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Bioethics

Lessons (Not) Learned

Robert Card on the ethics of medical care at the end of life.

It is natural for humans to want control over their own lives. Since death is an inevitable part of being human, it is also understandable that people want control over the circumstances of their own death, if at all possible. As the field of medicine advances, more people face a choice about the length of their own life, and perhaps the lives of their loved ones. The recent case of Terri Schiavo in the United States has created an upsurge of interest in the foundational questions surrounding the ethics of end of life medical care. Schiavo, a severely brain-damaged woman who became dependent on a feeding tube when her heart stopped beating due to an eating disorder, became internationally known because of legal battles fought by her husband in order to have her feeding tube removed. In what follows, I will discuss a few of the main ethical questions in order to illustrate how important philosophical considerations are being needlessly overlooked in policies concerning the morality surrounding continuing or terminating end of life care.

‘Passive’ Euthanasia and Autonomy

‘Euthanasia,’ translated literally, means ‘good death.’ A familiar distinction is that between ‘passive’ euthanasia and ‘active’ euthanasia. Roughly, ‘passive’ euthanasia occurs when medical treatment is withheld or withdrawn (e.g. removal of a feeding tube), thereby allowing a patient to die from an underlying medical condition sooner than otherwise would occur. ‘Active’ euthanasia occurs when a medical agent (such as an overdose of a barbiturate) is administered to a person, thereby hastening his or her death. The intuitive idea behind this distinction is that of letting the natural flow of events happen by no longer impeding them, versus ‘actively’ intervening in the natural course of events. This rough and ready statement does not capture the matter with precision, of course, since to no longer impede the progress of a disease by withdrawing medical treatment is also a form of intervention. Yet for many people, this intuitive idea grounds the moral acceptability of passive euthanasia in at least some cases since this is thought to not constitute a form of killing – it is the disease that is the cause of death. By contrast on this view active euthanasia is not morally acceptable, since this amounts to medical professionals killing patients.

This perspective is subject to the criticism that both active and passive euthanasia are forms of killing. If an instance of active euthanasia represents a killing since this is the intentional termination of a life, then the same applies to withholding or withdrawing medical care based on a patient’s wishes (assuming that the hastening of the patient’s death is reasonably held to be intended). From a moral point of view, acts of omission can be viewed in the same light as acts of commission. One can be blamed for harming one’s child by hitting her (child abuse) just as one can be blamed for harming her by failing to feed or take care of her (child neglect). This child example aims only to make a modest claim of parallelism between acts of omission and commission: in our discussion of euthanasia itself we will assume that the case involves an adult with a terminal illness who wishes for one of the necessary acts to occur.

Interestingly, the parallelism just noted can be used to argue in support of the moral acceptability of both passive and active euthanasia, or against the moral acceptability of both. While many bioethicists adopt the former stance (even if for other reasons they reject active euthanasia as unacceptable), regular folks such as Robert Schindler, the father of Terri Schiavo, have the latter take on the argument. In response to the refusal of high courts to block the withdrawal of medical treatment for Schiavo, Mr Schindler said in one news report, “It’s judicial homicide. They want to murder her...” (Holland; Associated Press, January 25, 2005). In opposition to this view however, it should be noted that intentional killing can be judicially and morally justifiable. What could make passive euthanasia justifiable?

In the United States, the Supreme Court dealt with this issue in Cruzan v. Director, Missouri Department of Health (1990). This was a case involving a young woman who was in a persistent vegetative state as a result of an automobile accident. Two main arguments were presented. The first argument was based on informed consent. People have bodily integrity, and therefore must agree to all uses to which their body is put (even touching a person without his or her consent can constitute battery). This undergirds the idea of informed consent, a central notion in medical ethics. It follows from this as a logical corollary that if people must give informed consent to be medically treated, then people also have the right to refuse to consent. So if we accept the tenet of informed consent, then we must accept the right to refuse to consent, and hence the right to refuse treatment, including the refusal of nutrition and hydration. This is the case since inserting a feeding tube that delivers nutrition and hydration is a form of medical treatment. Once consent is refused or withdrawn, continued treatment constitutes medical care administered against a person’s will.

