Death is one of the most difficult subjects to discuss with family and friends, but talking openly can help everyone. Here are some ideas on how to start the conversation.

When asked, around two-thirds of us say we are comfortable talking about death with our family and friends, according to research commissioned by the National Council for Palliative Care*. However, far fewer of us seem to 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 about getting 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 extremely 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 a place where 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 the person you’re going to talk to know in advance that you would like to discuss your end-of-life plans. That way they have a chance to prepare themselves.
• Be prepared to have several 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.'

Active listening

Just as it can be difficult to initiate a conversation about death, listening can be hard too.

Here at Katharine House Hospice, we know just how important it is to listen - and how difficult it can be too. Advice from our hospice chaplain is to listen with our ears and our eyes. Sometimes it helps to sit in silence with someone and not fill it with words ourselves. When someone has something to say, they will fill the silence, and, if they don’t, just be glad that you are sharing it with them because in that moment there may be nothing to say.

There are, of course, many practical steps that everyone can take, but it all starts with conversations. Not only is it important to talk about our feelings about dying and death, it’s important - if sometimes difficult - to listen to others too. Here are five tips from the Dying Matters website , run by Hospice UK, to focus on when listening to a loved one.

• Be respectful: none of us truly knows what is going to happen after death, whatever our religious or spiritual beliefs. So it’s important not to force our viewpoint onto the person. This is their experience. 
• Be honest: often in difficult situations we tend to search for the ‘right’ or clever thing to say. Or we deny what’s happening, or make a joke of it. Such reactions are understandable – humour has an important place too, even in death – but dying is a profound process that just needs us to be there, and perhaps hold a hand. The act of sharing ourselves openly and honestly can be very liberating and soothing for the dying person.
• Stay calm: you may also feel embarrassed by this kind of emotional intimacy, or fearful of seeing your relative or friend cry or become helpless and vulnerable. Breathe slowly to calm yourself.
• Keep grounded: ground yourself by physically feeling your feet firmly on the floor. This will help you to be present and accepting of what is happening.
• Don't fear tears: it’s okay to cry; crying is a natural response to emotionally charged situations. Being brave enough to express your grief can have a powerful healing effect on your relationship, as well as giving your relative or friend permission to grieve for the life he or she is leaving behind.

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 want resuscitation or something like a feeding tube if the doctors recommended it and you weren’t able to speak for yourself. They also 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 Lasting Power of Attorney (LPA) (note that the wishes in a health and welfare LPA will override an advance decision)
• 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.

Local groups

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. Look at our list of charities and other organisations in help and support at end of life 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.

Counsellors

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.

Social services

Your local authority’s social services team is 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.

Charities and other organisations

A number of national charities provide information, helplines, local groups and online forums that support people and their carers dealing with end-of-life issues. For more information, see our page on help and support at end of life.

Related pages

• Death and dying - what to expect: understand what might happen when you or someone important to you is nearing the end of life.
• Choosing where to be cared for: you may prefer to be cared for at home or in a hospice or hospital; read about the benefits and disadvantages of being cared for at home.
• Planning ahead: a collection of articles that look at planning and decisions for the end of life, including planning care in advance, making a will and Lasting Power of Attorney.

*Source: 'Dying Matters Coalition – Public Opinion on Death & Dying', ComRes, April 2016.

The EPiC Resource Centre is kindly sponsored by Cleenol: working for a cleaner, safer, kinder world.