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, 2013
PERSPECTIVE 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 — 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 fluctuates 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
PERSPECTIVE MAKING DECISIONS FOR PATIENTS WITHOUT SURROGATES Mechanisms and Sources of Authority for Substitute Decision Making. Mechanism or Situation Source of Authority aplied consent Instructional advance directive(living will Decided by the patien Physician Orders for Life-Sustaining Treatment(POLST) form Decided by the patient or surrogate Proxy advance directive( durable power of attorney) Guardian or conservator Appointed by the court -and even if that turns out not susceptible to the physicians developed. This solution should to be the case, casting a wide idiosyncratic treatment style. In not be resource-intensive, since net to include friends and pas- short, I believe that the risks as- almost all hospitals already have tors can at least provide evi- sociated with unilateral decision an ethics committee. dence of the patient's values and making by physicians outweigh Unfortunately, only five states treatment preferences the benefits have formally empowered exist- But for many patients, even We must strike an appropri- ing institutional multidiscipli improved preventive measures ate balance between a decision nary committees to make treat- won't work If we can't keep the maker who is responsive and can ment decisions for unrepresented patient from becoming unrepre- make timely decisions and a de- patients. The remaining states sented, who should make treat- cision maker who is independent have no clear legislative or regu ment decisions? Who should from the treating clinicians. latory guidelines, so in order to play the role of surrogate and Occupying this middle ground, I ensure transparency and fair pro apply the substituted-judgment would argue, is the ethics com- cess for unrepres and best-interest standards? To- mittee. These committees are typ- it is up to facilities to develop day, most decisions for the un- ically composed of at least a phy- their own institutional policies represented are made by physi- sician, a nurse, a social worker, So long as legally sanctioned cians alone, with no hospital a bioethicist, and a community mechanisms are nor oversight. This practice is under- member. The ethics committee inadequate, I believe that pro- standable. Physicians appreciate applies the same decision-mak- viders have both the duty and the risks, benefits, and alterna- ing standards as the individual the discretion to design these tives of various treatment op- physician decision maker. But the policies tions. And they can make quick committee has greater ability to The best approach would care- decisions iscover and diligently represent fully balance due process and But their responsiveness and the patient's wishes, to offer and efficiency. Clearly, we need a expertise notwithstanding, phy- consider various perspectives, and decision-making process that not sicians often do not make good to weigh both medical and non- only is accessible, quick, conve- surrogates. Indeed, most states medical considerations. nient. and cost-effective but also specifically prohibit patients from Ideally, this ethics committee provides the important safeguards selecting their physicians as sur- would be external to the health of expertise, neutrality, and care- rogates. Without a separate sur- care facility, like the committees ful deliberation. Ideally, the mech- rogate, the clinicians conflicts used for unrepresented patients anisms we develop would not of interest and biases related to in the New York and Texas men- only increase the quality of deci- disability, race, and culture all tal health systems. Many areas sions but also provide a greater remain unchecked. 5 In addition, of the country already have city. sense of social legitimac when physicians don't need to wide or regional ethics commit- Disclosure forms provided by the author explain their treatment decisions tees that could assume this role. are available with the full text of this article to another decision maker the But even an intramural committee at NEJM. org bases for those decisions would be a substantial safeguard, From the Health Law Institute. Haml less clearly articulated and m at least until novel solutions are University School of Law, Saint Paul, MI N ENGLJMED 369: 21 NEJM.ORG NOVEMBER 21, 2013 1977
n engl j med 369;21 nejm.org november 21, 2013 PERSPECTIVE 1977 Making Decisions for Patients without Surrogates — and even if that turns out not to be the case, casting a wide net to include friends and pastors can at least provide evidence of the patient’s values and treatment preferences. But for many patients, even improved preventive measures won’t work. If we can’t keep the patient from becoming unrepresented, who should make treatment decisions? Who should play the role of surrogate and apply the substituted-judgment and best-interest standards? Today, most decisions for the unrepresented are made by physicians alone, with no hospital oversight.3 This practice is understandable. Physicians appreciate the risks, benefits, and alternatives of various treatment options. And they can make quick decisions. But their responsiveness and expertise notwithstanding, physicians often do not make good surrogates.5 Indeed, most states specifically prohibit patients from selecting their physicians as surrogates. Without a separate surrogate, the clinician’s conflicts of interest and biases related to disability, race, and culture all remain unchecked.5 In addition, when physicians don’t need to explain their treatment decisions to another decision maker, the bases for those decisions are less clearly articulated and more susceptible to the physician’s idiosyncratic treatment style. In short, I believe that the risks associated with unilateral decision making by physicians outweigh the benefits. We must strike an appropriate balance between a decision maker who is responsive and can make timely decisions and a decision maker who is independent from the treating clinicians. Occupying