The second argument is based on a notion of privacy. People have the right to make decisions about intimate aspects of their lives: these liberty rights extend to decisions regarding, for example, the use of birth control as well as the timing and circumstances of one’s death. The Supreme Court concluded that competent people have a right to refuse medical treatment, while decisions affecting end of life care made by a proxy regarding incompetent patients must meet a standard of ‘clear and convincing’ evidence. The guiding justification is to do what the patient wants, or to do what we have reason to believe the patient would want to have happen in this instance.

This judicial basis mirrors a philosophical foundation for passive euthanasia founded on the importance of autonomy. This provides a strong basis for a right on the part of competent people to assume control over their dying process. Those who oppose even passive euthanasia present several counter-considerations. In a case in which a proxy speaks for a presently incompetent patient, opponents argue that there is a conflict of interest that may lead to unnecessarily hastening the death of the patient. This charge was leveled against Michael Schiavo in his ultimately successful battle to have his wife’s feeding tube removed; it was said that he considered his wife to be a burden and that he wished to inherit her estate. It is difficult to assign much weight to such charges, without substantial evidence that the proxy has illicit motives. After all, in almost any case of a terminally ill patient, the proxy chosen or designated to speak on behalf of the patient is someone who knows the patient well, and therefore is likely to have just such a potential conflict of interest. Contrarily, it is precisely this bond that leads us to believe that this person will be a good proxy.

We can imagine a more sophisticated opponent who argues that the desires of a presently incompetent patient are unknowable. Even in a case in which a person has a living will or an advance directive, it could be argued in most cases that the applicability of the document to the person’s situation is not entirely clear. This may provide a sound reason to opt for preserving the patient’s life instead of terminating treatment. Advance directives typically either specify a proxy (and hence are subject to the objections discussed above) or focus on medical procedures the person does not wish to have performed. The latter raises a problem since medical procedures can change, both in substance and in their efficacy, and hence such advance directives can easily become outdated. There are also theoretical and factual reasons to believe that people’ wishes are not adequately represented in advance directives. Medical thinker Christopher James Ryan argues that healthy people underestimate their desire to live. He discusses studies which suggest that when people have a serious illness they are more likely to request medical intervention than would be predicted from their preferences stated in advance directives. Ryan also points out that the suicide rate for terminal patients is highest the year after the diagnosis is given. He thinks the subsequently decreased rates of suicide after the first year supports the idea that people come to value living more than they believed they would when they were in a healthy condition. For these reasons, Ryan suggests that people should only enter into advance directives after being diagnosed with a terminal illness. While he is opposed to most advance directives, he supports utilizing them if the person has irreversibly lost competence.

This argument clearly identifies a genuine concern, that of the epistemic difficulty faced by a person making choices for a future unhealthy self. However, this argument unreasonably narrows the window for the acceptable use of advance directives. According to Ryan, one should not enter into a proper advance directive when healthy, nor for the first year after the diagnosis, since one might be suffering from clinical depression. Unfortunately if a person’s condition deteriorates in the year following the initial diagnosis, the person may become incompetent due to the progression of the disease or for other reasons, for instance, the use of pain medications. This would allow only a small percentage of advance directives to be formulated and respected, and hence restricts autonomy too greatly.

Active Euthanasia versus Passive Euthanasia

Philosopher James Rachels argues in a famous paper that this parallelism suggests there is no intrinsic moral distinction between active and passive euthanasia. Rachels’ 1975 paper targets the American Medical Association’s (AMA) policy on end of life care, which supports what we might call the Traditional View. The Traditional View, for reasons discussed above, holds that passive euthanasia can be acceptable in some cases, while active euthanasia is never acceptable.

Rachels first argues that the Traditional View leads to decisions being made on irrelevant grounds. To illustrate his point, he presents a case of a baby with Down’s Syndrome born with a congenital defect such as an intestinal blockage. In some cases, parents decide not to authorize the surgery to address the intestinal blockage. The Traditional View, it seems, can be utilized to support this position since the baby in this scenario is simply ‘allowed to die’ via dehydration/starvation, ie by not intervening in the natural course of events. Rachels argues that this line of reasoning is unsupportable: “If the life of such an infant is worth preserving, what does it matter if it needs a simple operation? Or, if one thinks it better that such a baby should not live on, what difference does it make that it happens to have an unobstructed intestinal tract?” Rachels’ point is that the Traditional View focuses on the wrong thing by allowing a rationalization of the parents’ decision based on the arbitrary and irrelevant factor that the baby’s intestines are blocked.

