Factors for patients to ponder when choosing a surrogate

Scenario: Should the closest relative always be chosen to be surrogate decision-maker? What other factors are important in selecting someone to make medical decisions when you no longer can?

Reply: Everyone has the right to decline medical care or life-sustaining treatment. However, during periods of illness and at the end of life, patients often lose the capacity to accept or decline medical treatment, and a substitute decision-maker is sought. Choosing the “best surrogate” begins with defining “surrogate.” The term is ambiguous. “Surrogate” sometimes refers to the person designated by the patient to make decisions for the patient. We will call this “health care agent,” but a variety of other terms is used, including durable power of attorney for health care and health care proxy, which is an equally ambiguous term.

“Surrogate” also may refer to the legal default decision-maker, whom we will call the “next of kin,” or to any substitute decision-maker. How these words are used is defined in the laws of various states, and their definitions vary. Papers on the subject also are inconsistent in their usage.

In principle, substitute decision-makers should follow the substituted judgment standard when possible. That is, a substitute is supposed to make decisions as the incapacitated patient would have made them if he or she had capacity. Advance directives attempt to allow patients to state preferences about decisions that may become necessary in a hypothetical future when they no can longer speak for themselves.

Generally, these documents are circumscribed in one way or the other. In many states, for example, they are limited to patients who are terminally ill. The documents also are limited, in part, because studies have shown that patient preferences for life-sustaining care change over time, but not in a consistent or predictable way. Therefore, the health care agent has a key advantage in that he or she can make decisions that take into account the current clinical situation within the context of the patient’s previously expressed values and preferences.

Data show that substitute decision-makers are susceptible to bias in their decision-making based on their own values and treatment preferences. Some substitutes may have difficulty choosing to forgo life-sustaining treatment due to their own emotional distress and difficulty coping with the potential loss of a loved one. Although substitutes are not always accurate in predicting patient treatment preferences, their predictions are more accurate than those of physicians.

Furthermore, in many states the health care agent has more legal authority than the next of kin. In Maryland, for example, the health care agent can make any medical decision that the patient would have made, whereas the next of kin can only authorize the withholding of life-sustaining treatment in certain, limited situations.

In discussing the “best surrogate,” we’ll refer to the health care agent designated by the patient, because the default decision-maker is generally specified by the relevant local law. An agent could be the next of kin or another close family member, but may be anyone older than 18 who is capable. Characteristics often sought in health care agents include availability and willingness to be an agent, competency in decision-making, similarity to patient in attitudes and values, and knowledge of patient preferences.

Patients may choose a professional person, such as a social worker or lawyer, or someone with knowledge of the health care system, believing this person will better understand the relevant medical information and make more-informed decisions. Patients also may consider the emotional burden of decision-making on the substitute, because enduring harm has been reported among some substitute decision-makers, often more severe in those who were asked to make key decisions and then were left with guilt as well as grief.

On the other hand, patients can feel obligated to choose someone who is the seemingly obvious choice or who expects to be the decision-maker. The next of kin may be a poor choice as a health care agent, for example, if that person is estranged from the patient, is not willing or available to serve as the health care agent, or the patient does not believe that person will follow his or her advance directives and make decisions consistent with his or her values.

Physicians should urge all adult patients — when they still have capacity to make medical decisions — to designate a health care agent. This is true regardless of the patient’s age. Designating one person, then a back-up agent, is preferable to naming two or more people. Once the patient has identified the person he or she wishes to serve this role, permission should be sought in careful conversation. Ensuring that the potential decision-maker is comfortable fulfilling this role and actuating the patient’s preferences is the second set of important characteristics to look for in a health care agent.

Studies have shown that family members feel more confident in their ability to act as a substitute decision-maker if they have been a substitute before and if they have had prior conversations with the patient about their treatment preferences. Therefore, patients should be encouraged to discuss their goals of care with their health care agents. The decisions made by the substitute may be more “accurate,” and the emotional burden decreased, if agents feel they are helping to carry out a patient’s wishes rather than deciding when to allow the death of a loved one.

Melissa D. Morgan-Gouveia, MD, clinical fellow, Division of Geriatric Medicine and Gerontology, Johns Hopkins University School of Medicine, Baltimore

Thomas E. Finucane, MD, professor, Division of Geriatric Medicine and Gerontology, Johns Hopkins University School of Medicine, Baltimore