A difficult conversation
When asked, many of us say we are comfortable talking about death with our family and friends (around two thirds of us, according to research commissioned by the National Council for Palliative Care in 2016). However, far fewer of us seem to actually get around to it. According to the same research, less than a third of people had talked to someone about their funeral wishes and just 7% had written down their preferences for future care.
Why is there such a discrepancy? Knowing how to start the conversation about end of life care can be one of the obstacles to letting your feelings be known. Read on for some useful pointers on how to start that conversation and who you can talk to get help with planning end of life care.
Why it’s important to talk about end of life care
Whether you’re thinking about the final stages of your own life, or someone close to you is very ill or dying, it can be difficult to talk about the situation. But speaking openly with your loved ones or with someone else you trust can help everyone involved. You may find that it can:
- provide emotional support as you think about these issues
- bring you closer together as you listen to one another’s feelings – it may even be a relief for everyone to have the subject out in the open
- help the people you are close to prepare for the future
- ensure your wishes and preferences are known and respected, even if a time comes when you can no longer speak on your own behalf.
How to start the conversation
Often, just starting the conversation can be the most difficult step. There are some useful preparations that may help you to approach the subject.
- Plan a good time and pick somewhere you know you won’t be disturbed.
- Consider how you might start the conversation. You could try saying something like: ‘I know it might be difficult, but do you think we could talk about what’s going to happen?’ Starting with a question may help because it gives the other person a chance to say how they feel.
- Write down what you want to say before you meet. It gives you a chance to sort out your thoughts and a list of things you want to cover.
- Let them know in advance that you would like to talk about end of life plans. That way they have a chance to prepare themselves.
- Be prepared to have a number of discussions before you make any plans. If they change the subject or don’t want to talk about it, try saying something like: ‘OK, we don’t have to talk about it now, but can we find another time? It’s really important to me.’
For more guidance on how to navigate sensitive conversations about later life care, including tips on talking to someone with dementia, explore our guide Talking about care options.
Talking is the first step in planning ahead
The law is more complex than people sometimes realise. Family or friends don’t always have the right to speak on your behalf if you can’t speak for yourself. People close to you won’t necessarily know what you would like to happen. For example, they may not know if you would like to be resuscitated if you stop breathing or your heart stops. They may not know where you would like to spend your last days or what sort of funeral you’d prefer.
Not everyone has strong feelings about these issues. But if you do, talking about your preferences is a helpful first step in making sure everyone knows what you want. If you really want to be confident that your wishes will be followed, though, the best thing is to put them in writing. Here are some steps you could consider:
- write an advance statement about where and how you’d like to be cared for
- make an advance decision (sometimes known as a living will) if there are particular treatments you’d like to refuse
- nominate someone to make decisions on your behalf by setting up a Power of Attorney
- make plans for your own funeral.
Who can I talk to about end of life care choices?
It’s usually a good idea to start by talking to the people who are important to you, such as a partner, family, friends or carers. This will help them understand your wishes and offer you appropriate support. But if you need professional advice, or would prefer to talk to someone you don’t know personally, there are plenty of other people that you can turn to.
Primary healthcare team
You may find it helpful to talk to someone in your health or care team. They can explain how care is organised in your local area and tell you about your options. They can also answer practical or medical questions you may have about your condition. Talking to your GP or a community nurse is the best place to start.
If you’re part of a faith group, you could talk to the congregation or community leader or someone else you trust. You might also find local support groups that bring together people dealing with the same health condition. Take a look at our list of charities and other organisations to find some of the charities offering this.
In some areas there are local groups who meet regularly to talk about dying and end of life issues. For example, Death Cafes are groups that meet up to support an open and relaxed discussion about dying. Visit deathcafe.com to see if there is a group near you.
If you’re looking for more in-depth, personal support you could talk to a counsellor. Your GP may be able to refer you or, if you can afford to pay privately, the British Association for Counselling and Psychotherapy (BACP) can help you find a counsellor in your area. It also offers information about different types of counselling and what’s involved.
Counselling can also be of benefit if you're the one caring for someone who is dying.
Your local authority’s social services team are another source of support. They should be able to tell you what care you're entitled to and how to obtain it. They also usually have lists of organisations and charities providing support in your area.
Our Care Services Directory lets you search for local care providers, including organisations providing care at home and local residential homes.
Charities and other organisations
A number of national charities provide information, helplines, local groups and online forums that support people dealing with end of life issues, and their carers.
End of life care helps people approaching the end of their lives to live as well as possible in the time remaining.
We explain your options for extra support if you’re struggling to provide care for a partner, relative or friend.
Get the best out of difficult discussions by voicing concerns tactfully, asking the right questions and listening.