Advance statements - BMA views


November 1992
Revised April 1993
Revised May 1995
Introduction
First BMA guidelines - 1992
Patients and doctors often discuss in advance how the predictable stages of an illness should be managed in order to reflect the patient's own wishes and values. Advance discussion and decision making is particularly important when there is a likelihood of the patient's mental capacity becoming impaired. In 1992, the BMA issued its first statement supporting the principle of advance statements as a method of expanding patient choice beyond the onset of mental incapacity.

BMA Code of Practice 1995
The Code of Practice gives guidance to health professionals about the drafting and implementation of advance statements (living wills) by patients concerning their future medical treatment. It includes advice on a range of statements, including those specifying treatment preferences, accounts of fundamental life values, advance authorisation of treatment and anticipatory refusals.

Legislation
The Association was initially reluctant to see the introduction of legislation since it considered that respect for advance statements could be achieved by educating health professionals and the public about them. Recent legal cases have now shown beyond doubt that when an informed and competent patient makes an advance decision to refuse specific treatments which would otherwise be given later, that refusal will be legally binding on doctors. Thus, in January 1994, the BMA Council approved in principle the concept of limited legislation to translate the common law into statute and clarify the non-liability of doctors who act in accordance with an advance statement. Draft legislation including provisions on advance statements was published by the Law Commission in March 1995 and may eventually be enacted.

What is an advance statement?
An advance statement is a mechanism whereby competent people give instructions about what is to be done if they should subsequently lose the capacity to decide or to communicate. It may cover any matter upon which the individual has decided views but is most often quoted in connection with decisions about medical treatment, particularly the treatment which might be provided as the patient approaches death. Such a document may also be called a "living will".

The fundamental aim of the advance statement is to provide a means for the patient to continue to exercise autonomy and shape the end of his or her life. The principle is not new. Patients who are aware of approaching death have often discussed with their doctors how they wish to be treated. The advance statement registers these views in a more formal way and can be seen as part of a broader willingness to discuss death openly and to deal with the anxieties patients have about what might happen to them if they become mentally incapacitated.

Advance statements are sought by those who have some form of advance warning by age or illness of approaching death or of impending mental incapacity. Commentators have envisaged that the most common condition for which an advance statement would be appropriate would be senile dementia of the Alzheimer type or dementia related to arterial disease. The later stages of dementia always lead to mental incompetence but by means of an advance statement, the individual can influence the provision of treatment as far as this can be foreseen.

Written advance statements are not in the same category as oral remarks a patient might make impulsively or when despondent. The latter are unlikely to be indicative of a considered view, whereas a written advance statement, in the absence of contrary evidence, should be regarded as representing a stable opinion.

Legal scope of an advance statement
In 1992, the Appeal Court (Re T (1992) 4 All ER 649) indicated that when an informed and competent patient has made an anticipatory choice which is "clearly established and applicable in the circumstances" doctors would be bound by it. This view was confirmed by later cases (Airedale NHS Trust v Bland (1993) 1 All ER 859 and Re C (1994) 1 All ER 819). In these cases, discussion revolved around the legally binding nature of an informed refusal of specific treatment(s). A clear example of a document which would be legally binding at common law is the directive drawn up by Jehovah's Witnesses declining blood in all circumstances and releasing the treatment provider from liability for the consequences. Documents which are equally specific would also be binding and a doctor who knowingly acted in disregard of such a competent advance refusal would be likely to be held guilty of assault. Conversely, a doctor who acts in good faith in accordance with an apparently valid advance statement would not be considered negligent. The Law Commission has published draft legislation designed to clarify this situation, also proposes that patients should not be able to refuse "basic care" and hygiene through an advance statement although they can legally refuse specific medical procedures.

Health care providers should, of course, respect any general statement of a patient's wishes and feelings. A document outlining such factors will be helpful in achieving medical decisions which reflect the long-held values of people who are now mentally incapacitated. Such a document may also be called an advance statement or living will but if it lacks precision regarding the drafter's intention it would be unlikely to have the same force of law as a specific refusal. People who wish to make a general statement may wish to support that by nominating a proxy to speak for them about specific aspects of treatment (see below).

The courts have also made it clear that patients can authorise or refuse treatments but cannot make legally-enforceable demands about specific treatments they want to receive. Nor can health care providers be required to act contrary to the law and so a current or advance request for active euthanasia would be invalid.

Assistance with drafting
An obvious problem with an advance statement is that patients may fail to foresee the circumstances that will arise and therefore may make a statement which is contradictory or confusing. The likelihood of this eventuality is diminished when patients are aware of any predictable phases of their disease and the likely future treatment options. For this reason, the BMA very strongly recommends that patients who draft advance statements should do so with the benefit of medical advice. Ideally, this should be part of a continuing dialogue between doctor and patient. Patients are encouraged to review their advance statements at regular intervals and indicate the document's continuing validity by a date stamp or sticker.

The BMA receives many enquiries requesting examples of draft directives. The association has always maintained that any clear and coherent statement by an informed patient should suffice and that it is not necessary to adopt a particular form of words. A witnessed signature, however, is advisable. Drafters should obviously bear in mind the principal objective: whether this be to produce a very specific and legally binding statement along the lines of the "Medical directive/release" used by Jehovah's Witnesses or a more general statement of intent. The BMA's Code of Practice gives detailed advice about aspects of information-giving and drafting.

An increasing number of organisations are producing variations of forms and cards. Among the first British versions were those produced by the Voluntary Euthanasia Society and the Terrence Higgins Trust. The latter provides models of advance statements and health care proxy forms which are not only useful for HIV patients. A range of forms and cards, originally developed in the United States, are also becoming more common in this country.