Secondly, Rachels argues that killing is not in itself morally worse than letting die, contrary to the Traditional View. To vividly support this point, Rachels presents the clever case of Smith and Jones. Smith will gain a large inheritance if his six-year-old cousin dies, so he secretly drowns the child during his bath and makes this look like an accident. Jones’ case is exactly the same, and he too plans to drown his young cousin in order to receive an inheritance. When Jones sneaks in during the child’s bath, he sees the child slip and hit his head, thereby falling face down in the water. Jones is elated by this event, and while he is ready to push the child’s head back under the water if necessary, the child drowns all by himself. In these cases, both Smith and Jones have the same intention and the same outcome occurs. Rachels’ contention is that both Smith and Jones are equally morally culpable with respect to the child’s death. The only difference is that Smith ‘kills’ while Jones ‘lets die’ by merely watching the child drown. Since everything else is the same, if we do not have a different moral reaction to the two cases we can conclude that the bald distinction between ‘killing’ and ‘letting die’ does not make an intrinsic moral difference, contrary to the Traditional View. Hence the distinction between active and passive euthanasia should not be given authority when thinking critically about policies regarding the termination of end of life medical care.

Lessons Not Learned

Although philosophers have made substantial contributions to the ethical dialogue regarding end of life care, this input has not received adequate attention in the framing of medical policies. Although what I argue in this section is not uncontroversial, there are few interesting things one can say in philosophy which aren’t controversial.

Since the AMA’s policies are the target of Rachels’ seminal arguments, a review of their present-day policies will serve as an example of the lessons the medical community has not learned from philosophers. Today the AMA has several policies which address the morality of terminating medical treatment. The following is the first paragraph of the AMA’s most general policy addressing the morality of end of life care (E-2.20):

“The social commitment of the physician is to sustain life and relieve suffering. Where the performance of one duty conflicts with the other, the preferences of the patient should prevail. The principle of patient autonomy requires that physicians respect the decision to forego life-sustaining treatment of a patient who possesses decision-making capacity. Life-sustaining treatment is any treatment that serves to prolong life without reversing the underlying medical condition. Life-sustaining treatment may include, but is not limited to, mechanical ventilation, renal dialysis, chemotherapy, antibiotics, and artificial nutrition and hydration.”
(E2.20: Withholding or Withdrawing Life-Sustaining Medical Treatment)

A discussion of two cases illustrates how this policy may be implemented in practice.

Case 1: An end-stage AIDS patient with pneumonia (pneumonocystis carinii) refuses a course of antibiotics offered by his physician.

One might reasonably think that since in this case the antibiotic treatment does not reverse the underlying medical condition (i.e. AIDS), this constitutes life-sustaining treatment according to the AMA’s policy E-2.20 above. Hence, it is ethically acceptable to withhold treatment since the principle of patient autonomy requires that physicians respect the decision to forego life-sustaining treatment.

Case 2: A patient with terminal lung cancer refuses renal dialysis since she no longer wishes to live. While she has had dialysis for several years, she now no longer consents to this medical treatment.

In Case 2, is it ethically permissible for the physician to honor the patient’s request? The answer again is presumably “Yes”. The reasoning supporting this determination is quite straightforward: since dialysis does not address the underlying medical condition (ie terminal lung cancer), renal dialysis constitutes life-sustaining medical treatment for this patient. Since patients have a right stemming from autonomy to refuse life-sustaining treatment, this patient should have her request honored according to E-2.20.

The reasoning presented above is deceptive, since things are not as simple as they are made to appear by the AMA’s policy. The question raised by these cases is “What counts as an ‘underlying medical condition’ in E-2.20?” Even if failure of the kidneys to filter wastes from blood is considered the relevant medical condition in Case 2, since hemodialysis addresses this condition but cannot be said to reverse it, dialysis constitutes life-sustaining treatment and (according to E-2.20) it is ethically acceptable to honor the patient’s refusal of care. By contrast, if pneumonia is considered the underlying medical condition in Case 1, then since a course of antibiotics can reverse this condition, antibiotics are not considered a life-sustaining treatment, and the patient’s refusal may not be honored according to the AMA’s policy. What initially seem to be relatively straightforward cases given the AMA’s policy are much less clear upon examination.

