The term 'living will' has been applied to a written statement made by an individual in good health and in full possession of their faculties, indicating that in the event of severe disablement, senility or unrelievable pain the person did not wish to be kept alive by artificial means or resuscitated in the event of cardio-respiratory arrest.
The situation envisaged in the living will comprises three main groups of illnesses.[1] In the first place, there are those patients who are terminally ill, for instance with cancer. Secondly, there are those who are seriously and permanently ill and disabled, such as those on long-term life-support and those in the persistent vegetative state. Thirdly, there are those with irreversible dementia. This last category forms the most numerous group of incompetent patients. It is estimated that roughly 10% of all individuals over the age of 65, and 20% of those over the age of 80 suffer from some degree of dementia. Furthermore, the number of old people is steadily increasing. A vivid illustration of this is the fact that in 1952 the Queen sent 200 telegrams to centenarians, whereas in 1989 she sent 1,750.[2]
It is not difficult to appreciate the popular appeal of the living will. People realise that at some time they are likely to end up in hospital or in a long stay institution and lose their autonomy. Decisions may be taken without their consent and against their wish. They see their best protection against dying with indignity as being some form of advance declaration.
Although relatively little has been heard of the living will in Britain, it has been widely debated in the USA for a number of years. This culminated in the passing of the Patient Self-Determination Act which came into force in December 1991. This Act requires Medicare/Medicaid-receiving health care providers to inform patients of their existing rights under state law to refuse treatment and prepare advance directives.[3]
The time has come for doctors in Britain to look at this issue again. It surfaced briefly nearly 10 years ago, and was reviewed in the Journal of the CMF at that time.[4] Over the past year euthanasia and the living will have been discussed frequently in newspapers and magazines, as well as on television; particularly in connection with the problem of the persistent vegetative state. So far, there has been little in the way of medical comment; but in 1991, the Annual Representative Meeting of the BMA passed a resolution calling on its Council to re-examine the question of voluntary euthanasia with particular reference to `living wills'.
Obviously, doctors and nurses are in a better position than most to offer an informed opinion on this matter. They have a wide experience of situations in which patients are unable to make decisions for themselves. Furthermore they can picture themselves in the patient's position and decide whether an advance directive would, in practice, be helpful to the patient and the doctor.
Arguments in favour of the living will
There is no doubt that, in some ways, the living will is an attractive concept. Specifically, it enables the doctor in charge of an unconscious or incompetent patient to take into account the individual's wishes which are otherwise unascertainable. Even if there are relatives to consult, their wishes do not necessarily coincide with those of the patient, and may be biased by financial and other considerations.
The major argument which the proponents of the living will urge in its favour is that it would afford protection to a doctor who compassionately allowed a patient with incurable illness to die, or who appeared to hasten a patient's death by the injection of a powerful pain-relieving drug. It would be a strong defence against an accusation of malpractice to be able to show that the patient had made a written declaration supporting the doctor's action.
Objections to the living will
What then, is to be said against the living will? The first thing is that it assumes that prognosis is a precise art when this is far from being the case. The wording of the living will refers to a medical state 'which is likely to be irreversible', to quote a standard form of words. Such unassailable wisdom is not true to life in the real world. Medical prognosis is on a par with weather forecasting in Britain -- frequently right, but often hopelessly wrong.
This uncertainty in prognosis is well illustrated by the example of a patient who sustains a stroke complicated by dysphagia. It would be invaluable to be able to predict whether the disorder is temporary or permanent. If it is temporary, then a nasogastric tube is the obvious remedy. Rut if it is permanent, the insertion of a tube may condemn the patient to months or years of institutional care in a state of severe disability and artificial feeding, regretting that he had not suffered his stroke on a desert island.
