Healthcare Training Institute - Quality Education since 1979
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The Distinction Between Passive Euthanasia And Competent Refusal Of Life-Prolonging Therapy: The moral difference between passive euthanasia and competent refusal of therapy lies in who makes the final decision. Euthanasia is something which one person gives to another -- whether or not it is voluntary. Withdrawing from therapy is something which one does to, or for, oneself. Respecting autonomy means that we bound to take our own moral decisions and others are bound not to interfere; but it also means that we are responsible for the decisions which we make. There is, then, a strong sense in which clinicians are responsible for decisions to give euthanasia, and patients are responsible for decisions which they make to withdraw from therapy.
Of course, we might want to argue that it is irrational to put religious beliefs before life itself -- particularly when the religious belief is based on a literal interpretation of the bible. We might argue that it is irrational to prefer to save the life of an unborn child to one's own, particularly if the unborn child may die anyway as a result of one's own death. We might argue that it is irrational to give up one's own chance of life when one has no control over where the resources will be spent instead. We might argue that it is irrational to perceive oneself as a burden to relatives because burdensomeness is in the eye of the beholder. But we should be wary of confusing irrational reasons with reasons with which we simply do not agree. Furthermore, we should be wary of confusing either irrationality or strong disagreement with incompetence. When determining incompetence, we could do worse than adopt the so-called Re C test outlined by J. Thorpe: competence requires '... first comprehending and retaining treatment information, secondly believing it and thirdly, weighing it in a balance to arrive at a choice'. Clearly, applying this test might be difficult -- for instance, perhaps the patient is right to be skeptical about the information which is given by a clinician under some circumstances -- but the test itself seems reasonable.
To summarize, a competent decision to refuse therapy can be made on rational or irrational grounds, or even no grounds at all. A request for voluntary, passive euthanasia, however, must, in addition to being competent, be rational to the extent that the doctor concerned can be persuaded to become party to the decision. But the doctor can also refuse to be party to the decision not because it is an incompetent one, nor because it is an irrational one, but because he disagrees that euthanasia is the appropriate clinical or moral option under the circumstances. At least two things follow from this distinction. The first is that patients who might otherwise request passive euthanasia could instead refuse of all therapy necessary to sustain or save life. If food is considered to be a therapy, then no competent patient is without the means to end her life since she simply has to refuse to eat and decline her consent to tube feeding. The advantage of so doing is that it is not necessary for the patient to make the clinician an accomplice to her decision. This does not mean that she has to conceal her desire for death from her clinician -- indeed, this desire is likely to be discussed when any patient makes such a request. Rather it means that the patient remains in control, since it is her decision, rather than that of her clinician, which is the decisive one. The second is that since it is already legal for competent patients to refuse therapy, there is no need, in addition, to legalize voluntary, passive euthanasia in order to give patients autonomy over their own bodies. Both these arguments may meet some of the ethical problems with euthanasia previously outlined.
Anorexia Nervosa And The Decision To Refuse Food: The condition which challenges these distinctions is anorexia nervosa where food is refused because the patient is completely obsessed with the idea of weight loss, or maintaining weight at a level incompatible with active life or even any life at all. Here the lack of distinction between providing food and therapy is even more marked because nutrition is very definitely part of the therapy required to restore the anorexic to 'health'. Inverted commas around health are necessary here because anorexia nervosa is commonly, but often uncomfortably, described as an illness --a mental illness. The ambivalence with which this categorization is viewed by treating clinicians is very evident in Crisp's textbook Anorexia Nervosa: Let me be. Crisp widely recognized as an international expert on eating disorders -- claims in the first chapter that in his opinion the condition is an illness. His theory is that anorexia is a psychological adaptive stance operating through biological mechanisms, as the sufferer tries either to avoid puberty or return to a pre-pubescent state. Nevertheless, he almost invariably puts 'illness' in inverted commas when referring to anorexia and frequently compares it to alcoholism, another state that is only uncomfortably described as an illness. The anorexic's determination to starve in the face of abundance is essentially seen as irrational -- what ever psychological theory is used to explain this behavior. As has already been indicated, whether it is a sufficiently irrational obsession to be categorized as a mental illness cannot be taken for granted, but even if it is, it is far from obvious that simply being classed as suffering from a mental illness is necessarily an indication that one is an incompetent individual. Nor is it obvious that anorexics refusing therapy are sufficiently irrational to be classed as incompetent to make decisions regarding their food intake.
There are two justifications for associating irrationality with incompetence in the case of anorexia. One is that the desire not to eat undermines an even stronger desire not to die. Another is that the desire not to eat might itself be an involuntary one, grounded in some other deeply held, but false, belief about their body image -- usually that they are 'fat'. It is interesting that although the irrational nature of their beliefs is often cited (alongside the desire to prevent them from dying) as a reason to overrule their refusal of food, working with this irrational belief is also perceived to be a valuable clinical option. For instance, Crisp writes: '... a statement that he (the therapist) agrees that the patient is probably better off, all things considered, remaining anorexic, can be the most helpful and often totally new experience for the anorexic. She can approach the task of limited weight gain with much more confidence under such circumstances.'
This suggests that therapists are prepared to work within the anorexic's frame of reference, provided that the anorexic is making decisions, which are life-promoting rather than decisions that are likely to result in her death. Of course, it is rational for the therapist to do this because it achieves his aim of preventing his patient's death. This does not, however, make the anorexic's beliefs any more rational. Accordingly, either the relationship is still one of the clinician's proxy determination of the best therapy for his patient (her wishes just happen to coincide with the therapy he has chosen for her); or, if the patient is considered to be competent to decide for herself, she is only as competent as she was when she decided to refuse food -- which makes any previous decision to over-ride her wishes and force-feed her highly paternalistic and even a battery, however well motivated. There is always a danger in clinical relationships that competence is more likely to be questioned when the patient disagrees with the judgment of the clinician. This questioning itself highlights the ease with which assessments about a patient's competence can be muddied by disagreements over the relative value of deep-seated beliefs.
