How to talk to people with learning disabilities about death
Avoiding the subject of death can rob people with a learning disability of a chance to grieve, but if nurses talk about it, it can help people cope and prepare
Nurses do a fantastic job of helping people with a learning disability live well. But part of living well is coping with and planning for death.
Nurses, families and others often shy away from talking about death with people who have a learning disability. This is done with the best intentions to protect people. But keeping things from people is not best in the long term.
We are all affected by death. It can help to talk about it, to celebrate people’s lives and to plan for the future.
Discussing death helps people prepare for loss
MacIntyre is the UK’s largest charity that supports people with a learning disability, and provides day centres, residential care and support activities. The charity has done research with thousands of people who use its services to find out whether people want to talk about death and dying – and how to help them do it.
It can be frightening for a person with a learning disability if someone they love ‘disappears’ without them knowing why or being able to say goodbye. And while people with a learning disability are living longer than ever before they still die earlier than the general population, so they need to be prepared.
Feeling comfortable talking to people about death helps us all to live better and plan for the end. People with a learning disability want to be offered the chance to talk about difficult topics in a sensitive and supportive way but there is no ‘one size fits all’ approach. People have different levels of capacity, background knowledge and cultural, religious and spiritual beliefs.
Tips on the use of language when talking about death
After discussions with thousands of people, we know that the language we use is important. We suggest that learning disability nurses use these tips when starting conversations about death with people with a learning disability and their families:
- Use simple words to say what you mean, alongside pictures or easy-read booklets.
- Use the word ‘death’ rather than vague terms like ‘passing away’ or ‘going to another place’.
- Explain that death is something normal that happens to every living thing. It is when we stop breathing, talking, moving and feeling.
- Check what people think words mean. If someone says ‘dad has gone to heaven’ or ‘a better place’ check what this means to them, so they are not left waiting for people to come back.
- Say that it is okay to feel sad, scared, angry or sick when thinking or talking about death, or when someone we know dies. And let people cry – it is a natural response to emotional situations.
- Use the ARCH approach:
– Ask what the person already knows and what they want to know using straightforward questions;
– Repeat and clarify information;
– Check that people understand and be guided by how they like to learn and communicate;
– Help the person to describe their feelings by listening to them and reminding them that whatever they say and feel is ok. - Do not rush to fill in silences. Give people space to think.
A music playlist helped Paul to celebrate his mother’s life
Jo is an NHS nurse. She supports a man named Paul, whose mother died when he was a teenager. Jo tried to speak to Paul about what happened, but he always changed the subject or left the room.
One day Jo and Paul started chatting about Jo’s favourite songs. She said that a song reminded her of her father because it was played at his funeral and then she went on to tell Paul what a funeral is.
The next time she saw Paul, he talked about his favourite songs. And then another day they discussed songs he might like at his own funeral.
Over time he started talking about his mother ‘disappearing’, and how no one told him what had happened or gave him a chance to say goodbye. He had lived in fear of other people disappearing from his life and thought it was his fault.
Jo helped Paul put together a playlist of songs that his mother might like as a way of celebrating her life and saying goodbye. Since then, Paul has been happier and lets more friends into his life.
Finding the time to talk about death
Talking about death can be part of routine care, not just when someone is unwell. Nurses might find many opportunities to discuss death and dying:
- Use any opportunities that arise – when you see something relevant on TV or hear about someone who is seriously ill.
- Raise the topic every now and then, not as a one-off, so it is a normal part of conversation. Remember that it does not have to be a long ‘heavy’ discussion.
- Use fun activities to get people talking. This could include, singing or listening to music, writing a bucket list, drawing pictures or looking at photos of people and taking about people who have died.
- Use conversation cards to prompt people to talk about what is important to them, so it becomes like a game. Examples include ‘What do you want to happen to your things when you die?’ and ‘Who would you want to sit with you if you were very unwell?’
- Use your own experiences, such as attending a funeral or writing a will, to start conversations. This reminds people that dying affects us all.
- Involve people’s families and allow them to talk about their hopes and the support they want in place for their loved one after family members die.
Death is a tricky subject. But if we do not raise it, we rob people of the chance to live their best lives, taking part in normal human experiences and planning what they want for the future.
Further information
- Foundation for People with Learning Disabilities: Dying
- MacIntyre: Death and Dying
- Mencap: Dealing with a Bereavement
