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Second thoughts on living wills.

Advance directives in their many variations continue to be the preferred solution to treatment decisions for incompetent patients. [1] Recommended by most medical ethicists and advisory bodies, they have achieved judicial or legislative recognition in more than forty states. The Cruzan decision came close to granting them constitutional status. And through the Patient Self-Determination Act federal law now encourages their use by requiring hospitals to inform patients of their right to make such directives.

Given the rising tide in favor of living wills it might seem surprising--and surely politically incorrect--to call their use into question. Yet living wills strike me as an initially appealing but inadequate solution to decisionmaking for incompetent patients. [2] Despite their allure and short-term benefits, they are full of contradictions that threaten the welfare of incompetent patients. Before discussing my objections, however, let me forthrightly acknowledge two benefits of living wills that explain much of their appeal.

One is that advance directives do give competent persons a sense of control over future decisions if they become incompetent. The living will thus empowers people, by extending the scope of personal autonomy to situations in which autonomy cannot be directly exercised. The individual when competent determines the course of her life when incompetent, thus gaining the assurance that she will later be viewed in light of previously expressed preferences. In addition, the certainty that excessive treatment will not be imposed at a later time reassures those fearful of a debilitated future.

The second advantage is that living wills, if specific enough, to provide a workable rule for nontreatment decisions that appears to respect autonomy without compromising respect for incompetent patients. Rather than wrestle with difficult questions about the quality or worth of an incompetent patient's life, treatment can be withheld if the prior directive so specifies. Thus living wills have played an important role in achieving the now widely accepted recognition that treatment can be withheld, in appropriate circumstances, from both competent and incompetent patients.

Yet despite these advantages, it is noteworthy that in practice advance directives have not been so warmly embraced by those they are intended to help. Polls show that only a few people actually make them out. [3] Even when they do, physicians sometimes are very reluctant to follow them. Moreover, living will laws have traditionally been limited to narrowly defined "terminal conditions," leaving other debilitating conditions outside of their purview. [4]

While federal law will increase the use of advance directives by notifying hospital patients of their availability, existing statutory restrictions and the limited use of living wills even where available suggest that ordinary people and policy makers alike distrust--or are ambivalent about--their use in many circumstances. (Indeed, they are accepted most readily only in those circumstances where they are least needed.) Interestingly, this distrust stems from the same source as their advantages. Both grow out of the conceptual confusions and contradictions that inhere in the use of an advance directive to control a future situation.

Confusions and Inconsistencies

A main problem with living wills is that the assumptions underlying their use are confused or not clearly distinguished. It is usually assumed that the justification for giving the competent person power over decisions when she is incompetent is that the competent person is best situated to identify what those future interests are. That is, the prior directive is taken to be the most accurate indicator of the person's interests once she becomes incompetent.

The problem, however, is that the patient's interests when incompetent--viewed from her current perspective--are no longer informed by the interests and values she had when competent. The values and interests of the competent person no longer are relevant to someone who has lost the rational structure on which those values and interests rested. 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. If the person is no longer competent enough to appreciate the degree of divergence from her previous activity that produced the choice against treatment, the prior directive does not represent her current interests merely because a competent directive was issued. [5] Although still the same person, the patient's interests have changed radically once she becomes incompetent. 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.

The point stated here will be rejected by persons who believe that the self should be viewed as a whole that exists over one's entire life. [6] In their view, focussing on the situation of the incompetent patient without taking account of his or her previously held interests and values misdescribes patients by treating them too narrowly. Since previously competent persons have a history of values and preferences, they should be treated as having the same values and interests even when they become incompetent.

In my view, this position overlooks the important fact that at different stages and times of life we have different interests. When our situations change drastically, our interests and preferences also change. The difference between competent and incompetent interests is so great that if we are to respect incompetent persons, we should focus on their needs and interests as they now exist, and not view them as retaining interests and values which, because of their incompetency, no longer apply.

The confusion between past competent and present incompetent interests risks harming incompetent patients in situations in which competent and incompetent interests diverge. Advance directives, which reflect competent values and interests, may inaccurately reflect the interests of the incompetent patient who is in a radically different situation, in which values and interests dependent on a rational structure no longer apply. Yet the situation of the incompetent patients is viewed through the lens of her prior competent self rather than how she now is, which to tends to devalue the more limited interests of a patient no longer moved by the concerns that once animated her when competent.

A more accurate justification for living wills would focus on their value to competent patients in controlling their future. Although advance directives do not always accurately reflect incompetent patients' interests, they do reflect the interests of competent persons in determining their future. Indeeed, the clearest and most honest justification for the living will is that it gives competent persons certainty and assurance about how they will be treated when incompetent, thus serving the interests of competent patients in controlling their future.

