oxford handbook of bioethics

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advance directives are much more common in the United States (and first developed there), my legal points are drawn from American law, but the ethical issues are universal.

Living wills. People use living wills to say how they want to be treated if they later become incompetent. Some living wills are informal documents circulated by religious or right-to-die groups. For example, the one circulated by Concern for Dying, a large right-to-die organization, directs that ‘I be allowed to die and not be kept alive by medications, artificial means or ‘‘heroic measures’’ ’, with spaces to fill in more information. Other living wills use boilerplate language set forth in statutes, and require more detail about what treatments the patient wants under what circumstances. Within the last twenty-five years, virtually all American states extended legal recognition to living wills, and they are beginning to get legal recognition in Germany, Japan, and Great Britain (Sass et al. 1998), among other countries. In most American states, living wills become effective immediately upon execution, can be revoked so long as the patient is capable of communicating a revocation, and typically apply in cases of ‘terminal illness’.5 In some states they apply only to life support, and in some states they do not apply to nutrition and hydration.6

Surrogates appointed under a health care power of attorney. People use a health care power of attorney to select someone to make decisions for them during later incompetence. That person may be called an ‘agent’, ‘proxy’, or ‘surrogate decision maker’. The scope of the surrogate’s powers can be as broad or narrow as the person executing the power of attorney likes. A health care power of attorney is often combined with a living will.

Surrogates appointed without a power of attorney. Surrogates can also be appointed without a health care power of attorney or living will, for many states have ‘family consent’ statutes, which specify a relative or relatives to act as surrogate decision maker. Although these surrogates are not appointed under advance directives, their role is much the same as surrogates appointed under a health care power of attorney.

Surrogate decision making. Although American law varies on this point, in general the surrogate decision maker must decide according to the substituted judgment principle, which tells the surrogate to decide as the patient would if he or she were now competent.7 Evidence of what the patient would want can consist of

medical decision making, for they enable patients to commit themselves voluntarily to psychiatric treatment for their next psychotic episode.

5 There may now be a movement toward authorizing living wills for less severe conditions. In any case, as discussed below, health care powers of attorney tend not to be so limited in scope.

6 Furrow et al. (2000: 840 – 59) provides an excellent overview of American law concerning living wills, health care powers of attorney, and surrogate decision making.

7 Some state courts have restricted substituted judgment to ‘clear and convincing’ evidence of what the patient would want, usually in the form of very clear, specific past statements about future medical care, effectively making substituted judgment impossible in many cases.

informal statements or comments made earlier, such as remarks to friends and relatives that he ‘never wanted to be kept alive as a human vegetable’ and similar comments. Such comments may not rise to the level of an actual decision, but do suggest a hypothetical decision, which the substituted judgment principle directs the surrogate to put into effect. In both law and ethics, it is generally agreed that, if there are neither express decisions nor sufficient evidence to know what the patient would decide if he or she were competent, the surrogate should protect the patient’s best interest (for respecting the patient’s autonomy is impossible).

A spectrum of autonomy. In general, this three-tiered approach to surrogate decision making — express preferences (including living wills), substituted judgment, and best interests, in that order — is endorsed both by ethicists (Buchanan and Brock 1990: 87 – 126) and by the law. Notice the order of priority: Ideally, we respect the current express preferences of a competent patient (informed consent), but if that is not possible because the patient is no longer competent, then we respect his or her past express preferences (living wills). When there are no express past preferences, then we are restricted to respecting what the patient would now want if he or she were competent (substituted judgment). When we lack even that information (or the patient was never competent), we promote his or her best interests. As we move down this list, the patient’s autonomous choices become less clear and more hypothetical. Because surrogate decision making often involves less clearly formulated autonomous choices than living wills, most of the controversy over advance directives concerns living wills, though the same issues can arise with substituted judgment as well.