The upshot of this is that while it may seem reasonable to honor a patient’s request based on a respect for autonomy, the medical policy under discussion cannot provide a clear basis for this position. The policy provides us with no resources for determining what constitutes an ‘underlying medical condition’ in a particular case – yet this determination can make all the difference regarding whether or not the patient’s refusal of care is to be honored. The problem is that the determination of what constitutes an ‘underlying medical condition’ is essentially arbitrary; this means that the determination is not based on factors that are morally relevant to the decision at hand. This point is analogous to Rachels’ first argument discussed above. The decision as to whether to honor the patient’s request should not be based on a physician’s selection of one possible ‘underlying medical condition’ over another. The focus should instead be squarely on the patient’s expressed wishes as embodied in his or her values, since this implicates patient autonomy. The above policy, by ignoring the relevant underlying philosophical presuppositions, gives physicians unrestricted discretion while failing to provide substantive guidance on the central moral issue.

The viability of this policy on end of life care is not only infected with arbitrariness, but it also implicitly assumes that physicians who agree to withdraw or withhold life-sustaining medical treatment are less morally culpable than if they utilized more active means to hasten death. This mistaken assumption is akin to the flaw highlighted by Rachels in his second argument. My hypothesis is that the focus on the ‘underlying medical condition’ represents a failed attempt to minimize physicians’ accountability in the causal sequence leading to a patient’s death in cases in which patients refuse treatment. It is worth noting that Policy E-2.20 makes no mention of ‘euthanasia,’ although this policy deals with what would clearly qualify as ‘passive euthanasia’ on the Traditional View. The AMA has a separate policy entitled ‘Euthanasia’ (E-2.21) which states in part: “Euthanasia is the administration of a lethal agent by another person to a patient for the purpose of relieving the patient’s intolerable and incurable suffering.” This policy deals with more ‘active’ means of hastening death than the withholding or withdrawing of medical treatment discussed in the earlier policy. Since “euthanasia is fundamentally incompatible with the physician’s role as a healer,” the AMA is opposed to honoring patient requests for (active) euthanasia. Of particular interest, this policy notes that “The physician who performs euthanasia assumes unique responsibility for the act of ending the patient’s life.”

Comparison of these two policies suggests a line of reason-ing distinguishing requests for ‘withholding/withdrawing life-sustaining medical care’ and requests for ‘euthanasia’: if a physician cannot reverse the underlying medical condition by providing medical treatment, then the underlying medical condition is the cause of death, while in cases of ‘euthanasia’ the physician is the cause of death. This line of argument, while understandable, is misguided. The underlying medical condition is certainly not always the sole cause of death. The physician who accedes to the patient’s request in Case 1 (AIDS/pneumonia) is causally implicated in the death of this patient, although he or she is not morally culpable if certain conditions are met (for instance, if the patient’s decision was voluntary, the patient was competent to make the decision, etc.). Further, it is not obvious that in Case 1 the underlying medical condition is the cause of death in any clear sense. Recall the puzzles discussed above regarding the specification of the ‘underlying medical condition.’ One might be tempted to say that AIDS is the underlying medical condition in Case 1, thereby allowing that this patient’s request to forgo life-sustaining treatment should be honored and hence that AIDS is the cause of death. However, patients do not die of AIDS, but instead of particular opportunistic infections. Strictly speaking, AIDS does not cause a particular individual to get pneumonia although it is true that but for AIDS, the individual would not have pneumocystis carinii. These policies reflect a theme that philosophical bioethicists have powerfully (and rightfully) attacked. Using less versus more active means of terminating life does not change the fact that a killing occurs and that a medical professional is causally implicated in the death of a patient. However, if certain conditions are satisfied, as discussed above, such killing can be morally justified. To ignore or obfuscate these lessons drawn from bioethics is an inexcusable act of willful ignorance.

Robert F. Card is Associate Professor in the philosophy department at State University of New York, Oswego. Among his publications is Critically Thinking About Medical Ethics (Prentice Hall, 2004).

• The American Medical Association’s policy documents can be found on its website at www.ama-assn.org