Planning medical care - advance decisions

If someone is worried about worsening health, they may want to think now about what kind of medical care and treatment they would like in the future, especially if they should become unable to speak for themselves.

In the past, documentation of such wishes was known as a ‘living will’. The more up-to-date term is “advance decision”.

There is no set legal format for an advance decision. The person may make a statement of their wishes and preferences, in writing, as a recording or in an oral statement (with witnesses).

The statement may cover both medical and non-medical matters. It is not always legally binding but the statement may be used to help identify a person’s best interests if they lose the capacity to make their own decisions in the future.^{1 2}

An advance request in favour of particular treatments may be made. The physician should consider this but is not legally bound to provide the treatment if they do not think it is in their patient’s best interests.

However if a patient is likely to lose capacity to make decisions soon, doctors must give the patient the opportunity to discuss what treatment and care they want towards the end of their life. This could involve preparing an advance decision or granting lasting power of attorney.³

A person with mental capacity can cancel an advance decision they have previously made. It is best to put this in writing and inform everyone who was aware of the existence of the advance decision.

If a person wishes to avoid life-sustaining treatments in the future, such as resuscitation, a properly prepared statement should be respected by healthcare professionals and is likely to have force in law.

This statement must:

• be in writing

• be signed by the person and a witness

• include an affirmation that the treatment is refused even if life is at risk

• not call for the withdrawal of basic care and comforts (food and drink by mouth, washing, pain relief etc.).

Moreover, advance refusals that are not legally binding should still be taken into account by doctors as evidence of the person’s wishes.³

It’s recommended that the person keeps a copy of the statement, places a copy in their medical records and informs close family and friends of its existence. If the person has appointed a health and welfare attorney, that person should be told about the advance decision.⁴

There should be no doubt about the mental capacity of the person making an advance decision. If there is any uncertainty over this point or if it might be challenged later, it is vital that the person is formally assessed by a doctor as having mental capacity to make the decision. It is also important to ensure there is no element of coercion or compulsion.¹ 

If a person has prepared both an advance decision and a Lasting Power of Attorney, the document which was created at a later date takes precedence.

A pro forma for an advance decision can be found on the NHS End of Life Care Programme website, along with information resources for professionals and individuals and links to key guidance on advance care planning. The Compassion in Dying charity also offers a pro forma for advance decisions. 

Somebody considering an advance decision should talk to their doctor,¹ especially if they may want to refuse life-sustaining treatment. This will help ensure that the person has understood all their treatment and care options and that their wishes are documented in a way which makes medical sense.

Advance decisions are known as advance directives in Scotland. However the Mental Capacity Act 2005 does not apply in Scotland, and it is not clear whether advance directives are legally enforceable under the Adults with Incapacity (Scotland) Act 2000. The website of Alzheimer Scotland provides more information on this topic.⁵

There is no legislation covering the use of advance decisions in Northern Ireland.