Advanced Directives:
How and when they may be invalid

Issues surrounding living wills and euthanasia

One of a series of booklets aimed at helping young Catholic doctors
by Dr Adrian Treloar, Dr Anne-Marie Williams and Dr John Henry

Produced by the CATHOLICS IN PRACTICE COMMITTEE OF THE GUILD OF CATHOLIC DOCTORS

Summary

Advance directives are being signed in this country and their introduction poses new challenges to doctors. Because each individual is unique, and because illnesses are varied even within the same diagnosis it is not possible to predict how any one individual would be should they develop mental incapacity. In view of this any directive preventing treatments other than those which would cause significant suffering or erosion of human dignity, may act against the best interests of the patient. There is a significant danger that directives which prevent treatment other than analgesia would require patients to be left to die at times when this was inappropriate. Such action could serve only to increase suffering. Such enforced medical neglect would cause ethical difficulties for relatives and medical attendants, and this might in turn create a "need" for active euthanasia. As many people have a limited understanding of the nature of illnesses that cause mental incapacity (no-one can know how such illnesses would affect them), many will have significant misperceptions which should make their directives invalid. The healthy do not choose the same way as the sick. It is therefore important that adance directives should not be legally binding but rather that they should act as guides to the wishes of patients should they become mentally incompetent.

Introduction

Advance directives (or living wills) are being signed in this country and will become an important ethical issue for junior doctors and consultants soon. In essence an advance directive is an instruction signed by a person which dictates what a doctor will do should the person get into a situation where they are no longer able to direct their own treatment (such as dementia, advanced cancer with confusion, life support etc). The impetus for this has come in part from people seeing patients treated intensively for long periods (eg the Cruzan and Quinlan cases in the USA) when there seems little hope of any improvement. It is clearly necessary to do what is best and right for an individual patient and if this clearly disagrees with the contents of a advance directive then the directive should not be followed. It seems inevitable that a test case will occur on this issue and the defence of the doctor concerned is likely to be based on the issues described below. Many of the basic principles are closely related to issues surrounding euthanasia and it is of note that the impetus for advance directives is coming from the pro euthanasia lobby.

What is good care?

Every human life is worthy and should receive equal respect for its fundamental rights. This right is not based upon status or ability and so we must necessarily champion the disadvantaged, demented and others who cannot speak effectively for themselves. There is an interesting conflict here with modern society, which being largely based on materialistic principles, sees patients as treatable according to their status; be it intelligence, social or financial. The advantaged get the very best treatment, while the disadvantaged, mentally ill, demented, the handicapped and those whose health care is expensive compared with their contribution to society, often receive less than the best. We must state clearly that each person is equally deserving of that which can be offered. On the other hand it is also clear that treating people overenthusiastically when they are dying or when they suffer excessively, for limited gains, is inappropriate. Such actions can also fail to recognise the dignity of individuals and can dehumanise them. The Church calls such treatments disproportionate and states that they are unnecessary and may be wrong [1].

Thus we should emphasize that all human beings are equally dignified and special, that human life of its nature requires always to be treated with dignity and respect and that all individuals should therefore be positively accorded that dignity while at the same time not being subjected to unfruitful, painful, intensive or other treatments where there is little prospect of benefit.

Medicine should be able to limit its intervention along these lines and if it did, then the dilemmas of the Quinlan case etc might not have arisen. Given that medicine may fail to do this it might, superficially, seem reasonable for people to make requests about their treatment in the form of an advance directive. 

Requirements for advance directives to be valid

To make an advance directive is in many ways similar to making a will except that it applies to ones medical care before death rather than to ones property after death. To make a legally binding will you must possess testamentary capacity. In order have this for a conventional will a person needs to:

It is similarly necesary to have testamentary capacity in order to be able to make an advance directive. Criteria similar to those above would have to be fulfilled and it seems clear that criteria 1 2 and 5 must be fulfilled. It may be that criteria 3 and 4 should also apply as it would be necessary to predict one's situation (know one's property) and to be aware of one's responsibilities (know who has a claim on ones property) in the situation predicted by an advance directive. It does not appear that all the criteria can be met if the advance directive is too specific. The problem with advance directives is that they are made at a time when the person concerned is both not in the situation to which the directive applies and cannot know what that situation will be.

