Living with a terminal diagnosis can make you feel isolated and alone, even though life is going on around you. It can feel very difficult to talk about your illness or the fact that you are dying, but talking with your loved ones can help to broach those feelings of isolation. You or your family and friends may even find it a relief to have the subject out in the open, even if you find it upsetting.
Not talking can create worries or distance between you and the people who are important to you, even if you are usually very close. Talking about your illness and death can help to make you feel closer and to deal with the future, and your worries, together.
Starting the conversation
You might want to talk about any number of things, including your feelings about death, your worries, your fears, your wishes for your future care, your funeral or things you would like to give to people.
You don’t have to talk about everything at once. Different situations work for different people. There is no right or wrong way to start talking about dying. If you find it hard to bring up the topic, some of the suggestions below might help.
- Choose a time and a place where you won’t be disturbed. You could try saying something like: "It would help me if we could talk about my situation. How do you feel about that?", or "I know it might be difficult, but do you think we should 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 about it.
- Listen to what they say, and 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 I hope we can talk about it another time. It’s something I would really like to do.”
- It is normal for people to get upset or feel emotional when they talk about the death of someone they love. Try not to let this put you off. Getting upset or crying can be a release from any worries or pressure that people are feeling. Once this pressure is released, it may help you feel able to discuss things more openly.
Things you might want to say
If you know you are coming to the end of your life, it is important to try to say the things you would like to say to the people you care about. This might be your partner, parents, brothers and sisters, children, grandchildren and friends.
You can tell people you love them. You might want to tell them they have meant a lot to you, or that a disagreement you had does not matter. It might feel very emotional. If it becomes overwhelming, say so, and suggest talking again another time. You could write a letter, make a video or fill a memory box with things that remind you of the times you have shared.
You can also think about dealing with any emotional unfinished business. If there is anyone you feel you need to apologise to, you can say you are sorry. If you have had an argument with someone, you could consider getting back in touch. If the damage from an argument cannot be healed, try not to worry about it. At least you know you have tried your best.
If you feel you are not ready to bring up the subject of your death with your loved ones, you might want to discuss it first with someone less close to you, such as a doctor, nurse or counsellor.
Booklets that may help
You might want to have a booklet with you about planning ahead or about things to think about if you are dying. You could use the booklet as a starting point for the conversation, for example saying something like, “I have been reading about end of life care in this booklet, would you like to have a look?”
The NHS National End of Life Care Programme has produced a booklet on advance care planning. It includes information on the options available to you, letting people know of your wishes and appointing someone to make decisions for you. You can read Planning for your future care: a guide (PDF, 3MB) online or you can order a free copy by emailing information@eolc.nhs.uk.
Preferred Priorities for Care (PDF, 62KB) is a document created to help people with cancer think about their preferences for future care, and for them to write down their wishes. It can be useful for anyone who is living with a terminal (life limiting) illness, and may help you to start a conversation with your partner, family or carers.
There is useful advice and a checklist of things to consider in the BBC's booklet, Planning a good death.