Practical problems with advance directives. Living wills and (to a lesser extent) substituted judgment extend a patient’s autonomous choices into the future. This extension runs into several practical problems. It may be hard to know what medical issues the patient will later face. Many advance directives are vaguely worded, speaking in terms of ‘heroic measures’ and the like, and require interpretation. One may sign an advance directive prepared by someone else without giving it sufficient thought, or without fully appreciating what it may be like to become demented and severely incompetent. Treatment options might change between the time the directive was executed and the time it must be followed. A person’s values and treatment preferences can change over time, and advance directives are not always updated to reflect such changes. Surrogate decision makers may not be well informed about what the patient would want, or may disregard instructions in the living will or power of attorney.8

Although much bioethics literature on advance directives concerns these practical issues, I will not explore such issues or their possible solutions. Instead, I will focus

8 The SUPPORT study (‘Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments’) suggests that, despite living wills and other forms of end-of-life care planning, many patients do not get the care they want, even when concerted efforts are made to improve doctor – patient communication on this issue (SUPPORT Principal Investigators 1995).

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on the moral authority of efforts to decide one’s future treatment — however well informed, clearly stated, and legally enforceable those efforts may be. If advance directives lack moral authority, then there is no reason to focus on the practical problems, while if they have moral authority, there is all the more reason to strive to solve the problems.

3 . THE MORAL AUTHOR IT Y OF ADVANCE

DI RE C T IVES

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Practical problems aside, there are theoretical problems with extending the right of self-determination into an incompetent future. In this section we will look at the Extension View, which attempts to do just that, and review the Moral Authority Objection to that attempt.

3.1. The Extension View

According to the earliest and still standard way to characterize the moral authority of advance directives, they have the same kind of moral authority as autonomous decisions in general — just extended into the future. We can call this the ‘Extension View, for, as Buchanan and Brock explain, ‘The dominant tendency, both in recent legal doctrine and in the bioethics literature, has been to view the rights of incompetent individuals as an extension of the rights of competent individuals, through arrangements by which these rights are exercised for the incompetent by others’ (Buchanan and Brock 1990: 90; emphasis added). The Extension View was articulated in a 1983 report on advance directives by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983: 182), and later defended by Buchanan and Brock, Nancy Rhoden, and Ronald Dworkin, among others.

On the Extension View, the right of self-determination may be qualified by circumstances peculiar to advance decision making: Just as a patient’s current choice has less moral weight when the patient is uninformed about the issue in question, so the moral authority of an advance directive is weakened to the extent that the patient did not understand or foresee the medical issues that would later arise (President’s Commission 1983: 182 – 3; Buchanan and Brock 1990: 101, 105 – 7). However, while this may happen more often with advance directives than with other kinds of self-determination, that fact does not lessen their moral authority when the patient is sufficiently informed about his or her future. Buchanan and Brock appeal to the Extension View to explain the moral authority not only of living wills but of substituted judgment decision making as well (1990: 99).

Buchanan and Brock, former staff philosophers for the President’s Commission who contributed to the 1983 report, stress that advance directives are not merely evidence of what will be good for the later incompetent patient (which may be rejected when better evidence comes along), but are acts of self-determination (Buchanan and Brock 1990: 99, 116).9 Buchanan and Brock filled out the President’s Commission’s account by noting that, just as ordinary autonomy extends over the person’s own interests, so the moral authority of advance directives extends over a certain kind of interest in the future, which they call a ‘surviving interest’. For example, ‘One may have an interest in how one’s family will fare after one’s death, and that interest survives one in the sense that whether or not it is satisfied will depend upon events that occur after one is gone’ (Buchanan and Brock 1990: 100). This fits a common picture of the right of autonomy as a kind of authority over a sphere of interests — as Joel Feinberg puts it, somewhat like the sovereignty of a nation over its territory (Feinberg 1986: 47 – 51). John Stuart Mill, too, spoke of personal liberty as coextensive with ‘a sphere of action in which society, as distinguished from the individual, has, if any, only an indirect interest’ (Mill 1986: 18).