Understanding the consequences of a will (criterion 2)

To take an example from a currently circulating proformae for advance directives [3,4] someone who has dementia may have previously written a directive stating that "no treatment shall be given that is aimed at prolonging or sustaining life" and that "any distressing symptoms be fully controlled even if that shortens life". The problem here is that "any distressing symptom" could mean any symptom at all even where there are many positive things left in life. So to leave symptoms (eg mild pain) less than fully treated would break the conditions of the directive, even though treatment may destroy many of the other positive things still remaining in a persons life at that time. Given that the directive would now be acting against the best interests of the patient the directive would have to be considered invalid. It seems inconceivable that a directive could remain in force where it was acting against the interests of a patient in a situation the patient had not predicted. The only way around this would appear to be for a directive to request simply that treatment be reasonable and that the dignity of the individual be respected at all times.

Knowing the nature of the predicted situation (criterion 3)

In terms of advance directives this appears to equate to the ability to predict one's situation at the time of enactment of a directive with reasonable accuracy. It is, however, clear that the sort of illnesses to be covered by advance directives are varied and unpredictable. Dementia, for example, can be a much more positive experience both for individuals and for their families than is generally believed provided that good and appropriate care is provided (whether at home or in an institution). Similarly the nature and course of terminal cancer is so varied that it is impossible to predict individual situations in advance. The hospices have led the way in showing how diagnoses previously seen as ones of pure suffering and death can be transformed. It is therefore impossible to predict closely enough (if at all) what you yourself would be like should you acquire disorders covered by directives and so this criterion cannot be fulfilled.

Freedom from an abnormal state of mind (criterion 5)

It is generlly accepted that any delusions that affect judgement in making a will invalidate the will. It has been shown that the healthy do not choose in the same way as the sick [5]. Many people do not understand the nature of illnesses such as dementia and do not realise that life can still be both meaningful and worthwhile provided that care is adequate. Although such misconceptions are not delusions the gulf betwen misunderstanding and reality may be so great that the directive should be invalid.

Quality of patient care

Strict rules imposed upon treatment by an advance directive may well make the best care more difficult to achieve because of the limits imposed by the directive. A directive forbidding any active treatment in dementia could mean that a person still capable of happiness and of giving their family the opportunity to care for them in the best possible way, would have to be left to die with all the trauma that could mean for a family who knew that death was premature at that time. This could clearly be a disaster for both the patient and the family. Of even greater concern however is the possibility that if directives required that patients be left to die untreated (perhaps in a slow and distressing way) they would create a "need" for euthanasia as the only way out of such a situation.

Problems for relatives and doctors

When questions of inheritance, cost of proper nursing care, and commitment of personal time to the care of a relative occur, conflicts of interest arise that are recognised even in the absence of advance directives. Relatives will be the usual people chosen to inform doctors of the contents of directives and to act as advocates for patients. If relatives or others believed that the time had come for the directive to be enacted and the doctor felt this was premature, the doctor would be duty bound to act for his patient. While a second opinion might be valid here, to simply refer to another doctor who was known to favour early enactment of directives would be unacceptable as the doctor's duty of care to the patient would be abandoned. Conscience should prevent us from doing this.

