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The place of autonomy in bioethics.

The Place of Autonomy in Bioethics

I come not to bury autonomy, but to praise it. Yet my praise is somewhat muted; for autonomy merits only two cheers, not three. Five years ago at the fifteenth anniversary of the founding of The Hastings Center the general theme was "Autonomy - Paternalism - Community." Hearing several sharp criticisms - indeed, virtual rejections of autonomy - I stressed in my oral remarks and later in my published paper that we "need several independent moral principles, such as individual and communal beneficence and respect for personal autonomy." It is "unfortunate and even pernicious," I continued, to suggest that "biomedical ethics is allegedly moving beyond autonomy to community and paternalism," for such an approach would reduce "ethical reflection to a mere mirror of societal concerns at a particular time, when in fact the task for serious ethical reflection is to indicate the importance and relative weight of several moral considerations that should be maintained in some tension or balance."[1]

Reaffirming that statement five years later, I want to defend the principle of respect for personal autonomy as one among several important moral principles in biomedical ethics. My defense will proceed by sketching and clarifying some presuppositions and implications of this principle in light of several major criticisms. Many of those criticisms are misplaced, because they are (perhaps deliberately) not directed at the most defensible conceptions of the principle of respect for autonomy. I will contend that an adequate conception of the principle of respect for autonomy can meet the main criticisms levelled by various critics, whether communitarians, narrativists, virtue theorists, traditionalists, or religionists. My main argument focuses on the principle of respect for autonomy as an important moral limit and as limited. As a moral limit, it constrains actions; but it is also limited in scope and in weight, in addition to being complex in its application. Both critics and defenders tend to neglect these senses of limit in their focus on an oversimplified, overextended, overweighted principle of respect for autonomy.

Misdirected Criticisms

In several ways, the principle of respect for autonomy has been misunderstood and misinterpreted, in part as a result of flawed formulations and defenses by its supporters. Critics have often supposed that they were attacking the concept of autonomy when in fact they were aiming their fire at particular conceptions of autonomy, often the least defensible ones.

It has been a mistake to use the term "autonomy" or even the phrase "principle of autonomy" as a shorthand expression for "the principle of respect for autonomy."[2] It is important to correct this mistake because many critics seem to suppose that proponents of this principle have an ideal of personal autonomy and believe that we ought to be autonomous persons and make autonomous choices. However, the ideal of personal autonomy is neither a presupposition nor an implication of the principle of respect for personal autonomy, which obligates us to respect the autonomous choices and actions of others.

The ideal of autonomy must be distinguished from the conditions for autonomous choice. It is important for the moral life that people be competent, be informed, and act voluntarily. But they may choose, for example, to yield their first-order decisions (that is, their decisions about the rightness and wrongness of particular modes of conduct). For example, they may yield to their physicians when medical treatment is proposed or to their religious institution in matters of sexual ethics. Abdication of first-order autonomy appears to involve heteronomy, that is, rule by others. However, if a person autonomously chooses to yield first-order decisionmaking to a professional or to a religious institution, that person has exercised what may be called second-order autonomy.(3) People who are subservient to a professional or to a religious institution may lack first-order autonomy - self-determination regarding the content of their first-order decisions and choices - because they have exercised and continue to exercise second-order autonomy in selecting the professional or institution to which they choose to be subordinate. Hence, in those cases, respect for their second-order autonomy is central, even though their first-order choices are heteronomous. This point is important because of the common supposition that the principle of (respect for) autonomy is at odds with all forms of heteronomy, authority, tradition, etc.

The term "respect" also requires amplification. One meaning of respect is to refer to or have regard for or to consider. For example, a boxer may respect his opponent's right hook. A second meaning is more relevant - to consider worthy of high regard, to esteem, or to value. This meaning reflects the attitude that is proper in relation to autonomous choices. Although this attitude does not depend on the content of those choices, it is not inconsistent with criticism of them. In a third sense, respect is more than an attitude, it is an act of refraining from interfering with, or attempting to interfere with the autonomous choices and actions of others, through subjecting them to controlling influence, usually coercion or manipulation of information.(4)

The principle of respect for autonomy can be stated negatively as "it is [prima facie] wrong to subject the actions (including choices) of others to controlling influence." This principle provides the justificatory basis for the right to make autonomous decisions. This right in turn takes the form of specific autonomy-related (if not autonomy-based) rights, such as liberty and privacy. This negative formulation focuses on avoidance of controlling influences, including coercion and lying. However, the principle of respect for autonomy also has clear positive implications in the context of certain relationships, including health care relationships. For example, in research, medicine, and health care, it engenders a positive or affirmative obligation to disclose information and foster autonomous decisionmaking. Nevertheless, it is important to distinguish negative and positive rights based on or related to the principle of respect for autonomy, and the limits on positive rights may be greater than the limits on negative rights. For example, the positive right to request a particular treatment may be severely limited by research protocols and by just allocation schemes.