Thus, the Extension View can be stated this way: Just as we have a moral right of autonomy to effect our preferences over our interests in the present, so we have a moral right of precedent autonomy to effect (in advance) our preferences over our surviving interests (with a few caveats about the difficulty of foreseeing one’s future and anticipating all contingencies).10

3.2. The Moral Authority Objection

Critics of the Extension View are motivated in part by a well-known kind of case sometimes referred to (a bit flippantly) as the Happy Alzheimer’s Patient. In one of the earliest such cases, a 65-year-old woman was admitted for surgery to correct a clogged artery. She knew this could lead to a disabling stroke, and her living will said: ‘If . . . there is no reasonable expectation of my recovery from physical or mental disability, I request that I be allowed to die and not be kept alive by artificial means or heroic measures. I do not fear death itself as much as the indignities of deterioration, dependence, and hopeless pain’ (Eisendrath and Jonsen 1983). The day before surgery, she told her surgeon she wanted the living will followed if she had a stroke, and said ‘she felt life was worth living only if she could be healthy and independent’. Soon after surgery, a stroke left her with a ‘profound neurological

9 Buchanan and Brock also believe the moral authority of advance directives rests in part on the value of protecting people from unwanted, virtually futile interventions, and of enabling people to save their relatives from emotional and financial burdens (Buchanan and Brock 1990: 100).

10 For a recent, clear, and succinct statement of this view, see Joanne Lynn et al. (1999). Many of Lynn’s co-authors disagree with this view, of course.

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deficit’, and a few days later she developed a breathing problem. Her doctors had to decide whether to follow her living will and let her die. Such cases are a mainstay of the advance directives literature.11

Do such patients still have the preferences and interests they had when the living will was executed, and if not, why should we respect living wills? Once they become permanently incompetent and unable to comprehend their earlier preferences and interests, it is hard to say that they still have those preferences and interests. If we cannot attribute those preferences and interests to the patient at the time a living will takes effect, how are we respecting the patient’s autonomy, or promoting his or her interests, by following the living will? The same questions arise with substituted judgment: If the patient no longer has the preferences that support that judgment, why should we treat the patient as he or she would want if he or she were competent?

Rebecca S. Dresser and John A. Robertson argue that preferences and interests do not survive a loss of the mental capacity necessary to comprehend them, and that respecting those preferences and interests does not constitute respect for that person’s autonomy. Robertson:

Unless we are to view competently held values and interests as extending even to situations in which, because of incompetency, they can no longer have meaning, it matters not that as a competent person the individual would not wish to be maintained in a debilitated or disabled state . . . Yet the premise of the prior directive is that patient interests and values remain significantly the same, so that those interests are best served by following the directive issued when competent . . . we should focus on [incompetent patients’] needs and interests as they now exist and not view them as retaining interests and values which, because of their incompetency, no longer apply. (Robertson 1991: 7)

The problem is not simply that earlier preferences and interests may not survive, but also that following the earlier preferences, or promoting the earlier interests, may harm the now-incompetent patient (Robertson 1991: 7).12 In most medical cases, when a patient’s treatment preference conflicts with his or her current welfare interests, medical ethics tells us to respect the preference — so long as the patient is choosing autonomously. However, in most cases the patient has that preference when the treatment is given; this may not be true when the preference was formed before the patient became incompetent and unable to comprehend that preference. The same point applies to surviving interests.

3.3. Personal Identity

Many bioethicists discuss these issues in terms of personal identity, invoking a theory of personal identity of the kind proposed by John Locke, Derek Parfit, and

11Similar cases, some real and some fictional, are discussed by Allen E. Buchanan and Dan W. Brock (1990: 108), Ronald Dworkin (1993: 221, 226), Norman Cantor (1993: 101), and Dresser and Astrow (1998).

12See also Lynn et al. (1999: 274); Wolf et al. (1991: 1668 – 9).

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seems not (Savulescu and Dickenson 1998: 230); we respect someone’s autonomy by respecting what that person wants, not what he or she used to want.

4.2. Extension View Treatments of Precedent Autonomy

Should we respect former preferences? Buchanan and Brock write as if this is not a problem:

A person can exercise self-determination not only by accepting or rejecting treatment that is now offered, but also by making decisions that will influence what is to happen in the future, when the person becomes incompetent. Consequently, following an advance directive can be viewed as a case of respecting self-determination, even if the individual has no self-determination to respect at the time the advance directive is carried out. (Buchanan and Brock 1990: 98 – 9)

It is true that trying to influence one’s future is an attempt at self-determination, but does it follow that respecting such earlier efforts amounts to respecting that person’s autonomy now, after he or she ‘has no self-determination to respect’? The question is not whether, at T1, that person is attempting to exercise selfdetermination, but whether, at T2, when we try to respect those earlier wishes, we thereby respect his or her self-determination — not at T1, before we act, but at T2, when we do act.

