Making medical decisions for patients without surrogates.

P who are decisionally incapacitated but haven’t provided advance directives for their health care and have no health care surrogates — sometimes called the “unbefriended” or “unrepresented” — are some of the most powerless and marginalized members of society. Most of the unrepresented are elderly, homeless, mentally disabled, or socially alienated. Yet medical decision making for these vulnerable patients often lacks even minimally sufficient safeguards and protections. Consequently, health care decisions made on their behalf are at risk of being biased, arbitrary, corrupt, or careless. Most U.S. states have similar processes for making treatment decisions on behalf of patients without capacity (see table).1 In an emergency, clinicians can treat patients without their consent. For nonemergency situations, patients may have completed a Physician Orders for Life-Sustaining Treatment (POLST) form or advance directive with instructions that clearly address their current circumstances, or they may have appointed a health care agent or durable power of attorney. But most patients have taken neither of these steps, so 43 states have “default surrogate” laws specifying who can make decisions. In most of these states, a spouse is designated first, followed by adult children, parents, siblings, and often other relatives and friends. None of these decision-making mechanisms, however, can help the unrepresented. They have no POLST forms, no advance directives, no agents, and no default surrogates. And the unrepresented are a big group — including some elderly and mentally disabled patients, as well as many who are homeless or socially isolated. In many states, lesbian, gay, bisexual, or transgendered patients may have same-sex partners who could serve as decision makers but are not legally recognized as surrogates. Experts estimate that 3 to 4% of the 1.3 million people living in U.S. nursing homes2 and 5% of the 500,000 per year who die in intensive care units3 are unrepresented. Who can consent to treatment on behalf of these unrepresented patients? In almost every state, the only legally authorized decision maker is the court-appointed guardian.2 But that solution is usually inadequate, for several reasons: the judicial process is too slow and cumbersome relative to the need for treatment decisions, it’s expensive, and guardians often lack time, given their heavy caseloads, to learn about the patient. The biggest problem, though, is that guardians are often unavailable.2 Most court-appointed guardians are family members, but unrepresented patients have no available family. Professional guardians are unwilling to serve if the patient has no resources. In many states, not even the use of public guardians is practicable. For example, in 2010, Georgia enacted a new medical-guardian statute specifically to help the unrepresented, but a recent survey of Georgia probate judges indicates that the law is ineffective because there’s a shortage of people willing to serve.4 So what happens to unrepresented patients when there is nobody authorized to consent to medical decisions? Clinicians exercise substituted judgment to the extent that that’s possible. Otherwise, they aim to make decisions that are in the patient’s best interest. But when clinicians do not hear the “voice” of the patient, they may provide treatment discordant with his or her preferences, values, and best interest.5 We can do better. Most model and institutional policies start with prevention, by promoting measures that aim to keep patients from becoming unrepresented in the first place. That means, first of all, protecting and promoting patients’ ability to make their own health care decisions to the greatest extent possible. Capacity is not all or nothing; it f luctuates and can often be preserved through “supported decision making,” such as assisting the person to make and communicate preferences and choices. Second, while patients still have capacity, they should be helped to complete an advance directive appointing an agent and an alternate agent, so that when they really do lose capacity they will have someone to make treatment decisions. Third, in cases in which no agent or default surrogate is initially available, a thorough and diligent search should be conducted. Often, a surrogate can eventually be found2