Advance decision (“living wills”)

Many of the people we talked to were unsure what an advance decision (often known as a advance directive or ‘living will’) was, whether it was legally binding, how it differed from a normal will and how they could go about getting one. Only a minority of those interviewed said that they definitely intended making a ‘living will’. Of those who did, some had the paperwork assembled already while others were putting it off until later, or waiting for a suitable occasion to discuss it with family. (See NHS Choices and Compassion in Dying for more about advance decisions.)

An advance decision (advance directive or ‘living will’) is a legally binding written document that indicates the specific wishes of a person to refuse all or some forms of medical treatment, and the circumstances under which this would apply.

Advance decision are legal under UK common law, and are designed to convey the wishes of an adult, when mentally competent, to cover a future occasion, when mental competence is lacking.

When asked about a ‘living will’ only one man said that he had arranged everything with a solicitor. This man, who was dying of bladder cancer, had signed all the necessary documents to make sure that he wasn’t resuscitated. He felt strongly that he did not want to be kept alive artificially. He had discussed the situation with his family and with his GP.

He has signed legal documents to ensure that he is not resuscitated or kept alive artificially.

Age at interview 84

Gender Male

Age at diagnosis 82

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Although only one man said that he had signed a legal document, many other people said they had made some sort of statement about the way in which they hoped to die, and had taken steps to communicate this to others. Some of these people said that they had made a ‘living will’, but from what they said it seems unlikely that they had signed the documents for a legally binding ‘advance directive’ (now known as a advance decision).

People had made their wishes known in various ways. For example, a man with testicular cancer had told three people that he did not want to be kept alive with lots of machines or other artificial means. He said he would not want to be kept alive if he had a stroke or sudden illness that impaired his ability to communicate with other people, or if he became totally dependent on outside help.

If he loses his ability to communicate he does not want to be revived and he wants a peaceful death.

Age at interview 52

Gender Male

Age at diagnosis 37

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A man with progressive multiple sclerosis had instructed his doctors (at the hospital and the hospice) and the district nurses, to write clearly on his medical notes that he did not want to be resuscitated.

A woman with motor neurone disease had written a ‘letter of wishes’ which specified that she did not want to have a tracheotomy and she did not want to be force-fed. She had given the letter to staff at the hospice.

Some people said that they intended to make a ‘living will’, but hadn’t got round to making one. A woman with cancer of the kidney said she planned to make one because she didn’t want to be resuscitated if she were ‘on the way out’. She had consulted her solicitor, who had given her the appropriate forms to complete, but she needed more time to think about ‘the actual terms and conditions’. She didn’t realise that a ‘living will’ was a legal document.

She intends to make a living will because she would hate to be resuscitated if she were on the…

Age at interview 58

Gender Female

Age at diagnosis 56

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A woman with chronic obstructive pulmonary disease had recorded instructions about her death. She didn’t want to be resuscitated and she didn’t want to be connected to ‘breathing machines’. She didn’t want to return to intensive care because she didn’t like the clinical atmosphere and the lack of control that she had over her own body. She was determined to die with dignity and was aware that she had to make a proper ‘living will’ in order to make her instructions legally binding. She had notified the hospital that she didn’t want to be resuscitated but had temporarily rescinded her instructions while she was having teeth removed.

Has written a letter to say that she doesn’t want to be resuscitated and plans to make a proper…

Age at interview 41

Gender Female

Age at diagnosis 24

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Some patients worry that towards the end of their life they may be given medical treatments that they do not want. In May 2010 the General Medical Council published guidance, addressed to doctors. However, it may also help patients and the public to understand what to expect of their doctors, in circumstances in which patients and those close to them may be particularly vulnerable and in need of support. Other members of the healthcare team may also benefit from it, given their crucial role in delivering end of life care.

An advance decision (advance directive or ‘living will’) cannot authorise doctors to do anything unlawful. Thus in the UK this legal document cannot ask a doctor to practice euthanasia. However, a few people we talked to thought that a ‘living will’ was more or less the same thing as euthanasia, and thought that both were morally wrong (also see ‘Thoughts about suicide, assisted dying and euthanasia’).

Thinks that both a living will and euthanasia mean that life may be shortened artificially and…

Age at interview 74

Gender Male

Age at diagnosis 72

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For more information on living wills see NHS Choices and Compassion in Dying.

Last reviewed March 2012.

Last updated November 2012.