Legal implications of advance directives

In the case of a will, people have a right to dispose of their property. In the case of an advance directive, the disposal of human life is being discussed. In Christian tradition life comes from God and belongs to God and so a person cannot dispose of their life. In British law the decriminalization of suicide in 1961 only removed the penalty; it did not give people the right to take their own lives. There is a crucial distinction both legally and clinically:- If legislation gives people the right to direct that reasonable and appropriate treatment be withheld with the result that life is thus shortened and ended, this distinction will have been destroyed. If they were legally binding advanced directives amy coerce another person into assisting suicide. To give people a legal right to direct the ending of their lives would be the same as legalising euthanasia with all the uncontrollable problems that that entails.

In many states in the USA advance directives have legal validity and must therefore be respected. Many formulae for advance directives describe precisely the type of process that a competent doctor would follow. Some state that the persons life should not be prolonged unnecessarily should there be no hope of survival, and that pain should be relieved even if it shortens life. Such directives may help to inject common sense into clinical situations where doctors may be failing to treat a patient reasonably or where the law does not permit a treatment to be discontinued. On the other hand if a directive contains an indication that states clearly that for example [4] "in permanent mental impairment treatment should be limited to keeping me comfortable and free from pain", there is a grave risk that worthwhile and productive life will be sacrificed through obedience to a directive that proscribes active treatment, however inappropriate such adherence may be. To comply fully with such a statement could make symptom control extremely difficult as well as seriously eroding the dignity of the patient. Such legally enforced medical neglect, leading to a hastened death is but a short step away from active euthanasia. Indeed, as argued above, the enforcement of such neglect would create a "need" for euthanasia. This type of euthanasia is openly carried out in Holland (over a thousand patients were given euthanasia without their consent in 1989 [6]) and covertly in this country where doctors admitted in court during the Cox case that they had at times taken active steps to hasten the death of a patient. There is thus a real danger that advance directives that prohibit any active treatments will seriously weaken respect for human dignity at all levels. Such proscriptive directives would also appear to be a first step towards requiring the legalisation of euthanasia.

It is fortunate that the Select Committee of the House of Lords on Euthanasia reported in 1994 that it did not believe that legislation to make advanced directives legally binding would be appropriate and that legalisation of euthanasia would not be appropriate. It is however of great concern that it was considered that basic nutrition is considered a medical treatment which can be justifuably withdrawn in patients who are unwell. The Bland case involved a patient who had been kept alive by antibiotics and many other active interventions and whose death was eventually sanctioned by starvation accompanied by heavy sedation. We do not believe that it is necessary to give antibiotics in such situation (an active treament) but we do believe strongly that basic nutrition is a right whose withdrawal in such a way is not justified.

Conclusion

As each person is unique, future illnesses cannot be accurately predicted. Therefore advance directives cannot be made with good understanding and knowledge of the situations in which they may apply. This means that beyond requesting that unreasonable and prolonged treatment which would cause extensive suffering be avoided and that the person be accorded the dignity that a human being deserves, advance directives could not be binding upon doctors, as testamentary capacity cannot extend to future predictions about the state of ones health and to the disposal of ones life. Patients should be able to request that etensive suffering be avoided and the human dignity be preserved. This could be done in the context of advance directives or statemnts made by relatives that should serve as some guide to medical treatment. It would be innapropriate for advance directives to be legally binding.

Addendum

The Church has several major statements on care of the severely unwell.

References

  1. Sacred Congregation for the Doctrine of the Faith,Declaration on Euthanasia, Catholic Truth Society (Do 523), London
  2. Oxford textbook of psychiatry, Edited M Gelder, D Gath, R Mayou, Pub Oxford University Press 1989
  3. Voluntary Euthanasia Society, London
  4. Living Will Form, Published Terence Higgins Trust, London
  5. British Medical Journal 1985, 291; 1620
  6. Report to study medical practice concerning euthanasia, Commission of the Dutch Government under Prof Rammelink, The Hague 1991, ISBN 90-39 90124, Vols 1 and 2.
  7. Second Vatican Council, Gaudium et Spes, para 27
  8. Pope Pius XII, 1957, 49 Acta Apostolicae Sedis 129-47