ROBIN DOWNIE - MAKE UP YOUR MIND WHILE YOU STILL HAVE ONE
Make Up Your Mind While You Still Have One
B.M.A. Conference on Advance Statements 5th April 1995
In this talk I want to look at four issues. First, I want to suggest one reason why doctors and nurses have ethical problems over the idea of advance statements. This will involve looking briefly at what I shall tell 'the main ethical tradition' in medicine, and then at the main challenge to the tradition from the patients' rights movement. Secondly, I want to suggest a way of interpreting the doctrine of consent which will reconcile the two points of view and so legitimise advance refusals at least. Thirdly, I want to suggest reservations about the doctrine of C.P.A. in this context. Finally, I want to look at some objection to advance statements.
(1) The main tradition and its critics
From the time of Hippocrates until the 1960s medical ethics was seen entirely in terms of doctors' duties to patients. These duties have traditionally been thought of as those of not harming the patient (non-maleficence) and of helping the patient (beneficence). Medical understanding of these duties has been affected by three different currents of thinking (Jonsen 1990).
The first current is the one flowing from the origins of modern medicine in the Greek world. When the Hippocratic Oath required the physician not to harm but to help, it was against a background of Greek craftsmanship. The art or craft (techne) of the carpenter is to work on wood according to the nature of wood. There are bounds or limits concerning what is appropriate for each craft, and to go beyond these bounds is to be guilt of hubris or pride. Hence, when the Greek doctor promises not to harm and to do good to the patient what is intended is much the same requirement as that laid on the carpenter when, as a good craftsman, he tries not to damage his material, wood, but rather to bring out its nature as wood. We might term the Hippocratic ethics that of the competent craftsman. The relevant portion of the Hippocratic Oath really indicates that there are constraints on the skill or art of medicine; it does not truly involve beneficence in our modern sense.
But beneficence in our modern sense enters the scene via the Samaritan tradition in medicine. It is known that St.Luke was a physician and there is some evidence that the good Samaritan was meant to be a physician - certainly he treats the man fallen by the way side with an infundation of oil and wine, which was a remedy for wounds in Greek medicine. However that may be, the ideal of the good Samaritan who ministers to the sick despite inconvenience and danger to himself was one which enormously affected the tradition of medicine, and it gave us the ideal of beneficence in something like its modern form.
Yet not completely like its form in modern medicine, for another current entered ethics via the Order of Knights Hospitallers. This Order was found in the 11th century to provide hostels for pilgrims to the Holy Land and to care for the sick, and later those wounded at the Crusades. The members of this Order were mainly of noble families and were deducated to serve 'our lords, the sick'. This tradition continued in the religious orders, and it emerged in a different form in the 18th century when the status and education of doctors began once again to improve, and the image of the g entleman-physician began to re-appear. The opening words of the influential book of medical ethics, written by the British physician Thomas Percival (1803), bear witness in elegant language to the ethic of noblesse oblige:
'Physicians and surgeons should minister to the sick, reflecting that the ease,
health and lives of those committed to their charge depend on their skills,
attention and fidelity. They should study, in their deportment, so to unite
tenderness with steadiness, and condescension with authority, as to inspire the
minds of their patients with gratitude, respect and confidence.'
These words echo the sentiments of the Knights Hospitallers of the Crusades, and they were incorporated into the Code of Ethics of the American Medical Association and stood unchanged from 1847 to 1912; their spirit lived long after that.
To sum this up, we can say that all doctors would nowadays subscribe to the ethical idea that they have duties not to harm and to do good to their patients, but they may be unaware of the fact that the medical interpretation of these duties has been coloured by (at least) three traditions: the Hippocratic tradition of competent craftsmanship, the Samaritan tradition of helping one's neighbour in all circumstances, and the Knights' Hospitaller tradition of noble service.
The effects or influences of this rich ethos on modern medicine can be seen in the manner in which doctors feel obligated to develop and apply the modern version of craftsmanship, which is medical technology; to treat patients wherever they can be treated and to resist rationing; to treat patients in terms of a medical perspective on needs rather than a patients' perspective.
This rich medical ethos, which I shall call 'the main tradition', remained largely undisturbed from the Greek world to the end of the 1950s. Since then however there have been at least three attacks on it, deriving from three different sets of ideas: the emergence of nursing as an independent profession and along with that the development of a team approach to health care; the rise of patients' rights movements; and the need for rationing following the growth of demand on medical services. These movements overlap in various ways, and all are particular manifestations of broader social changes. The attack which is especially relevant to this paper derives from the patients' rights movement. The public wish to be involved in decisions which are going to affect them. This move to more openness, more consultation, has affected medicine as much as other areas of society. The concept which has been adopted to encapsulate the idea of the rights of patients is 'autonomy'. Codes of medical ethics and philosophical discussion from the 1970s increasingly added 'respect for the patient's autonomous decisions' to the duties of non-maleficence and beneficence.
