During morning clinic, one of your older patients arrives for his appointment with his son. This particular patient had previously attended his appointments alone, but in the past year he has been arriving with a family member. Today, his son tells you that his dad, who lives alone, has been having more trouble remembering to take his medication and to pay his bills. He and his siblings have been discussing the patient’s willingness to move into a nearby assisted living facility. The patient asks you how his kids can be helpful when he has trouble making health care decisions for himself.
Facilitating deciding for others is a central part of health care for many clinicians. Although pediatricians and geriatricians are more likely to have to engage family members to help make health care decisions for some of their patients, clinicians in all specialties should understand the principles and procedures for deciding on behalf of others in an ethically strong way.
First and foremost is that adult patients make decisions on their own behalf unless they lack decision-making capacity (DMC) or they voluntarily choose to cede that decision-making authority to another person. DMC is a determination by a health care professional about a patient’s ability to make a specific health care decision at a particular point in time. Patients should be presumed to possess DMC unless there is a compelling reason to conclude otherwise. Moreover, DMC determinations should not be based on the content of the decision, but rather on the patient’s decision-making process. For example, a patient should not be presumed to lack DMC simply because they have chosen to decline a beneficial treatment contrary to the clinician’s recommendation. However, if the patient is significantly impaired by intoxication and chooses to decline a particular intervention, it may not be unreasonable to question their decision-making ability.
Although critically assessing DMC for the broad range of health care decisions is beyond the scope of this article, clinicians should appreciate some general principles about the process. Patients with DMC should be able to understand the relevant clinical information of the proposed decision, including its risks, benefits, and alternatives; appreciate the consequences of the decision as it relates to them specifically; be able to rationally manipulate the provided information; and clearly communicate a choice.
It is no small matter to decide that a patient lacks DMC as that can portend significant consequences to the patient’s autonomy. At the same time, allowing patients to make decisions when they lack to capacity can be harmful as well. When patients lack DMC, an authorized individual (often referred to as a surrogate decision maker) must make decisions on their behalf. There is a hierarchy that determines which individual has priority, and this is usually based on state law for clinicians who practice in non-federal health care settings. Although the hierarchy will undoubtedly vary by state (you should consult your local counsel or ethics consultation resources for specifics), the prioritized list of available surrogate decision-makers usually starts with a durable power of attorney for health care (ie, health care proxy), then legal guardian, spouse, adult child, parent, sibling, or another family member. Some states and jurisdictions allow for someone not on the specific hierarchy of surrogates (eg, an uncle, niece, close friend) to serve as an authorized decision maker if there is no one else available and they can demonstrate that they know the patient and can represent their best interests. Finally, although a court-appointed guardian could usually be appointed, in practice, this process is often costly and time consuming and impractical for time-sensitive decisions.
When there is no surrogate available on the hierarchy, most states have a legal process by which the health care team can make timely health care decisions on behalf of the patient with varying levels of oversight. These procedural protections help ensure that these vulnerable “unbefriended” patients are not exploited. This process often includes identifying legal documents that can represent the patient’s prior known preferences, including relevant health record documentation, advance directives, living wills, and physician orders for life sustaining treatments (POLSTs).
Regardless of who the ultimate surrogate decision makers are, they all have certain ethical responsibilities. These decision makers are not free to make health care decisions however they want or simply to meet their own needs, but rather are obligated to decide based on what the patient would have wanted if it is known. This is referred to as “substituted judgment” and can often be found in the health care documents specified above. When there is insufficient knowledge or documentation of a patient’s preferences for care, surrogates must base their decisions on “best interests” reasoning, which essentially translates to what they believe is best for that patient at that time. Finally, even when a patient lacks DMC, the surrogate and the clinician should seek to involve the patient in as much of the decision-making process as possible. This can assist the surrogate to decide as well as to respect the patient’s ability to participate in health care decisions, even if that ability is diminished.
Strong ethical practices for surrogate decision making help to maximize patients’ bodily autonomy by enhancing their ability to speak for themselves even as illness infringes on their ability to do so. When patients are unable to exercise their rights any longer, they depend on family, friends, and sometimes health care professionals to do the right thing and make those decisions for them based on what the patient would have wanted if known, and if not known, then on their best interest.
David J. Alfandre, MD, MSPH, is a health care ethicist and an associate professor in the Department of Population Health at the NYU School of Medicine in New York. The views expressed in this article are those of the author and do not necessarily reflect the position or policy of the VA National Center for Ethics in Health Care or the US Department of Veterans Affairs.