But this rationale makes all the clearer the possibility of conflict between past competent and current incompetent interests--between the need of the competent patient for control and certainty and the need of the incompetent patient for treatment. Except when both sets of interests coincide, the competent person's advance certainty is bought at the possible cost of denying needed treatment to the incompetent person he or she has become. Under either rationale, the possibility of conflict with the incompetent patient's interests arises, yet is not acknowledged. This tradeoff may be an acceptable policy choice, but it cannot always be justified either as protection for the incompetent patient or as a necessary or desirable implication of personal autonomy.

To determine whether this conflict has practical rather than merely theoretic significance, we need to know how often incompetent persons have interests in being treated that are denied on the basis of prior directives. It is impossible to gauge the frequency of conflict at the present time because so little attention has been given to this problem. Still, anecdotes abound of cases in which patients treated despite a directive recover and are grateful. We also often hear of situations in which doctors are reluctant to follow living wills because they think the patient should be treated. [7] In any event, it is plausible to think that there will be many cases in which conscious incompetent patients clearly have interests in treatment that a prior directive would deny. As the use of living wills expands, there are likely to be many more such conflicts. Of course, in many situations--particularly of terminal illness--there will be no conflict, because the incompetent patient will have no current interest in treatment. But in those circumstances it should not be necessary to rely on an advance directive to have treatment withheld.

This then is the nub of the problem that I see with living wills. Because they either confuse the present interests of an incompetent patient with interests she had when competent, or forthrightly privilege the competent person's interest in control and certainty over the incompetent patient's current interests, they pose a threat to incompetent patients. If this threat arises in many cases, it is a serious problem for an ethical-legal position that purports to be patient-centered. Of course, a patient-centered policy may not be morally required in all circumstances, and perhaps should be modified. However, when respect for the incompetent patient purports to be the central value animating ethical and legal norms for nontreatment, deviations from this standard should not be hidden by the legerdemain of prior directives.

At the very least the possibility of such conflicts should be recognized, and some attempt made to assess their frequency. Yet medical ethicists and policy makers have hardly noted, much less addressed this risk (though it is reflected in the ambivalence and distrust that surrounds living wills in practice). [8] Moreover, doubts rise about whether those who execute advance directives are exercising autonomy in an informed way if they are not even aware of the conflict. Rarely are they told that the directive they make reflects their current interests and may not be a good dictator of their interests as an incompetent patient. If this conflict were forthrightly acknowledged, living wills would at least be made in an informed manner, and thus more clearly deserve respect as an indicator of the competent person's autonomy.

Finally, the implications of the autonomy principle for other kinds of prior directives should be noted. If prior directives are to control, even when patient interests conflict, would not this same principle apply to other directives or contracts that regulate the future, including directives that take effect when the person is later competent, such as surrogate mother contracts or agreements for the disposition of frozen embryos? Persons who oppose enforcing such contracts will say that the individual's competent change of mind distinguishes these situations from that of the living will, but autonomy in controlling the future by advance directive nonetheless appears to be involved in both cases. [9]

Once acknowledged, the possibility of conflict between competent wishes and incompetent interests will direct attention away from the question of what the incompetent patient wanted when competent, to the central issue of whether treatment or nontreatment best serves the interests of the now incompetent patient. If this question were faced squarely there would be no need to rely on the prior directive (unless in cases of conflict we want to privilege the competent person's certainty over the incompetent patient's need). The needs of the incompetent patient would be directly addressed, and treatment given or withheld on the basis of her current interests, as the appropriate proxy or other decisionmakers decide.

In fact, we can usefully understand the living will as a device that functions to avoid assessing incompetent patient interests (though avoiding the question directly is itself a value judgment about the worth of incompetent lives). Introduced at a time of great uncertainty about the legitimacy of nontreatment of incompetent patients, the living will purported to allow nontreatment to occur without assessing quality of life. In fact, however, a quality of life assessment was hidden in the narrow definitions of "terminal condition" for which the living will was most easily accepted. With more than fifteen years of debate over nontreatment of incompetent patients behind us, it is now time to address quality of life directly, and not cloak it with diversionary investigations into prior wishes. Indeed, a direct assessment of patient interests, now undertaken when the patient never was competent and in many jurisdictions when no prior directive was made, focuses directly on the incompetent patient's welfare, and thus is most respectful of the now incompetent patient.

Looking to the Future

Where does this leave us with regard to advance directives and public policy? It would seem useless at this point--the equivalent of tilting at bioethical windmills--to try to stave off or reverse the living will juggernaut. So let me suggest the following steps to alleviate the worst problems that an unblinking faith in prior directives brings.

First, assure at the very least that makers of living wills are informed of the potential conflict between their future interests when incompetent and their current interests in achieving certainty about how they will be treated when incompetent. There is a tradeoff here that should be recognized so that the exercise of present autonomy is truly informed.