Key things that should be borne in mind, whatever format is used, are:
a) The need to indicate that the signatory is competent and understands the implications of the document (joint BMA/Law Society guidance on assessing competence will be published in mid-1995);
b) To be clearly legally binding, the document should be signed by the patient who appears informed about the treatment options and their implications and the refusal should address the specific treatments likely to be proposed;
c) Not only must the document be applicable to the circumstances which arise but also available to the health care providers at the time when treatment decisions need to be made.
The onus for ensuring that the advance statement is appropriately drafted and available for those to whom it is addressed lies with the patient. The BMA suggests that patients who have drafted an advance statement carry a card indicating that fact as well as lodging a copy with their doctor.

Healthcare advocates and proxy decision makers
Patients can also make their views known by appointing, in advance, another person to make decisions for them in the particular circumstances which arise. The precise role, powers and title of a proxy decision-maker are not currently defined by either custom or law. The BMA thinks it would be helpful for patients facing loss of capacity to nominate a person they trust to express their views later. Pending clarification in law, the BMA believes that in cases where such a person has been nominated by the patient, the criterion to be followed in decision making would be that of "substituted judgement", with the agent acting as a sympathetic interpreter of the patient's own values. At present it is unclear as to whether a refusal of treatment by a nominated proxy (in the absence of a specific advance statement) would be legally significant and much might depend on the evidence which could be produced to show that the decision reflects the patient's former views.

In all cases in the absence of clear guidance from the patient, doctors must make treatment decisions with a view to the patient's best interests. Knowledge of the patient's views and values, either through a document or a nominated proxy, are likely to be instrumental in clarifying the individual's best interests.

Doctors' responsibilities
For ethical and legal reasons, doctors must take note of advance statements. Doctors, having been notified that an advance statement exist, should make all reasonable efforts to acquaint themselves with its contents. In cases of emergency, however, necessary treatment should not be delayed in anticipation of a document which is not readily available.

The patient's refusal of specific treatments must be respected but does not imply or justify abandonment of the patient. Doctors and health care institutions should offer such medical care and pain relief as would appear acceptable to the patient and appropriate to the circumstances.

Doctors cannot be obliged to act contrary to their consciences and some have a religious objection to the curtailment of life-prolonging treatment, even at the patient's request. The BMA, however, considers it unethical to carry out any medical procedure intended to benefit a patient when that person has indicated a competent refusal. Depending on the circumstances, such an action may also constitute an assault in law.

The Association advises its members to consider their own views and inform patients at the outset of any absolute objection the doctor has to the principle of an advance statement. The patient then has the opportunity to think about seeing another doctor or re-considering the importance he or she attaches to the advance statement. The Association believes it is not ethically acceptable for a doctor to simply put an advance statement on file, without discussion and with the expectation of claiming conscientious objection when the time comes for its potential implementation. Doctors who are unexpectedly faced with an advance statement, with which they feel unable to comply, should relinquish the patient's management to colleagues.

Questions arise about the ethical status of discontinuing a treatment which was already initiated prior to the discovery of an advance statement. The BMA considers that late discovery of an advance statement after life-prolonging treatment has been initiated does not mean that the directive cannot be implemented. Treatment should be discontinued in accordance with the directive once it is known, unless there is doubt as to the document's validity. If the patient nominated a proxy decision-maker, his or her views should also be sought with a view to confirming the patient's intention in cases of doubt.

Health professionals faced with questions from their patients about advance statements or required to consider the implementation of an advance statement should consult the BMA's Code of Practice.

Summary of points
1. The BMA strongly supports the principle of an advance statement. Through advance statements, patients have a legal right to decline specific treatment, including life-prolonging treatment.
2. Patients cannot use advance statements to insist on the provision of certain treatments but they may authorise or refuse treatments.
3. Drafting an advance statement is the patient's responsibility. It is recommended that this be done with medical advice and counselling as part of a continuing doctor-patient dialogue.
4. It is the responsibility of the patient to ensure that the existence of an advance statement is known to those who may be asked to comply with its provisions.
5. No person has a legal right to accept or decline treatment on behalf of another adult. Nevertheless, in addition to advance statements, the BMA recognises that the nomination of a health care proxy by the patient may be another helpful development in communicating the patient's views when the individual is no longer capable of expressing these.
6. It is strongly recommended that patients review their advance statements at regular intervals and destroy rather than amend the advance statement if they feel dubious about any previously expressed choices.
7. The BMA urges its members to consider their own views and inform patients at the outset of any absolute objection the doctor has to the principle of an advance statement. Doctors with a conscientious objection to curtailing treatment are not obliged to comply with an advance statement but must be ready to step aside. They should ensure that at the time of drafting, the patient is aware of the situation and can make an informed choice.
8. The Association encourages doctors to raise the subject of an advance statement in a sensitive manner with patients who are anxious about the possible administration of unwanted treatments at a later stage.
9. Late discovery of an advance statement after life-prolonging treatment has been initiated is not sufficient grounds for ignoring it.
10. There is a significant ethical and legal difference between the concept of an advance statement and the issue of euthanasia. In supporting advance statements, the BMA confirms its commitment to the fundamental and legitimate right of patients to accept or reject treatment options. This is in contrast with euthanasia, where the primary purpose is to actively cause or hasten death. Euthanasia is illegal and the association's conclusions should not be seen as supporting it.

Requests for further information and all enquiries should be directed to the Medical Ethics Committee Secretariat, Medical Ethics Department, BMA House, Tavistock Square, London WC2H 9JP. Tel: 020 7383 6286.

© British Medical Association 2008

Log in to your BMA here