Surrogate Decision-Making

views updated

SURROGATE DECISION-MAKING

•••

It is well established in medical ethics, practice, and law that the informed consent of competent patients must be secured before treatment. However, patients frequently are unable to participate in decision making about their treatment because of the effects of the illness, treatment, or underlying condition. This is especially common when patients are critically ill or near death, but it can happen at any time in the course of treatment. More specifically, patients who cannot make their own decisions are those who have been found to be incompetent to make a particular treatment choice; the determination of competence sorts patients into those whose treatment choices must be respected even if others disagree with them and those for whom decisionmaking authority will be transferred to another person.

When someone else must make decisions for a patient, a possible alternative is for their physicians to do that; when decisions are routine and uncontroversial, this is often what happens. However, when decisions have significant consequences for the patient, it is common practice to seek a surrogate or proxy to take the patient's place in decision making with the patient's physician.

The practice of and requirement for informed consent with competent patients are based on two central moral values: self-determination and patient well-being. Self-determination is the interest of ordinary persons in making important decisions about their lives for themselves and according to their own values; informed consent respects patients' self-determination. Patients' well-being is served by informed consent because the consent process allows a patient to decide which alternative treatment, including the alternative of no treatment, will best serve his or her values and life plans; the practice of informed consent usually, though not always, results in decisions that serve the patient's well-being. These two values can support the practice of surrogate decision making when a patient is not able to take part in decision making. The surrogate can be the person the patient authorized or would authorize to decide for him or her and can reflect the patient's values and life plans.

This entry examines in more detail how surrogate decision making can serve a patient's self-determination and well-being by considering two central issues: Who should be selected to be a patient's surrogate? and By what standards should a surrogate make decisions about a patient's care? (Buchanan and Brock). The entry then briefly considers some controversies about surrogate decision-making.

Selection of a Surrogate

Who should be selected to be a patient's surrogate? If the goal is to serve a patient's self-determination when that patient is unable to take part in decision making, it is appropriate to select the person whom the patient wanted or would want to act as a surrogate. If the goal is to serve the patient's well-being, it is appropriate to select a person who will be well positioned to represent the patient's interests and values. Sometimes the patient will have authorized another individual explicitly to act as his or her surrogate through an advance directive. In most states in the United States a durable power of attorney for healthcare (DPAHC) allows a patient to legally designate a surrogate to make healthcare decisions for him or her in the case of the patient's incompetence. Many other countries also have procedures for designating a surrogate. Ethically, there is a strong presumption that the surrogate should be the person whom the patient selected.

Most patients who become incompetent, however, do not have an advance directive to select a surrogate. In that case the surrogate should be the person whom the patient would have wanted to serve as a surrogate. In most cases it will be clear who that is: either a close family member or a friend who cares about the patient and knows the patient's values and wishes (Brock). When it is clear who the patient would have wanted to be the surrogate, there is a strong presumption that that is who should be selected. In the absence of a DPAHC or guardianship, many states in the United States have statutes authorizing a family member to make healthcare decisions for an incompetent patient; these statutes often list the order of the family members in terms of their relationship to the patient who should be selected. This presumption that a close family member should be the surrogate when the patient has not chosen one explicitly is justified by the fact that a close family member is the person whom most patients would want to be the surrogate. A close family member also usually will be most concerned to secure what is best for the patient and usually will know the patient best and thus be in the best position to represent the patient's wishes and values in decision making.

In cases where it is clear that the patient would have wanted someone besides the closest family member to be the surrogate, however—for example, because of conflict with or estrangement from that family member—that other person should be selected. In other cases there may be conflict between family members over who should serve as the surrogate. In either case it often is possible to resolve the question of who should be surrogate informally with the healthcare team or within the family. If those attempts fail, the healthcare team can have the responsibility to utilize the courts to attempt to obtain an appropriate surrogate for the patient.

In some cases there is no appropriate person available and willing to serve as the patient's surrogate. This typically occurs when no family members or friends can be located, or located in time, to make the necessary decisions. Different healthcare institutions have different procedures and practices for these cases. Relatively routine and uncontroversial decisions often are made by the healthcare team. For more consequential or controversial decisions, such as the patient's resuscitation status or the withdrawing or withholding of life-sustaining treatment, practice varies. Some institutions allow such decisions to be made by the healthcare team after consultation with others, such as the chief of service or an ethics committee. Others go to court to have a legally authorized surrogate appointed for the patient. It is important that healthcare institutions have clear procedures to follow when patients lack a natural surrogate so that decision making is not paralyzed but can proceed appropriately.

Standards for Surrogate Decision Making

What standards should surrogates employ in making decisions for incompetent patients? As in the selection of a surrogate, the standards for surrogate decision making should support the values of patient self-determination and wellbeing that underlie all treatment decision making. Viewed from this perspective, there are three ordered principles to guide surrogate decision-making. They are ordered in the sense that the first should be applied when possible; if that cannot be done, the second should be used, and if the second cannot be applied, the third should be used. This ordering means that the three principles should be understood as applying in different circumstances rather than as competing for application in the same circumstances.