A similar difficulty in prognosis applies to many cases of coma. Patients have awakened after months in an apparently hopeless state, and some have returned to a more or less normal life. The difficulty in prognosis is especially great for a hospital doctor who has not seen the patient before, and who has therefore no accurate picture of his previous state of health. Duncan Vere put the matter in a nutshell when he wrote, `A living will says, in effect, to a doctor: "If you could know what you don't know, then I would like you to act as I believe you would were you to know it."'[5]
Admittedly most, if not all, forms of the living will include the safeguard that decisions shall be made by two doctors in consultation. But there is no insurance that appropriate action is taken. The sharing of the burden might result in neither considering the matter thoroughly. The second objection to the living will is that it indicates the patient's past, rather than his present, attitude to terminal care. This is important, because it is well documented that individuals change their minds on this matter over the course of time. The healthy do not choose in the same way as the sick. Life often seems more precious when you have less of it. For example, a doctor who was in an early stage of cancer extracted from the colleague who treated him the promise to give him a fatal injection when things became bad. When things did become bad, the patient became so frightened and suspicious that he refused to accept the injections which were prescribed for the relief of his pain and other symptoms.
It is a striking fact that when patients with clear minds come face to face with the choice between death and a life burdened with severe disability, most choose life. In a study of 21 patients with high tetraplegia, who survived because of temporary artificial respiration, only one said she wished she had been allowed to die. Two were undecided, but the remaining 18 said they would wish to be temporarily ventilated again if the need arose.[6]
So a declaration cannot be accepted as an expression of the patient's current wish. It is arguably more reliable than the recollection of spoken statements, but it is much less conclusive than the contemporaneous statement of a competent, informed and autonomous person.
The challenge to the medical profession
The greatest objection to the living will is that it puts the onus on the public to demand a quality of medical care which they are entitled to expect automatically. Patients are entitled to expect treatment which is compassionate and intelligent; the quality of treatment which a doctor would wish to receive himself. If this is not, in fact, the quality of treatment which is provided for patients with incurable illness, then it is the profession rather than the public which needs to take action.
The pressure for a more widespread use of the living will must be seen for what it is -- a vote of no confidence in the medical profession. In spite of all that has been achieved through the hospice movement, there is an undercurrent of feeling that the medical profession is committed to prolonging life rather than to relieving suffering. The living will should be seen as a sort of Trojan horse aimed at the legalisation of euthanasia. It is significant that, although it does not demand that active steps should be taken to end life, the advance declaration has, nevertheless, in the USA at least, been vigorously espoused by pro-euthanasia organisations.
The medical response
The reaction of the medical profession must not be one of pique or injured pride. We must admit that there is an element of truth in the widespread fear of a prolongation of dying. It is not entirely a figment of the lay imagination. Indeed, we know that it sometimes happens to doctors and their relatives when they become patients.[7,8]
It is essential to strike a right balance. Emergency treatment is often brilliantly successful, and nothing must be said or done to weaken the emphasis on the primary duty of the doctor to save life and restore health. But there comes a time in the life of every patient when these options are closed, and treatment would be worse than useless. When that stage is reached, the easing of death should be seen as a positive achievement. Futile treatment and the prolongation of dying should be viewed as a serious failure of care. If therapy is withheld as being inappropriate, such action must not be condemned as `playing God'. The withholding of treatment is no more `playing God' than is the institution of treatment. Neither action ensures the outcome. The consultant has the responsibility of discussing the matter fully with the caring team and explaining the reasoning behind any decision not to treat or resuscitate.
What else should be done? There is no doubt that more research is needed into the prognosis of emergencies. We need to know more precisely in what circumstances treatment is likely to be effective, and when it is likely to be ineffective. The prognosis of stroke complicated by dysphagia is one obvious area for study.
An attempt should be made to define other possible categories of brain death in addition to the established category of brain stem death. Jennett has shown that patients in the persistent vegetative state behave in many respects as if they were brain dead; yet the brain stem is intact, so they do not fulfil the standard criteria for brain death. 9 Might there prove to be a category of brain death based on widespread destruction of white matter and cerebral cortex?
Doctors should attach a much higher priority to being open and available to patients and their relatives. Open communication is the best safe-guard against restrictive legislation.
Students and junior doctors coming through the medical schools must be better educated, both by precept and example, in the principles of appropriate management of medical emergencies and in terminal care. Any tendency for doctors and nurses to feel they have a duty to keep their patients alive for as long as possible, and to look on death as a personal failure, must be corrected.
Conclusion
There is little to be said in favour of the living will. Indeed it hovers between the unhelpful and the illegal. There is, on the other hand, everything to be said for doctors taking seriously the need to improve standards of terminal care. It is no exaggeration to say that the future of the profession depends on it.