Second, prepare for the more frequent emergence of conflicts over whether advance directives should be enforced when they conflict with the incompetent patient's current interests. The theory of the living will does not even acknowledge such a conflict, yet many situations will arise in which the incompetent patient appears to have an interest in treatment that conflicts with a prior directive. Rather than simply enforce all prior directives, doctors, family, and others involved in the care of incompetent patients should be able to question whether the patient's interests would best be served by actions contrary to the living will, in situations in which the incompetent patient appears to have an interest in further life. A procedure that avoids an overly rigid vitalism will have to be devised to resolve these conflicts.

Third, begin direct, explicit assessments of the quality of life and best interests of incompetent patients. Distinguishing those situations of incompetent existence that have value for incompetent patients will be difficult in many cases. But this is the basic value question that treatment decisions for incompetent patients necessarily raise, and it should be forthrightly addressed. States deemed to have sufficient value for such patients to warrant treatment should be identified and guidelines formulated to prevent manipulation and abuse of a best interests approach.

Advance directives at present neatly evade these messy questions, but they inexorably arise. They are unavoidable with regard to patients who have never been competent, or who when competent never issued a prior directive. Rather than always treat, most courts and commentators recognize some room for a best interests test in these circumstances. It is time to bring such assessments out of the closet and apply them to all situations involving incompetent patients. Indeed, such assessments will help determine whether living wills are actually hurting patient interests. Ironically, if they are not, there is no need to rely on them, because treatment may be withheld when patients have no further interests in treatment regardless of a prior directive. On the other hand, if enforcing living wills harms incompetent patients, the rationale for enforcing them is questionable.

Fourth, do not constitutionalize advance directives. The opinions in Cruzan suggest that a majority of the Supreme Court may be ready to protect health care directives as part of Fourteenth Amendment liberty. [10] Such a move would be unwise and constitutionally unjustified. Constitutionalizing prior directives will limit state efforts to protect the welfare of incompetent patients when their interests conflict with a prior directive. Moreover, the autonomy interest in avoiding bodily intrusions, which deserves constitutional status under the Fourteenth Amendment when those intrusions are imposed on a competent patient, is not implicated in a person's interest in controlling future situations of incompetency. At the very least, states should be free to balance competent and incompetent patient interests as they see fit, free of constitutional constraints that enshrine living wills as beyond challenge.

Living wills have played an important role in the ethical and policy debate over treatment decisions for incompetent patients, but it is time to move beyond them to the central issues of what quality of life for incompetent patients is worth protecting. Although not explicitly acknowledged, such assessments are now occurring with patients who were never competent or who never issued a health care directive. They are also figuring in the growing debate over allocation of medical resources at the end of life.

Directly assessing quality of life, however, is difficult and threatening, and may be too politically divisive to be done openly. If so, these questions will continue to be framed in terms of prior directives and substituted judgment when directives are lacking. As a second best solution, this approach is preferable to a vitalist rule of always treat. But the living will's conceptual frailties limit its usefulness, and it is of little help where prior directives or wishes cannot be ascertained.

Ironically, just as advance directives gain wide acceptance, their inherent problems emerge. Unless we want to privilege competent choice over incompetent interests, the living will focuses on the wrong issue. It can no longer save us from the difficult task of determining which incompetent states of existence are worth protecting.

References

[1] I include here living wills, durable powers of attorney, appointment of health care proxies, advance directives for or against treatment, and other devices that allow a competent person to give directions concerning her medical treatment if she becomes incompetent, although there are important differences among them.

[2] See Rebecca Dresser and John A. Robertson, "Quality of Life and Nontreatment Decisions for Incompetent Patients: A Critique of the orthodox Approach," Law, Medicine & Health Care 17 (1989): 23444.

[3] Linda Emanuel and Ezekiel Emanuel, "The Medical Directive: A New Comprehensive Care Document," JAMA 261 (1989): 3288-93.

[4] John A. Robertson, "Cruzan and the Constitutional Status of Nontreatment Decisions for Incompetent Patients," Georgia Law Review 25 (1991): 1139-1202. See also Gregory Gelfand, "Living Wills: The First Decade," Wisconsin Law Review (1987): 737-822.

[5] Rebecca Dresser, "Life, Death and Incompetent Patients: Conceptual Infirmities and Hidden Values in the Law," Arizona Law Review 28 (1986): 373-405; Rebecca Dresser, "Relitigating Life and Death," Ohio State Journal 51 (1990): 425-37.

[6] Nancy Rhoden, "Litigating Life and Death," Harvard law Review 102 (1988): 375-446.

[7] See for example "Evans v. Bellevue Hospital," New York Law Journal 28 (July 1987): 11.

[8] See for example Emanuel and Emanuel, "The Medical Directive."

[9] Robertson, "Cruzan and the Constitutional Status of Nontreatment Decisions."

[10] See especially Justice O'Connor's concurring opinion at 110 S.Ct. 2857 (1990).

John A. Robertson is Thomas Watt Gregory Professor, School of Law, University of Texas, Austin, Tex.
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Author:Robertson, John A.
Publication:The Hastings Center Report
Date:Nov 1, 1991
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