Finally, the principle of respect for autonomy is ambiguous because it focuses on only one aspect of personhood, namely self-determination, and defenders often neglect several other aspects, including our embodiment. A strong case can be made for recognizing a principle of "respect for persons," with respect for their autonomous choices being simply one of its aspects - though perhaps its main aspect. But even then we would have to stress that persons are embodied, social, historical, etc. Some of these issues emerge when we try to explicate the principle of respect for autonomy by noting its complexity.

Complexity of Respect for Personal

Autonomy

In determining what the principle of respect for autonomy requires, it is important to recognize its complexity, which is widely neglected by both defenders and critics. Some of my earlier remarks highlighted aspects of this complexity - for example, the distinction between first-order and second-order choices. Because of the complexity of persons, judgment is required, rather than the mechanical application of a clear-cut moral principle.

One difficulty in respecting people's choices is determining what they are choosing, what preferences they are expressing, etc. This complexity is magnified because people communicate not only through written statements (such as signed consent forms) or through words, but through nonverbal signs as well.(5)

Furthermore, patients may be ambivalent or even express contradictory preferences. In the maze of signals, the professional may have to make a judgment about whether a patient really wants full or only partial disclosure, or really wants to undergo a test to determine whether he could donate a kidney to a sibling, etc.

Another major difficulty in respecting personal autonomy stems from the fact that people exist in and through time and their choices and actions occur over time. Consent itself is given and withdrawn over time and a patient's present statements should not always be taken at face value. Hence in discharging our obligations under the principle of respect for autonomy, we not only have to determine whether a patient is autonomous and just what he or she is choosing, we also have to put that patient's present consents and dissents in a broad temporal context encompassing both the past and the future. As temporal beings through and through, people may express different preferences at different times. Often discussion of the principle of respect for autonomy focuses on the present moment - for example, is there an informed consent or refusal at this time? Respecting persons becomes very complex when their temporality is properly included. Which choices and actions should we respect? In particular, is it justifiable to override a patient's present autonomous choices and actions in the light of his/her past or (anticipated) future choices and actions? And is a decision to do so respect for personal autonomy or a paternalistic breach of the principle of respect for autonomy?(6)

Past or prior consent/refusal poses no problem if the patient cannot currently autonomously express his or her wishes. As in the case of advance directives, we respect personal autonomy by acting on that past or prior statement. Matters become more problematic, however, when a person's present choices appear to contradict those previous choices, which may have even been made with a view to preventing future change. For example, in one case a twenty-eight-year-old man decided to terminate chronic renal dialysis because of his restricted lifestyle and the burdens on his family - he had diabetes, was legally blind, and could not walk because of progressive neuropathy. His wife and physician agreed to provide him medication to relieve his pain while he died and agreed not to put him back on dialysis even if he requested it under the influence of uremia, morphine sulfate, and ketoacidosis (the last resulting from the cessation of insulin). While dying in the hospital, the patient awoke complaining of pain and asked to be put back on dialysis. The patient's wife and physician decided to act on the patient's earlier request that he be allowed to die, and he died four hours later.(7) In my judgment, the spouse and physician should have put the patient back on dialysis in view of his current request and the irreversibility of the decision to let him die in accord with his earlier statements. After putting him back on dialysis, they could have determined if he had autonomously revoked his prior choice; if he then persisted in his prior decision, they could have proceeded again with more confidence.

A critical question in this case and others is whether people have autonomously revoked their previous consents/refusals. Thus, it is necessary to continue to assess a person's degree of autonomy over time to determine whether he or she is autonomously revoking previous consents or dissents. The principle of respect for autonomy requires that we attend to both a person's prior consent/refusal and present revocation, but the present revocation takes priority if it is autonomous.

