Ethics briefings

End-of-life and advance directives

On 18 January, a parliamentary bill entitled Medical Treatment (Prevention of Euthanasia) was published by the United Kingdom government. Although ostensibly about the prevention of euthanasia, some lawyers saw the bill as reversing, if passed, the common law on advance decision making and refusals of treatment. Its principal clause focused on the prohibition of withdrawing treatment with the purpose of hastening a patient's death. No legal provision was made in the bill for valid treatment refusal, either contemporaneously or in advance.

Recent research has shown that only a quarter of all UK National Health Service (NHS) trusts have (or intend to develop) policies to improve understanding and compliance with the law on advance directives.1 The study, undertaken by members of pro-euthanasia groups, surveyed trusts to find out about provision to recognise advance directives. They found a high level of support for the development of national guidelines to improve understanding and compliance with the law on advance decision making, and believe that this would help to support a consistent approach to end of life care across the NHS.

Advance directives have traditionally been promoted by pro-euthanasia groups who, in addition to pressing for legalisation of assisted dying, seek to encourage people to take control over the end of their lives in other ways. For similar reasons, pro-life groups which oppose patients' rights to refuse life-prolonging treatment often describe any refusal of treatment which might prolong life as “passive euthanasia” and therefore unacceptable.

Controversy and confusion over advance decision making have led to many years of debate about whether legislation would be helpful. However, the UK government has specifically rejected this. In detailed proposals for decision making for incapacitated adults, the government said that “it is a general principle of law and medical practice that all adults have the right to …