Changing the law on decision making for mentally incapacitated adultsBMJ 1998; 316 doi: https://doi.org/10.1136/bmj.316.7125.90 (Published 10 January 1998) Cite this as: BMJ 1998;316:90
Should advance directives have a statutory basis?
- Elaine Gadd, Senior medical officera
Who takes decisions concerning the medical treatment of adults when they can no longer decide for themselves because of mental incapacity? Such incapacity may be temporary, resulting for example from a toxic state; fluctuating in some cases of mental illness; or permanent as a result of severe dementia, severe learning disability, or the persistent vegetative state. Such patients may receive care in a wide range of settings, and their numbers are growing, particularly as a result of an aging population, emphasising the need for legal clarity for patients, their carers, and health professionals. Most doctors will at some time be faced with the care of such a patient and thus need to be aware of the implications for medical practice of proposed changes to the law.
In 1995 the Law Commission proposed that the legal provisions governing decisions on health, welfare, and financial affairs in cases of mental incapacity should be brought under a single statutory instrument.1 Last month the government issued a green paper seeking public and professional views on the full range of the Law Commission's proposals, the practicality of their recommendations, and the need for additional safeguards.2 Of all the Law Commission's proposals those on health care have stimulated the most debate.
In the absence of a valid advance refusal of treatment, healthcare decisions for incapable adults are presently taken by doctors in the best interests of the adult concerned. In the past the courts have become involved when certain serious procedures such as sterilisation or bone marrow donation have been proposed.3 The consultation paper, Who Decides?, asks whether such decisions could instead be taken by a person appointed by the court or given a continuing power of attorney by the patient. If such powers existed, views are sought on whether they should extend to particularly serious decisions such as the withdrawal of artificial nutrition and hydration from a patient in the persistent vegetative state.
The Law Commission's proposal to put advance statements on a statutory basis has already aroused controversy, but we should remember that advance directives already have force at common law and that they cannot legalise euthanasia.4 Neither the Law Commission nor the Government are proposing to change the present unlawful status of euthanasia. A deliberate intent to end life (as in euthanasia) should not be confused with the individual's right to determine what treatment or bodily interference he or she will accept. Thus adults with the capacity to decide have the right, tempered only by statutory provisions such as the Mental Health Act 1983, to refuse any form of medical treatment even if this leads to their death.5 Advance refusals of treatment allow patients to take decisions while they have the capacity to do so about their treatment when incapacitated.6 The Law Commission's proposals are in some respects more restrictive than the present law, requiring that in life threatening situations the advance refusal should specifically acknowledge the risk of death. Similarly, for an advance directive to apply in pregnancy it must specifically include pregnancy. These proposals provide safeguards but may mean that patients need advice on how to ensure that their decisions are expressed appropriately.
The withdrawal of artificial nutrition and hydration from patients in the persistent vegetative state is presently subject to agreement by the High Court, but the House of Lords in the case of Bland recognised that, at some time, other methods of decision making could be appropriate.7 Following the Law Commission's proposals, Who Decides? offers a range of options, including the use of a continuing power of attorney or a medical second opinion as possible alternatives to the court.
Both the Law Commission's proposals and the consultation paper are governed by the principles of maximising autonomy and of acting in the best interests of the incapacitated person. However, a grey area exists over procedures that a doctor may want to perform that are not detrimental to an individual but are also of no direct benefit to that individual. Examples are a buccal smear for genetic screening to help investigate genetic disease in a relative or taking and analysing a blood sample to investigate the cause of the disorder affecting the individual. Such research, if it entails only a minimal risk and burden is, subject to strict safeguards, considered ethical by the Council of Europe.8 The Law Commission noted the view that such procedures may in certain circumstances be ethical but did not consult on the issue. Recognising the need both to ensure a high level of protection for incapacitated people and to improve understanding of the causes of their ill health, the government is seeking views on whether procedures which will not produce direct benefit should ever be permitted and if so under what circumstances. No decisions have been taken on the proposals in Who Decides?. The consultation period ends on 31 March 1998 and in view of the importance of the proposals for medical practice, health care professionals, patients, and carers should ensure their views are made known