What is the role of authenticity in judgments about which actions respect personal autonomy? The consistency or inconsistency of a present choice or action with a person's life plan and risk budget over time may help us determine whether the revocation is genuine. For Bruce Miller, authenticity means that "an action is consistent with the attitudes, values, dispositions and life plans of the person."(8) Its intuitive idea is "acting in character." We wonder whether actions are autonomous if they are out of character (for example, a sudden and unexpected decision to discontinue dialysis by a woman who has displayed considerable courage and zest for life despite years of disability). Similarly, we are less likely to challenge actions as nonautonomous if they are in character (a Jehovah Witness's refusal of a blood transfusion, for example). Nevertheless, as important as the idea of character is, it would be a mistake to make authenticity a criterion of autonomy. At most, actions apparently out of character and inauthentic can be caution flags that warn others to request explanations and justifications to determine whether the actions are autonomous. It is important, however, not to rule out in advance the possibility of a change or even a conversion in basic values.

In some situations the health care professional may have good reasons to believe that if a patient is kept alive, for example, by a particular treatment that she is now refusing, she will eventually ratify the coercive or deceptive treatment on her behalf, perhaps even thanking the professional. Such a ratification does occur in some cases. Can anticipation of future consent justify present actions against a patient's express choices, in part on the grounds that the present actions respect what the person will be rather than what she now is? My response is that actual or predicted future consent is neither necessary nor sufficient to justify interventions against current choices. At most, a patient's probable future consent may provide evidence that the criteria for justified paternalistic interventions have been met.(9)

Finally, respecting personal autonomy is complex because there are several varieties of consent and refusal. Although express consent (or refusal) is the primary model, consent (or refusal) may also be implicit, tacit, or presumed. To take one example, solid organ procurement in the U.S. is structured around express consent or donation, whether by the individual while alive or by the family after the individual's death. But there is also presumed consent in the donation of corneas in a dozen states. Presumed donation is not necessarily a breach of the principle of respect for autonomy. In some circumstances, silence or a failure to refuse donation could appropriately be construed as donation. For presumed donation - perhaps better viewed as tacit donation - to be autonomous and valid, society needs to make sure that the conditions of understanding and voluntariness have been met. Otherwise, the appeal to presumed donation may only be expropriation.

Scope or Range of Respect for

Autonomy

In explicating the principle of respect for autonomy as limited, I want to focus on its limited scope or range, and on its limited weight or strength. If these limits are not recognized, it is too easy to dismiss the principle as extending too far or as outweighing or overriding too much. Deflation of claims for and about the principle of respect for autonomy is essential to its preservation.

Respect for persons who are autonomous may legitimately differ from respect for persons who are not autonomous. The presence, absence, or degree of autonomy is a morally relevant characteristic (though hardly the only morally relevant characteristic) in shaping our actions and attitudes toward others. When people are autonomous, respect for them requires (or prohibits) certain actions that may not be required (or prohibited) in relation to nonautonomous persons. Several principles may establish minimum standards of conduct, such as noninfliction of harm in relation to all persons whatever their degree of autonomy. But what the principle of respect for autonomy requires (and prohibits) in relation to autonomous persons and in relation to nonautonomous persons will differ. Thus, Kant excluded children and the insane from his discussion of the principle of respect for persons and Mill applied his discussion of liberty only to those in the "maturity of their faculties."

Nevertheless, it is appropriate to operate with a presumption in favor of adults' autonomy, unless and until they are determined to be substantially nonautonomous. Several factors of autonomy are relevant; these include incompetence, i.e., an inability to perform certain tasks, lack of understanding, and lack of voluntariness (both internal and external). When these signs of nonautonomy occur, and people are at risk of harm or loss of benefits to themselves, interventions based on beneficence can be justified, and they do not violate the principle of respect for autonomy even if the person refuses. This is limited beneficence or limited paternalism.(10)

However, the principle of respect for autonomy can be overextended in ways that are misleading and even dangerous. One simple but risky overextension is to refer to the cadaveric source of organs for transplantation as a donor even if he or she never "donated," perhaps because the individual never had autonomy or never chose to donate. The donor is one who autonomously decides to donate, whether an individual while alive or a family member after the individual's death. If the decedent never made a decision to donate while alive, the family is the donor. A more troubling example can be found in presumed (consent) donation for corneas; as noted above, it often appears to be a fiction for expropriation.

Another troubling example is the appeal to substituted judgment in circumstances where it does not plausibly apply. If a person has previously (and competently) expressed preferences with sufficient clarity, that person's autonomous preferences can and should be extended to periods of lack of autonomy. However, for patients who have never been autonomous or for previously autonomous patients whose prior preferences and values cannot be reliably traced, it is more defensible to rely on a best-interests standard, based on nonmaleficence and beneficence, rather than on a substituted judgment standard, based on autonomy. The standard of substituted judgment should be rejected in such situations as an illegitimate fiction.

