PERSPECTIVE MAKING DECISIONS FOR PATIENTS WITHOUT SURROGATES Making Medical Decisions for Patients without Surrogates Thaddeus Mason Pope, J.D., Ph D. eople who are decisionally have no POLST forms, no ad- vey of Georgia probate judges incapacitated but haven,'t vance directives, no agents, and indicates that the law is ineffec- provided advance directives for no default surrogates. And the tive because there's a shortage their health care and have no unrepresented are a big group of people willing to serve. 4 health care surrogates- some- including some elderly and So what happens to unrepre- times called the "unbefriended"mentally disabled patients, as sented patients when there is or "unrepresented"-are some well as many who are homeless nobody authorized to consent of the most powerless and mar- or socially isolated. In many to medical decisions? Clinicians ginalized members of society. states, lesbian, gay, bisexual, or exercise substituted judgment to Most of the unrepresented are transgendered patients may have the extent that thats possible elderly, homeless, mentally dis- same-sex partners who could Otherwise, they aim to make de abled, or socially alienated. Yet serve as decision makers but are cisions that are in the patient' s medical decision making for not legally recognized as surro- best interest. But when clinicians these vulnerable patients often gates. Experts estimate that 3 to do not hear the " voice"of the pa lacks even minimally sufficient 4% of the 1.3 million people liv- tient, they may provide treat- safeguards and protections. ing in U.S. nursing homes and ment discordant with his or her Consequently, health care deci- 5% of the 500,000 per year who preferences, values, and best in sions made on their behalf are die in intensive care units are terest.5 at risk of being biased, arbitrary, unrepresented We can do better. Most mod corrupt, or careless Who can consent to treat- el and institutional policies start Most U.S. states have similar ment on behalf of these un- with prevention, by promoting processes for making treatment represented patients? In almost measures that aim to keep pa decisions on behalf of patients every state, the only legally au- tients from becoming unrepre without capacity(see table). 1 In an thorized decision maker is the sented in the first place. That emergency, clinicians can treat court-appointed guardian. 2 But means, first of all, protecting patients without their consent. that solution is usually inade- and promoting patients'ability For nonemergency situations, quate, for several reasons: the to make their own health care patients may have completed a judicial process is too slow and decisions to the greatest extent Physician Orders for Life-Sus- cumbersome relative to the need possible. Capacity is not all or taining Treatment(POLST) form for treatment decisions, it's ex- nothing; it fluctuates and can or advance directive with in- pensive, and guardians often lack often be preserved through"sup- structions that clearly address time, given their heavy case- ported decision making, "such as their current circumstances, or loads, to learn about the patient. assisting the person to make and they may have appointed a health The biggest problem, though, is communicate preferences and care agent or durable power of that guardians are often un- choices. Second, while patients attorney. But most patients have available. 2 Most court-appointed still have capacity, they should taken neither of these steps, so guardians are family members, be helped to complete an advance 43 states have "default surro. but unrepresented patients have directive appointing an agent and gate"laws specifying who can no available family. Professional an alternate agent, so that when ake decisions. In most of these guardians are unwilling to serve they really do lose capacity they states, a spouse is designated if the patient has no resources. will have someone to make treat- first, followed by adult children, In many states, not even the use ment decisions. Third, in cases parents, siblings, and often other of public guardians is practicable. in which no agent or default relatives and friends For example, in 2010, Georgia surrogate is initially available, a None of these decision-mak- enacted a new medical-guardian thorough and diligent search ing mechanisms, however, can statute specifically to help the should be conducted. Often,a help the unrepresented. They unrepresented, but a recent sur- surrogate can eventually be found2 1976 N ENGL J MED 369: 21 NEJM. ORG NOVEMBER 21, 2013PERSPECTIVE 1976 n engl j med 369;21 nejm.org november 21, 2013 Making Medical Decisions for Patients without Surrogates Thaddeus Mason Pope, J.D., Ph.D. Making Decisions for Patients without Surrogates People who are decisionally incapacitated but haven’t provided advance directives for their health care and have no health care surrogates — some￾times called the “unbefriended” or “unrepresented” — are some of the most powerless and mar￾ginalized members of society. Most of the unrepresented are elderly, homeless, mentally dis￾abled, or socially alienated. Yet medical decision making for these vulnerable patients often lacks even minimally sufficient safeguards and protections. Consequently, health care deci￾sions 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-Sus￾taining Treatment (POLST) form or advance directive with in￾structions 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 surro￾gate” 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-mak￾ing mechanisms, however, can help the unrepresented. They have no POLST forms, no ad￾vance 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 surro￾gates. Experts estimate that 3 to 4% of the 1.3 million people liv￾ing 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 treat￾ment on behalf of these un￾represented patients? In almost every state, the only legally au￾thorized decision maker is the court-appointed guardian.2 But that solution is usually inade￾quate, for several reasons: the judicial process is too slow and cumbersome relative to the need for treatment decisions, it’s ex￾pensive, and guardians often lack time, given their heavy case￾loads, to learn about the patient. The biggest problem, though, is that guardians are often un￾available.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 sur￾vey of Georgia probate judges indicates that the law is ineffec￾tive because there’s a shortage of people willing to serve.4 So what happens to unrepre￾sented 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 de￾cisions that are in the patient’s best interest. But when clinicians do not hear the “voice” of the pa￾tient, they may provide treat￾ment discordant with his or her preferences, values, and best in￾terest.5 We can do better. Most mod￾el and institutional policies start with prevention, by promoting measures that aim to keep pa￾tients from becoming unrepre￾sented 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 fluctuates and can often be preserved through “sup￾ported 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 treat￾ment 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