Nancy Rhoden

Nancy Rhoden rejects what she calls the ‘objective standard’, according to which we should treat the formerly competent in accord with their present welfare interests (Rhoden 1990: 846). One of Rhoden’s reasons for rejecting the objective standard is that it disregards the moral authority of earlier medical treatment decisions by patients who have become permanently incompetent (to the point of having no current preferences which might compete with the earlier preferences).17 Rhoden contends that ‘Actual prior choices are an exercise of autonomy and hence deserve far more weight than informally expressed preferences . . . because a person who makes a living will has exercised her right to decide’ (Rhoden 1990: 860).

However, according to the Moral Authority Objection, when someone is irreversibly incompetent, and therefore permanently unable to comprehend his or her earlier preferences, those preferences can no longer be attributed to that person,

17 Rhoden also rejects the objective standard on the grounds that, as a standard for withdrawing or withholding treatment, it can almost never be met except in cases of severe pain, and not every case where terminating life support is warranted fits this description. However, her main argument that some cases call for terminating life support even in the absence of severe pain is that prior preferences command respect, so I will concentrate on her positive arguments for respecting precedent autonomy, rather than her criticisms of the objective standard.

and thus we have no moral reason to respect those preferences — even if the patient has no current preferences to compete with the earlier ones. Although Rhoden does not articulate this objection, one of her arguments seems directly relevant to it. She contends that ‘rejecting future-oriented choices threatens present ones’ (Rhoden 1990: 856). If we reject every future-oriented choice once a patient becomes incompetent, then we will reject such choices even when they were made immediately before the patient became incompetent, and in anticipation of the incompetence itself. This means that, in cases where the patient’s incompetence is reversible, we end up rejecting a person’s current preferences, for if the incompetence is reversible, the preferences are not former ones. For example, ‘a Jehovah’s Witness could refuse a blood transfusion until he ‘‘bled out’’ and became incompetent, after which he could be transfused’ (Rhoden 1990: 857). The Witness is incompetent, and according to the Moral Authority Objection the refusal should be ignored, yet the refusal seems clearly to be one we should respect. Therefore, becoming incompetent does not invalidate one’s earlier preferences.

Rhoden argues that the only difference between such cases and other cases of advance medical decision making is that the preference was expressed immediately before competence was lost and treatment was indicated. However, the passage of time is irrelevant (assuming no other factors alter with time). Therefore, the treatment preferences expressed in living wills should be respected. Rhoden concludes that ‘present autonomy and precedent autonomy are simply two ends of a continuum’, and that ‘rejecting precedent autonomy threatens a fairly broad spectrum of present, prior, and mixed present/prior choices’ (Rhoden 1990: 857). Let us call this the Continuum Argument.

However, to refute the Moral Authority Objection, this case would have to involve former preferences, not current ones — and that requires irreversible incompetence. If the Witness’s incompetence were medically irreversible, then the preference announced in his living will would be a former one. Here, the Witness’s incompetence is reversible, so he retains both the capacity and the disposition to refuse blood transfusions.18 Therefore, his preference against being transfused is not a former preference even when he is unconscious. Proponents of the Moral Authority Objection do not deny that current preferences should be respected, and would doubtless agree that the Witness’s refusal should be respected even while he is unconscious. Because the case which supports the Continuum Argument does not concern former preferences, it does not refute the Moral Authority Objection.

18 The Jehovah’s Witness’s incompetence can be reversed only if he is transfused. If we honor his wishes and do not transfuse him, he will never regain competence. However, this does not make his incompetence irreversible. The fact that regaining competence requires acting against the patient’s preference does not mean that he cannot regain competence — only that it is not possible to honor his wishes and simultaneously restore him to competence. His incompetence is reversible even if it is never reversed. Thus, this is not a case of permanent incompetence and former preferences.