End of life care : Why plan ahead?

If you have a terminal illness, or are approaching the end of your life, it can be a good idea to record your views, preferences and priorities about your future care.

Planning ahead like this is sometimes called advance care planning. It involves thinking and talking about your wishes for how you are cared for in the final months of your life and when you are dying. This is in case there's a time in the future when you are unable to take part in the discussions and decision-making yourself.

An example of planning ahead is the ReSPECT process, where you discuss your wishes and document them in a Recommended Summary Plan for Emergency Care and Treatment (ReSPECT).

This is useful for guiding your doctors and other healthcare staff in making decisions about emergency care and treatment if you can't take part in these decisions yourself.

Why should I plan ahead?

Planning ahead can help you receive the care you want, and can also help to make things easier for your partner and family when you are nearing the end of life.

Some things, such as telling people you love them or making a "memory box" for someone to remember you by, could help your family and friends in their bereavement after you die, but you don't have to do any of these things if you don't want to.

Helping your loved ones

You may sometimes think about what will happen if you become seriously ill or disabled. Would your partner or family know about the kind of care you would like to receive, or where you would like to die? Would they know if you would want to be admitted to hospital, resuscitated (helped to start breathing again, if you stop) or if you want to refuse any kinds of treatment?

These might not be easy topics to think about but, by discussing your wishes with your family, you could be saving them from having to help doctors make difficult decisions later on without knowing what you would have wanted.

If your partner or relatives know, for example, that you don't want to be resuscitated and this has been documented in advance, it can help them understand this and make sure doctors and other health professionals looking after you know this too. They will all know they are helping you to get what you want or not have treatment you don't want.

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How can I plan ahead?

There is no set way of planning ahead, but there are some useful steps you can take. It may help to read the Planning for your future care (PDF, 292kb) booklet produced by the National Council for Palliative Care.

You could also think about:

  • starting the conversation with your partner, family, carers and health professionals
  • exploring your options, such as where you can choose to be cared for – this will probably involve talking with health professionals and other experts, especially if you have any particular questions or worries
  • thinking about what your wishes and preferences are
  • refusing specific treatment, if you want to, using a legal document called an advance decision to refuse treatment
  • legally appointing someone, called lasting power of attorney, to make decisions for you in case you are not able to do so yourself in the future
  • letting people know your wishes through talking or writing them down, or both

Writing down your wishes and preferences is called a care plan or advance care plan. For an example of a care plan, see the Preferred Priorities for Care booklet (PDF, 63kb).

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Emotional and practical issues

As well as thinking about your future care, there are emotional and practical issues you might want to consider, such as:

  • any questions or worries you have about illness and dying that you would like to discuss
  • how you would like your funeral to be
  • making memory boxes, books or videos for your family and friends
  • legal and financial matters, such as making a will or planning for the care of anyone who relies on you, such as your children

You might already have strong feelings about these topics, or may want to think them over or discuss them with your partner or family. Find ideas on how to start talking about death and dying.

The Dying Matters website has a 15-minute film of Dr Kate Granger talking about her experience of living with terminal cancer and planning ahead for her care.

Healthtalk.org has videos and written interviews of people talking about planning for the future.

Find end of life care services near you.

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