Advance Decision to Refuse Treatment

Many of the people we talked to were unsure what an Advance Decision ( also known as an Advance Decision to Refuse Treatment, ADRT or a ‘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 an ADRT. 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.

An Advance Decision allows a person to make a legally binding refusal of medical treatment in advance of a time when they lose the ability to make the decisions for themselves (Mental Capacity Act 2005). It can be used to set out the specific circumstances in which a person would not want a treatment to be given, or when a treatment should be stopped. It can be used to refuse any treatment, including life-sustaining treatment such as resuscitation, breathing machines, antibiotics or feeding tubes. An Advance Decision will only come into effect if a person loses the capacity to make the decisions for themselves. (See Compassion in Dying for more about advance decisions.)

There is no requirement to use a solicitor to make an advance decision. Many solicitors offer this service, although there is likely to be a fee. Advance Decisions do have to contain certain wording to be legally binding and therefore it is best to follow a template form. Compassion in Dying provides an advance decision form free on their website. (See Information- advance decision section for more details about what is needed to make an advance decision legally binding.)
One man, who was dying of bladder cancer, said that he had arranged everything with a solicitor and 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 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*.

*These verbal and written instructions would only be legally binding if they were signed and witnessed but these wishes could be taken into account by the person’s healthcare team when assessing the person’s best interests.

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 ADRT ‘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 (if you have mental capacity, you can override your Advance Decision verbally at any time.).

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. Compassion in Dying has an information line and produce leaflets for people explaining their rights at the end of life.

An Advance Decision cannot authorise doctors to do anything unlawful. So in the UK this legal document cannot ask a doctor to practice euthanasia. However, a few people we talked to thought that a ADRT 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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Message to others with a terminal illness

People offered many different types of advice to other patients, based on their experiences at different stages of their illness. People are all different and...