Surrogate Decision Making

A surrogate is a statutorily designated health care decider or an informally identified person, such as a close family member or friend. The more informal the appointment, the less likely the surrogate will be able to refuse life-sustaining treatment, especially in states with very restrictive laws. If the patient is incapacitated and no advance directive exists, some other person or persons must provide the direction (either a loved one or the medical staff).

Most hospitals and physicians accept consent to provide care from a spouse, an adult child, a close friend, a clergy member, or even a distant and uninvolved relative, although in most states, none of these persons is legally empowered to consent on a patient's behalf without being appointed by a court. However, accepting the judgment of a close relative or friend over that of a distant relative or total stranger makes practical and ethical sense. Thus, a decision agreed on by hospital, physician, and family almost always constitutes the basis for providing care, although it may not be legally adequate if challenged.

Elderly patients without family or close friends may receive a court-appointed guardian, who is often disinterested and serves a perfunctory role. Some institutions and jurisdictions are experimenting with the appointment of public guardians and patient advocates, which may prove appropriate and cost-effective.

When surrogates attempt to refuse treatment by deciding to withhold or withdraw interventions (an often articulated distinction without any substantial legal or ethical difference), legal concerns increase because of the possibility of death. The initial questions in these circumstances are (1) Who decides? (2) On what basis is the decision made? and (3) What possibilities exist for appeal and review? Answers vary widely among the states. In New Jersey hospitals, for example, if an ethics or prognosis committee determines that the prognosis is hopeless (and, in the case of elderly residents in long-term care, the state Office of the Ombudsman determines that the decision does not constitute abuse), a specially appointed guardian may opt to withhold treatment. Conversely, in New York, surrogates who have not been appointed by the patient have very limited ability to withhold care unless the patient has addressed a similar circumstance when capacitated and has left explicit instructions to be followed. The problem is that these practices assume that continued existence is the desired state. Under certain circumstances, however, permitting death is not incompatible with a patient's best interest nor with the state's usual interest in preserving life.

Unless there is a durable power of attorney for health care, the choice of a surrogate may be unclear. Once identified, the surrogate bases a decision on one of three standards, in the following hierarchy:

• Explicit directive, ie, the instructions expressed by the patient when capacitated
• Substituted judgment, ie, inferences about what the patient would likely want in this situation based on what is known about his prior behavior and decision making
• Best interest, ie, what the surrogate and health care team believe is best for the patient

Explicit directive, the first standard, is usually determined by a written document (eg, a living will) but can also be fulfilled by discussions with the patient as reported by the surrogate or others, particularly by close family members. Statements to health care practitioners, especially when documented in the medical chart, can also be important in determining the patient's preferences.

Substituted judgment, used when no explicit directives exist, poses various questions to try to discern what the patient would have wanted. What sort of person was this patient when capacitated? What was his lifestyle and pattern of decision making? What did he find rewarding or unacceptable? How did he evaluate the quality of life and define a meaningful existence? How did he feel about diminished capacity, dependence, and confinement?

Finally, best interest is resorted to when the patient's history, wishes, and values are unknown. This judgment is informed by the clinical evaluations of the health care team about prognosis and the likely outcome of treatment, some notion of what a reasonable person in the patient's situation would want, and an evaluation of the benefits and burdens of care in maximizing the patient's comfort and function. Especially when making decisions based on substituted judgment and best interest, the surrogate must not confuse the patient's perspective of quality of life with some arbitrary judgment about the value of the patient's life to others.

In making life-or-death decisions for the incapacitated patient, the proxy or surrogate may feel unsupported or even abandoned by the physician or by family members. Making decisions for another, especially life or death ones, can be anguishing. Ideally, the physician's responsibility of informing and supporting the patient would be transferred to the surrogate. However, the physician-surrogate relationship is sometimes strained, due in part to the physician's notion that family members cause trouble after the patient has died, the complexity and fragmentation of care, and the physician's discomfort with decisions that refuse care and permit death. Even when one member of a family is chosen by the patient to be the legally appointed proxy, the family dynamic has an independent existence. If a parent has appointed one child, that person must still relate to the others in the family and circle of friends. Family dynamics among siblings and between generations may be played out in the context of old grievances and present fears and may require support to resolve conflicts.

Tensions and disagreements between and among physicians, nursing staff, surrogate, and family members may be managed and resolved through mediation leading to consensus. The mediator, a bioethics consultant or ethics committee member, informs the surrogate and family of their options, empowers the surrogate to question the health care team's judgment, and ensures that all parties are heard. Once a consensus on the best plan of care is reached, especially if that consensus leads to withdrawing or withholding care, the mediator ensures that everyone is as comfortable as possible with the plan and that the plan is carried out according to the agreement. Finally, the mediator follows up to ensure that the family is comfortable with the outcome and that health care practitioners can use this experience in future cases.

In mediation of bioethical disputes, the process is as important as the ultimate decision. The way in which issues are explored and the fact that the health care team and family members reach a consensus are enormously helpful to everyone involved. As conflict is resolved, the surrogate feels more comfortable with his decision.