPR order against an individual’s wishes. It remains essential that decisions are made on an individual and consultative basis with people. It is unacceptable for advance care plans, with or without DNACPR form completion to be applied to groups of people of any description. These decisions must continue to be made on an individual basis according to need and individual wishes.”
Care Inspectorate Wales (CIW) and Health Inspectorate Wales also issued a joint statement on advance care planning in Wales.
End of life care for those with dementia
Social Care Wales have curated resources on providing care for those with dementia during Covid-19. There is also a specific resource on supporting someone with dementia to express their wishes.
The Social Care Institute for Excellence has produced resources onproviding end of life care for those with Dementia. These are not Covid-19 specific resources but they contain lots of useful information that is still relevant.
Hospice for the Valleys offer a ‘Cariad’ service for people living with Dementia. The below offers prompts to consider when delivering end of life care to those with dementia:
The CARIAD model for Palliative and EOL dementia Care
C – Connect, the importance of feeling connected to someone cannot be underestimated. More than anything families and those living with dementia need time with professionals to explore feelings and concerns. Peer support for the carer is also important, having the confidence to specifically address anticipatory and ambiguous grief and the concept of losing a person to dementia can have a positive impact on reducing feelings of grief and loss and can even prevent complicated grief and bereavement issues.
A – Ask, family members and friends hold key information about someone’s past and this can provide vital information in enabling professionals to connect with the person and understand the world through their lens.
R – Reminisce, the power of the mind and its ability to transport people to other times in the life should be utilised with people living with a dementia diagnosis. If used correctly and linked with information provided by family members this can be an excellent way to calm and distract people when they are feeling upset or agitated.
I – initiate conversations, advance care planning can be important for somebody with a dementia diagnosis. Initiating conversations around preferred place of care, future support needs and concerns allows families time to consider what they would like their future to look like. Lasting power of attorney paperwork should be explained and completed where possible. This reduces feelings of guilt and anxiety when the person with dementia deteriorates and their care needs change as this can be dealt with from the viewpoint of the person rather than family members and professionals having to make best interest decisions.
A – Appreciate the world experienced by the person living with dementia. How a person experiences the world changes over time due to a dementia diagnosis. Senses like taste and touch can change so someone may not like the same things or be more sensitive to touch. Vision is also affected and should be considered when approaching a person to ensure you don’t shock or scare the person.
D – Demonstrate compassion when working with people with a dementia diagnosis and their family members.
Self-care and bereavement support
In these difficult and challenging times it is important to take time to acknowledge your own needs and provide self-care so to prevent burn out. This is amplified when caring for those at the end of their lives. In your self care and in protecting your resilience recognise that you are human and that any loss of life is incredibly sad.
For those leading teams this means an additional responsibility for regularly assessing, acknowledging and identifying the emotional needs of your team. You can find out more about this in our resource on compassionate leadership during Covid-19.
Here you can find a blog about self-care during Covid-19. It provides practical thoughts and ideas for ways in which you can look after your emotional and physical health.
If you are feeling a sense of loss and bereavement and need additional support, you can find help and advice on the websites and helplines below.
Also check to see if your employer offers an employer assistance programme as you may be able to access free telephone support and/or counselling.
- Bereavement Advice Centre - 0800 634 94 94
- Bereavement Support Network - 08080 168 9607
- The Good Grief Trust
- Age Cymru - Bereavement - support after death - 0800 022 3444
- Child Bereavement UK - 0800 02 888 40
- 2 wish upon a star - Unexpected death of a child/young person aged under 25 years. Phone support provided/phone counselling and memory boxes supplied - 01443 853125.
We appreciate some of these terms are very similar and can be confusing. Here is a jargon buster which clearly defines each of the terms we have used in this resource.
- Dr Megumi Baba, Consultant in Transitional and Paediatric Palliative Medicine, Ty Hafan Hospice and Cardiff and Vale Health Board
- Anna Bowyer, Play Therapist, Ty Hafan Hospice
- Dr Jo Elverson, Consultant in Palliative Medicine, St Oswald's hospice
- Sarah Harries, Palliative Care Social Worker, Hospice of the Valleys
- Tracy Jones, Social Worker and Head of Community Services and Partnerships, Ty Hafan Hospice
- Dr Julie Latchem-Hastings, HCRW Postdoctoral Fellow, Centre for Trials Research, College of Biomedical & Life Sciences, Cardiff University
- Jonathan Pearce, Social Worker and Family Support Lead, Hospice of the Valleys
- Lynne Phelps, Play Therapist, Ty Hafan Hospice
- Professor Michael West, Senior Visiting Fellow, The King’s Fund, Professor of Organizational Psychology, Lancaster University.