A final point needs to be made about scope or range. The "principle of autonomy" has been criticized as minimalist and perhaps even egoistic in nature or at least in application in our sociocultural context.(11) This criticism focuses on a person's claim to have his or her autonomy respected rather than on a person's obligation to respect the autonomy of others. The principle of respect for autonomy, however, involves correlative rights and obligations. And it is thus a principle of obligation, rather than liberation from obligation. Here again the confusion may stem in part from the misleading language of "principle of autonomy," which should be replaced by the "principle of respect for autonomy."

Even as a principle of obligation, respect for autonomy does not exhaust the moral life. Other principles are important, not only where autonomy reaches its limits. For example, focusing narrowly on the principle of respect for autonomy can foster indifference; thus principles of care and beneficence are necessary. But without the limits set by the principle of respect for autonomy, these other principles may support arrogant enforcement of "the good" for others. Nevertheless, these and other principles sometimes outweigh or override the principle of respect for personal autonomy.

Limits of Weight or Strength

The principle of respect for autonomy is more than a maxim. Yet it is not absolutely binding and does not outweigh all other principles at all times. Two major alternatives remain. It could be viewed as serially ordered, taking absolute priority over some other principles; or it could be viewed as prima facie binding, competing equally with other prima facie principles in particular circumstances. I take the latter approach. Even though this avoids a priori rankings and is thus case-oriented or situational, it is different from some perspectives on casuistry, because the logic of prima facie principles dictates a procedure of reasoning or justification for infringements of principles in particular circumstances. For example, the prima facie principle of respect for autonomy can be overridden or justifiably infringed when the following conditions are satisfied: Proportionality - When in the circumstances there are stronger competing principle(s); Effectiveness - when infringing the principle of respect for autonomy would probably protect the competing principle(s); Last Resort - when infringing the principle of respect for autonomy is necessary to protect the competing principle(s); Least Infringement - when the infringement of the principle of respect for autonomy is the least intrusive or restrictive in the circumstances, consistent with protecting the competing principle(s).(12)

In addition, wherever possible and appropriate, we should explain and justify the infringement of the principle of respect for autonomy to those agents whose autonomy has been infringed.

The question of mandatory screening or testing for HIV infection instructively illustrates the reasoning required when moral values conflict. As the first public health crisis in an era of firmly established civil rights and liberties, AIDS poses important questions about the place and significance of the principle of respect for autonomy, especially in relation to the community as well as to other individuals. The needs of the community in public health may well override the rights related to the principle of respect for autonomy of some individuals under some circumstances to reduce the spread of HIV infection. Consider, for example, the principles or rules of liberty, privacy, and confidentiality. These may be derived from the principle of respect for autonomy, but even if they have independent standing, they are nevertheless closely related to the principle of respect for autonomy, for individuals may exercise or waive their rights to liberty, privacy, and confidentiality and thereby remove the constraints on actions by others in particular cases. But even when individuals do not waive their rights, their rights and their autonomous choices regarding those rights may sometimes be overridden.

Even in actions to protect the community, it is important to start with a presumption in favor of the principle of respect for autonomy, as expressed in liberty and privacy, and then to determine whether that presumption can be rebutted by arguments for mandatory screening or testing. Critics sometimes doubt whether it is appropriate for the community to have to bear the burden of proof for overriding respect for autonomy, but in view of the community's power and tendency to abridge autonomy, along with the importance of the principle of respect for autonomy, this is not an inappropriate burden and it can sometimes be met. For example, if we apply the conditions identified above for overriding prima facie obligations, it would be necessary to consider the proportionality and effectiveness of any proposed mandatory screening or testing; the absence of an alternative; the least infringement of autonomy and privacy (the least restrictive and intrusive options) consistent with achieving the end; and finally, an explanation and justification to those whose autonomy and liberty are infringed on behalf of a communal good.(13) In view of what we now know about HIV and its transmission, very few types of mandatory screening and testing would meet these conditions - donations of blood, semen, and organs and perhaps a few others.

This pattern of justification holds in efforts to protect the community or other individuals, including health care professionals, within the community. Whatever the target, it is important to recognize when the principle of respect for autonomy - and associated principles - are being overridden, rather than camouflaging the justification as one of respect for autonomy. The wrong approach appears in recent Virginia legislation that appeals to "deemed consent" to justify HIV testing and release of test results in certain situations. The legislation provides that

whenever any health care provider, or any person employed by or under the direction and control of a health care provider, is directly exposed to body fluids of a patient in a manner which may, according to then current guidelines of the Centers for Disease Control, transmit human immunodeficiency virus, the patient whose body fluids were involved in the exposure shall be deemed to have consented to testing for infection with human immunodefeciency virus. Such patient shall also be deemed to have consented to the release of such test results to the person who was exposed. In other than emergency situations, it shall be the responsibility of the health care provider to inform patients of this provision prior to providing them with health care services which create a risk of such exposure (Virginia Code [Section] 32.1-45.1; emphasis added).