It is at this point that the clinical management of eating disorders begins to challenge the established view that competent refusals of consent must be respected. Let us return to one example and introduce yet another. Earlier, the point was made that it would be deemed unacceptable for clinicians to forcibly prevent from eating those whose over-eating was life-threatening. One reason for this is that over-eating is not considered to be a mental disorder. Yet, neither is the vast majority of under-eating -- namely that which is done for the sake of current fashion and in conformity with current trends about body image and healthy living. Anorexia nervosa differs from this kind of under-eating in two important respects. First, the diagnosis is usually only made once the under-eating threatens life and health. Second, it is believed that the compulsion not to eat is somehow involuntary or beyond the control of the sufferer. If this is the case, then there are good grounds for supposing that in regard to eating, sufferers from anorexia are not competent. There is no one, universal explanation for this disorder but it is often associated with other psychological problems such as low self-esteem, a sense of having no control over one's lives, or a history of sexual abuse. But the same could be said of at least some of those who over-eat, and if this over-eating puts their lives in jeopardy perhaps compulsory therapy could also be ordered in these cases too. A reluctance to extend still further the influence of psychiatry into eating habits is understandable. But does the unwillingness to section patients who endanger their lives through over-eating owe more to moral disapproval of gluttony than it does to an absence of evidence that people who are over-weight also have psychological problems which can account for their eating disorders? If so, then it is the conflict of relative values which accounts for how competence to control eating is assessed rather than the extent to which the activity is self-harming or involuntary. The second example concerns those women who refuse to undergo radical breast surgery when they are diagnosed with breast cancer, because they consider that their breasts are so integral to their identity and/or quality of life that they would rather die with their breasts intact, than live without them. This is a view that attracts a great deal of sympathy, despite the fact that it seems irrational to give greater weight to one's body image than to one's life expectancy. But provided that she is competent and understands the dangers of refusing to consent, such a patient would never be compelled to undergo surgery. In this case, competence and irrationality are clearly differentiated.
But what of the sufferer from anorexia who refuses therapy, not because she thinks that her condition is not life-threatening, nor because she refuses to accept that she has a problem at all, but because for her too the burden of therapy and the side-effects of successful therapy -- in terms of the body with which she will be left -- are such that she prefers to take her chances with death? Such a sufferer would not be a typical case (any more than a woman who refuses surgery for breast cancer is would). However, what we need to be mindful of at this point is that some sufferers from anorexia nervosa are never cured, not even to the extent that they are able to live with their disorder by maintaining an abnormally low but constant, life-sustaining body weight. Granted that the received wisdom is that of an illness with a natural cycle of anywhere between one and eight years, under discussion here someone who has endured a decade or more of repeated painful weight loss and traumatic weight gain. The stress of living with anorexia nervosa prompted Crisp to write: (m)any anorexics feel constantly like alcoholics, that they are just one step away from disaster. When suicide occurs it is often within this context. The individual is seeking relief from the endless terror and the exhaustion of a battle to maintain her position.
It is possible that some of those who over-eat do not do so voluntarily, over-eating could be a symptom of an under-lying mental disorder. If so, then if preventing over-eating extends life long enough for this mental disorder to be treated effectively, forcible prevention may be justified and we are doing an injustice to sufferers when we do not take this possibility into account. Equally, some refusals of consent by suffers from anorexia may actually be voluntary. It was noted earlier that many sufferers are not broadly incompetent. Granted that broad competence is intact, we should be open to the possibility that sufferers are actually as competent as anyone else to make decisions about the quality of their lives, and to assess the relative value of their lives in the light of its quality. For this reason, it is proposed that it may be wrong, as well as unlawful, to force patients to comply with therapy simply because they are anorexic.
It is undoubtedly awful to watch someone -- possibly a young someone --die when they can so easily be saved. However, if justice is to be given to those sufferers who can neither live with their anorexia nor live without it, we must listen carefully to their refusals of therapy. The first step on this road is to accept that at least some sufferers from anorexia may be competent to refuse therapy -- even if this is only a tiny minority. To do this we will have to listen to the reasons that they give for their refusal, not to determine whether or not these reasons are rational per se, but to hear whether these reasons reflect the burden that life with anorexia and therapy has become. We need to bear in mind that there is a difference between saving the life of a sufferer and curing them of their anorexia. Whilst feeding may be life-saving, it does nothing for the underlying condition indeed it may even worsen it. Accordingly, we may also have to be open to the possibility that some sufferers from anorexia will never be cured, and that offering palliative care in such cases should not be dismissed as collusion with a mental illness. Rather it should be see as offering the same services to incurable anorexics as are available to others who cannot be cured.
There is a wider danger in rejecting the possibility that some refusals of therapy by sufferers from anorexia are actually about quality of life and not involuntary refusals of food. This danger is that of weakening of the distinction between passive euthanasia and competent refusal of life saving therapy. If we exclude the possibility of a competent refusal being made for reasons which we cannot endorse -- which I am suggesting may be happening in a minority of anorexia cases -- there is a danger that a refusal of life-prolonging therapy will need to become as convincing to a physician as a request for passive euthanasia needs to be. Respecting a patient's autonomy is not simply about letting her make some decisions, or even all decisions. It is also about accepting that it is the patient who is responsible for the consequences of her decisions, and not the person who records this refusal of consent in the patient's medical notes.
Reflection Exercise #5