Some of the dispute over advance statements can be seen as a particular form of this more general conflict which arises in medicine when the main tradition - identified by the principles of non-maleficence and beneficence - encounters the new tradition of respect for the patients autonomous decisions. I want to pursue this further by looking in more detail at the doctrine of consent, which is my second theme.
Advance statements may be thought to be extending the doctrine of consent or refusal, which is itself derived from autonomy. Now while this may be so it is important to examine the doctrine of consent more precisely, for there are at least three strands in it.
(a) The weakest sense of consent is 'agreeing to' or 'accepting'. If we take an analogy from consent in political philosophy then a ruler like Elizabeth I of England ruled by consent in that she was popular and the punters accepted or agreed with her policies of beating up the Spanish etc. But her right to act in this way did not depend on their agreement; if they had not agreed, then it would not have mattered. This is the weakest sense of consent. In medicine it might be illustrated in contexts in which the doctor says 'I am proposing to do X and Y' or
'I have just done X and Y. Is that OK?', and the patient weakly says 'Yes, thank you doctor'. This strand of the consent doctrine is compatible with the main tradition in that it does not confer rights on the patient.
(b) A strong sense of consent is 'authorising'. A might authorise B to do X, Y on his behalf. In this case Bs right to do X, Y necessarily depends on As authorisation. B is delegated to do X, Y and the main responsibility for the doing of X and Y rests with A. For example, I might instruct or authorise my agent to
bid for me at an auction. This is too strong a sense of consent to be assimilated into even a modified main tradition in medical ethics. (Although the term 'authorise' is used in the BMA Guidelines in Fig. 1, and P.21, line 2). It has the serious disadvantage in medicine of undermining professional autonomy: the doctor may feel that what I authorise is futile, and in any case it is up to him to make the treatment decisions (although, as we shall see, the patient can legitimately refuse treatment).
It should be noted that the use of the term 'directive' may encourage patients to see themselves as authorising their doctor to act as their agent. This has already happened in the USA. In a study of the literature Paris et. al. (1993) note that doctors will almost always continue treatment if requested by patients or relatives even if they regard it as futile. They do this because they believe that patient autonomy carries with it the right to whatever treatment the patient requests. Moreover, this view is supported by many US ethicists. For example, Veatch and Spicer (1992) maintain that a physician is obliged to supply requested treatment even if the request 'deviates intolerably' from established standards or is in terms of the doctor's judgement 'grossly inappropriate'.
In reply to the US position we must remember that the principle of respect for autonomy applies not only to the patient but to the doctor, and if in the doctor's professional opinion the requested treatment is 'grossly inappropriate' then the doctor has no duty to provide it; indeed he/she has a duty not to provide it. The position has in fact been supported in the UK by the Court of Appeal. In a case in which a physician had indicated that he would not concur with a family's request to give a dying patient ventilatory treatment if that became necessary to sustain the patient's life, Lord Justice Donaldson stated that 'courts should not require a medical practitioner...to adopt a course of treatment which in the bona fide clinical judgement of the practitioner was contraindicated.' Lord Justice Balcome went further and wrote that he 'could conceive of no situation where it would be proper to order a doctor to treat a patient in a manner contrary to his or her clinical judgement'. In other words, the Court of Appeal, is here supporting the professional autonomy of the doctor (Re J (a minor)1992).
But whatever the legal situation in the UK there are 3 points to be made (a) that the American writers of this article dismiss the judgments of the Court of Appeal as expressing English social class interests - where the lawyers support the doctors. They predict that this will change. (b) It is in fact the case that many doctors, and many more nurses, believe that they are obliged to do what the patients and relatives request especially at the end of life. (c) The Patient's Charter encourages this, what we may term 'consumer' autonomy, approach to medicine.
Contrary to our US colleagues there is good reason for maintaining the asymmetry whereby the patient may legitimately refuse a treatment or authorise a refusal, but cannot authorise, as distinct from agree to, the positive giving of a treatment. The explanation is that the doctor is the expert on the patient's medical good - hence only the doctor can authorise treatment - but the patient is the expert on his/her own total good. In the light of this knowledge of an overall or total good, the patient is entitled to refuse treatment which might well be in his/her narrower medical good.
One upshot of this is that the BMA must be careful about terminology. There are 2 points.
(1) They use the term 'advance directive' to mean 'advance refusal', and I wonder if it might not be better to stick with 'advance refusal' if that is what is meant, since the term 'directive' sounds a wider one and might suggest that it is possible in a document to direct or authorise a positive treatment. (2) There is moreover a logical inconsistency in the BMA dcoument. In the definitions (para. 2) advance directives or refusals are made a subset of advance statements, whereas in the summary (para. 14) there is a contrast implied between advance statements in 14.1, and advance directives or refusals in 14.2. This suggest that there are two different categories involved. I prefer the second approach - in which statements of preference or requests are contrasted with refusals - but the terminology must be clear and consistent.