The danger of both overextending and overweighting the principle of respect for autonomy is evident in this move to "deemed consent." It is an inappropriate fiction to construe testing and release of information as based on the principle of respect for autonomy in situations where individuals did not consent and perhaps even explicitly refused to consent. Whatever the rationale for the Virginia legislation, it is better to face directly the conflict between the principle of respect for autonomy and other principles rather than to reinterpret the principle of respect for autonomy by extending it to circumstances where it does not apply. Then we can address whether the principle of respect for autonomy can be outweighed by competing principles in the circumstances.

The principle of respect for autonomy is very important in the firmament of moral principles guiding science, medicine, and health care. However, it is not the only principle, and it cannot be assigned unqualified preeminence. A clear example of overconcentration on the principle of respect for autonomy and its implications can be seen in research involving human subjects, where for years the subject's voluntary, informed consent tended to overshadow all other ethical issues. As a consequence, there was neglect of other important moral considerations that must be met prior to soliciting the potential subject's consent to participate - e.g., research design, probability of success, risk-benefit ratio, and selection of subjects.(14) To be sure, if researchers do not receive the potential subject's voluntary, informed consent, they may not enlist that subject. However, the right of the potential subject to refuse to participate in research became for many the only moral constraint worthy of attention, even though this issue should not be addressed until other prior important ethical issues have been resolved.

In addition, concentration on the principle of respect for autonomy invited inadequate reasons for rejecting or redirecting some research on some populations. For example, critics of research involving prisoners tended to argue that the principle of respect for autonomy cannot be met in an inherently coercive environment. However, a more defensible ethical criticism emerges from the principle of justice - the unfair imposition of the burdens of research on a captive and vulnerable population many of whom have already suffered serious deprivations in the society.

Yes, we should go beyond the principle of respect for autonomy - in the sense of going beyond its misconceptions and distortions and in the sense of incorporating other relevant moral principles. But going beyond should not mean abandoning. Despite its complexity in application, despite its limits in scope or range and in weight or strength, and despite social changes, the principle of respect for personal autonomy has a critical role to play in biomedical ethics in the 1990s. But that role requires a sense of limits; we must not overextend or overweight respect for autonomy.

References

[1] James F. Childress, "Ensuring Care, Respect,

and Fairness for the Elderly," Hastings Center

Report 14:5 (1984), 27-31. For criticisms of

autonomy, see essays by Daniel Callahan,

Eric Cassell, and Robert Morison in the

same issue. [2] In the third edition of Principles of Biomedical

Ethics (New York: Oxford University Press,

1989), Tom L. Beauchamp and I reformulate

what we had earlier called "the principle

of autonomy" as "the principle of respect

for autonomy." [3] See, for example, Gerald Dworkin, "Autonomy

and Behavior Control," Hastings Center

Report 6:1 (1976), 23-28. [4] This formulation is influenced by Ruth R.

Faden and Tom I. Beauchamp, A History

and Theory of Informed Consent (New York:

Oxford University Press, 1986). [5] See, for example, Eric J. Cassell, Talking with

Patients, 2 vols. (Boston: MIT Press, 1985). [6] See James F. Childress, Who Should Decide?:

Paternalism in Health Care (New York: Oxford

University Press, 1982). [7] Childress, Who Should Decide?, 224-25. This

case was prepared by Gail Povar, MD. [8] Bruce Miller, "Autonomy and the Refusal

of Life-Saving Treatment," Hastings Center

Report 11:4 (1981), 22-28. [9] Childress, Who Should Decide?. [10] Childress, Who Should Decide?. [11] See, for example, Daniel Callahan, "Minimalist

Ethics," Hastings Center Report 11:5

(1981), 19-25. [12] For a somewhat different formulation, see

Beauchamp and Childress, Principles of

Biomedical Ethics, 3rd ed., 53. [13] See James F. Childress, "An Ethical Framework

for Assessing Policies to Screen for

Antibodies to HIV," AIDS and Public Policy

Journal 2 (Winter 1987), 28-31. [14] See, for example, James F. Childress, Priorities

in Biomedical Ethics (Philadelphia: The

Westminster Press, 1981), 51-73.
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Author:Childress, James F.
Publication:The Hastings Center Report
Date:Jan 1, 1990
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