The first principle is the advance directives principle, according to which decisions should be made in accordance with the patient's advance directive when one exists with instructions that relate to the decision at hand. The advance directive might be either a so-called treatment directive such as a living will with specific instructions about treatment the patient does or does not want in specific circumstances (whereas advance directives typically are used to decline treatment, they also can be used to indicate what treatment the patient wants) or a DPAHC that names a surrogate but also includes instructions about the patient's treatment wishes for the surrogate. Despite great efforts at the end of the twentieth century to increase the use of advance directives, most patients do not have one when they are incompetent to make their own decisions. Moreover, the instructions in advance directives are often so vague—for example, "if I am terminally ill no extraordinary measures should be applied"—that it is unclear what their implications are for the specific treatment decision at hand. As a result there usually will not be an advance directive available that clearly and decisively states the patient's wishes regarding the treatment choice in question.

When the advance directives principle cannot be applied for these or other reasons, the substituted judgment principle should be used. This instructs the surrogate to attempt to make the decision the patient would have made if he or she had been competent in the circumstances that obtain. More informally, it tells the surrogate to use his or her knowledge of the patient and the patient's values, wishes, and concerns to try to determine what the patient would have wanted. Even in the absence of explicit instructions from the patient, a surrogate often will know the patient well enough to have considerable evidence about what the patient would have wanted. However, some caution is needed when there has not been a prior explicit discussion between the patient and the surrogate about treatment because a number of studies have shown that family members frequently are mistaken in their judgments about patients' wishes, and physicians tend to do even less well in predicting patients' wishes in the absence of explicit prior discussions (Seckler et al.).

One of the most important functions of the substituted judgment principle is to emphasize that surrogates' role is not to determine what they would want in the circumstances if they were the patient or what they want for the patient but what the patient would want for himself or herself. An important responsibility of healthcare providers in working with surrogates is to help them understand their appropriate role however much what they might want for themselves differs from what the patient would want.

When there is no surrogate available who knows the patient well or, more specifically, has knowledge of the patient bearing on the treatment choice at hand, the best interests principle should be employed. That principle instructs the surrogate to attempt to make the choice that best serves the patient's interests. In practice this generally entails making the choice that most reasonable persons would make in the circumstances. This standard is justified because in the cases in which it is used the surrogate does not have knowledge about how the patient might differ from most reasonable persons in respects that are relevant to the decision to be made.

In actual practice decision-making circumstances cannot be characterized as neatly as they have been in this discussion of these three principles. For example, sometimes an advance directive may give some, but not decisive, guidance, and so the surrogate must interpret it by using substituted judgment reasoning. In other cases, there may be no advance directive and a surrogate may have only incomplete knowledge of the patient's likely wishes; in this case substituted judgment reasoning must be supplemented by best interests reasoning to arrive at a treatment choice. The relative weight that should be given in these cases to advance directives versus substituted judgment reasoning or to substituted judgment versus best interests depends on the particular circumstances of the case and how decisive or indeterminate the prior principle is for the choice and thus to the extent to which the subordinate principle must be used to supplement it.

Controversies about Surrogate Decision Making

One of the main controversies in surrogate decision making concerns the degree of discretion surrogates should have in making decisions for incompetent patients. It is not possible to be precise about this and there will be disagreement in particular cases, but the standards for surrogate choice make it clear that surrogate discretion should not be unlimited. More specifically, surrogates should make decisions that are reasonably in accordance with the appropriate principle or standard for decision; "reasonable accord," however, does not mean that others, such as the healthcare providers, must always be convinced that a surrogate is making the best choice. The important point is that it is a mistake for healthcare providers to believe that they must do whatever the surrogate wants no matter how unreasonable that choice appears to be. The law reflects such limits as well; for example, DPAHCs typically do not give surrogates the authority to make choices that conflict with the patient's known wishes or fundamental interests.

A second controversy concerns conflicts between advance directives or substituted judgment standards and the best interests standard (Dworkin). Defenders of the best interests standard (Dresser) argue that an incompetent patient's prior wishes, especially when the patient is no longer aware of or identifies with them, should not be followed when they are in conflict with the current interests of the patient. An example would be a patient with pneumonia who needs antibiotics, is demented, and can no longer recognize friends or family members but enjoys his or her existence watching television and previously said that he or she would want no life-sustaining treatment in those circumstances. Here the patient's previous wishes expressed when the patient was competent appear to be in conflict with the patient's current interests. There is no consensus about how these conflicts should be resolved, although they are probably relatively uncommon.

A third controversy concerns whether and to what extent the interests of others justifiably can override the wishes or interests of the patient (Hardwig). Especially when patients are very near death, decisions about treatment may have little impact on their interests but a considerable impact on others, such as family members. Some have argued that in this case the standard patient-centered model for decision making should be set aside to recognize the needs and interests of family members.

dan w. brock

BIBLIOGRAPHY

Brock, Dan W. 1996. "What Is the Moral Authority of Family Members to Act as Surrogates for Incompetent Patients?" Milbank Quarterly 74(4): 599–619.

Buchanan, Allen E., and Brock, Dan W. 1989. Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge, Eng., and New York: Cambridge University Press.

Dresser, Rebecca. 1986. "Life, Death, and Incompetent Patients: Conceptual Infirmities and Hidden Values in the Law." Arizona Law Review 28: 373–405.

Dworkin, Ronald M. 1993. Life's Dominion: An Argument about Abortion, Euthanasia and Individual Freedom. New York: Knopf.

Hardwig, John. 1990. "What about the Family?" Hastings Center Report 20(2): 5–10.

Seckler, A.B.; et al. 1991. "Substituted Judgment: How Accurate Are Proxy Predictions?" Annals of Internal Medicine 115: 289–294.

Encyclopedia of Bioethics