I said that the doctrine of consent contains three strands - the weak idea of agreeing to or accepting what has been proposed, and the strong idea of authorising . The third strand is that of:
(c) Shared decision making.
Shared decision-making has two elements:
(i) Patient preferences and values are discussed by the doctor in the light of the doctor's treatment proposals or they could be mentioned in advance in a document. This type of discussion is necessary but not sufficient for what I am calling joint or shared decision-making.
(ii) The second necessary condition is that this discussion results in the activating of a socially or often a legally sanctioned procedure. We can call this procedure the giving or the refusing of permission. These two conditions are together necessary and sufficient for this sense of consent. I should like you to note some points about it.
(a) Permission is given by both patient and doctor. Each may permit the treatment or not.
(b) Permission is a normative term. It is not like 'agreeing' or 'accepting' which are non-normative - I can accept a drink or agree to go to the cinema without any question of rights. But to give permission is to confer a right. Thus the patient gives or refuses the doctor a right to intervene, and the doctor gives the patient a right to have or not have the treatment in question.
(c) The norms in question must be socially and in the end legally sanctioned or legitimised by public policy. In other words, the parties must know and agree about procedures, and society more generally must know and agree.
Now if we apply the doctrine of permission, thus explained, to advance statement of preferences or advance refusals we have a doctrine which enables us to accept the merits of the new patients rights movement without abandoning the main tradition.
The patient can be protected against paternalistic decisions deriving from doctors' or relatives views of their total good. They can be protected because they can refuse permission through socially and/or legally sanctioned procedures. On the other hand, the doctor's professional autonomy is also respected in that he too is giving permission through socially sanctioned procedures. Moreover, responsibility is shared. In the first strand of the consent doctrine - agreeing or accepting - the main responsibility remains with the doctor. In the second - authorising - the main responsibility rests with the authoriser. But in the third the responsibility is shared by (a) the patient (b) the doctor (c) society which has sanctioned the procedures through its public policy.
3. Continuing Power of Attorney
It may be argued that the doctrine of authorisation does have a place in this discussion - because if it is thought desirable to invoke the doctrine of continuing powers of attorney or proxy decision making then we do require the strong doctrine of authorisation. But I am very doubtful about this doctrine in the context of advance statements. The Law Commission (7.7) are in favour of extending the doctrine to medical matters. They consider the objection: 'that a person's choice of proxy might become out of date, that the proxy might not make the same choice as the patient would have made...' And they reply: 'Exactly the same arguments could be made against allowing people to delegate their financial powers. They appear to us to be arguments in favour of adequate safeguards rather than arguments against the extension of the popular E.P.A. (Enduring Power of Attorney) scheme to personal and medical matters.' Well, I am not so sanguine as the Law Commission. The crucial difference is that in financial matters the proxy is acting in ways what are for the perceived good of the donor, whereas in medical matters a decision may be required which leads to the death of the donor. Many proxies will not have the stomach for that kind of decision. In 7.10 the Law Commission recommends 'that an attorney acting under a CPA should act in the best interests of the donor, having regard to statutory factors.' To which I shall say 'Yes, provided we also agree that death can be in a person's best interests'.
There is in fact some empirical evidence from the USA that, when it comes to the bit, the attorney - often a guilt-ridden relative - will say: 'Do everything possible.' Whereas proxies may have a place in decision-making - say in the context of incapacity where there is no advance statement - I maintain that people should make up their own minds and embody their will in socially sanctioned documents.
4. Some Objections
There are several common ethical objections to advance statements. All of them can be answered.
1. Patients do not really want to discuss future incompetence and death, and so would rather not discuss advance statements. In reply we can say that many people do want to make arrangements for their possible future incapacity, and no one is obliged to do so.
2. Discussion of advance statements takes too much time and requires special training and competence. In reply it can be noted that as advance statements become more familiar less time will be required. Forms with helpful advice can give guidance.
3. The incompetent patient's best interests should take precedence over even the most thoughtful choices of a patient while competent. The reply is that it is essential that competent patients who record their wishes know these wishes will be followed later, a person's values and choices should govern even after loss of competence because he or she remains essentially the same person, and to recognize the proposed exception would invite widespread disregard of treatment directives.
Jonsen, A.R. (1990). The New Medicine and the Old Ethics, Harvard University Press, Cambridge, Mass.
Paris, J.J. et.al. (1993). Sounding Board. New England Journal of Medicine, 329, 5, 354-7.
Percival, Thomas (1803). Medical Ethics, (ed. Chauncey Leake 1976).P.71 Krieger, New York.
Re J. (a minor) (1992). 4 All England Law Reports, 614.
Veatch, R.M. and Spicer, C.M. (1992). Medically futile care : the role of the physician in setting limits. American Journal of Law and Medicine, 18, 15-36.
©: 1995 Robin Downie
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