this middle ground, I would argue, is the ethics committee. These committees are typically composed of at least a physician, a nurse, a social worker, a bioethicist, and a community member. The ethics committee applies the same decision-making standards as the individual physician decision maker. But the committee has greater ability to discover and diligently represent the patient’s wishes, to offer and consider various perspectives, and to weigh both medical and nonmedical considerations. Ideally, this ethics committee would be external to the health care facility, like the committees used for unrepresented patients in the New York and Texas mental health systems. Many areas of the country already have citywide or regional ethics committees that could assume this role. But even an intramural committee would be a substantial safeguard, at least until novel solutions are developed. This solution should not be resource-intensive, since almost all hospitals already have an ethics committee. Unfortunately, only five states have formally empowered existing institutional multidisciplinary committees to make treatment decisions for unrepresented patients. The remaining states have no clear legislative or regulatory guidelines,2 so in order to ensure transparency and fair process for unrepresented patients, it is up to facilities to develop their own institutional policies. So long as legally sanctioned mechanisms are nonexistent or inadequate, I believe that providers have both the duty and the discretion to design these policies. The best approach would carefully balance due process and efficiency. Clearly, we need a decision-making process that not only is accessible, quick, convenient, and cost-effective but also provides the important safeguards of expertise, neutrality, and careful deliberation. Ideally, the mechanisms we develop would not only increase the quality of decisions but also provide a greater sense of social legitimacy. Disclosure forms provided by the author are available with the full text of this article at NEJM.org. From the Health Law Institute, Hamline University School of Law, Saint Paul, MN. Mechanisms and Sources of Authority for Substitute Decision Making. Mechanism or Situation Source of Authority Emergency Implied consent Instructional advance directive (living will) Decided by the patient Physician Orders for Life-Sustaining Treatment (POLST) form Decided by the patient or surrogate Proxy advance directive (durable power of attorney) Appointed by the patient Default surrogate Appointed by the clinician Guardian or conservator Appointed by the court
PERSPECTIVE MAKING DECISIONS FOR PATIENTS WITHOUT SURROGATES l. Pope TM. Legal fundamentals of surrogate cision maker: who decides? Ann Intern Med 5. white DB, Jonsen A, Lo B. Ethical cha decision making. Chest2012141:107481.2007;147:3440 T Legal briefing: the un. 4. Caring for Georgia s unbefriended elders: unrepresented patients. Am J Crit Care 2012: befriended- making healthcare decisions views from the probate bench on the 2010 21: 202-7 2012;23(1):8496,23(2)17792 onset Statute. Atlanta: Georgia Appleseed, DOl: 10. 1056/NEJMp1308197 3.Whitedb,CurtisJr,WolfLe,etal.Life2013(http://www.gaappleseed.org/docs/Copyright@2013massachusetts support for patients without a surrogate de- caring- for-elders. pdf) - HISTORY。 F MEDICINE Railways, Industry, and Surgery -The Introduction of Risk Management Thomas schlich. MD rains sometimes derail, planes larly vulnerable to being blamed ever, at the end of the day, al crash, factories collapse for bad outcomes, since the link these strategies had their limita- yet we take trains and planes and between an operation and the tions. The power of hidden factors keep building factories. We have death of a patient is normally ob- and pure chance was too strong learned to live with risk. The no- vious and hard to deny. PirogovPirogov explicitly rejected the tion of risk is so common that it assumed that the reason why idea of using statistical calcula has been described as a defining surgeons had always had to cope tions to deal with this uncertainty feature of modern societies. Mod- with this problem was that out- because, he explained, the chance ern risk management has made comes in surgery were essentially element in probability calcula risk calculable and to some ex- beyond the practitioner's control. tions made them inapplicable to tent controllable. It is also a cen- Surgeons needed a certain"prac- the surgeon's day-to-day work. tral feature of medical interven- tical tact, "explained Pirogov, to In 1881 the German surgeon tion, most notably in surgery. judge whether or not to operate Richard von Volkmann suggested But when risk management was in a situation in which the odds that the traditional surgeon re- initially introduced into surgery, could neither be completely known sembled a farmer who could only in the 1870s, it was not only be- nor influenced. Such decisions cultivate his land and wait to see cause of developments in medi- had to take into account a whole how his harvest turned out, where cine(such as antisepsis) but also economy of risk, involving the as the modern surgeon, with anti- because of precedents in the rail- influences of both medical and sepsis at his disposal, resembled road and manufacturing arenas. nonmedical factors. Surgeons in- a manufacturer from whom the This new attitude toward risk led curred particularly high risk to public expected consistently high to great surgical interven- their reputations and future work, quality products. 1 Volkmann had tions and, I would argue, was at for example, when operating on adopted Joseph Lister's antisepsis least as important as antisepsis a patient of high social standing. a decade earlier and had become for the development of the field. Some patients, Pirogov advised, Germany,'s most influential pro- Before the late 19th century, should therefore be referred to ponent of the antiseptic method, surgeons had engaged in what colleagues. Others should be dis- an innovation that had engen- might be called the "management suaded from undergoing surgery dered an unprecedented expansion of chance. "A particularly instruc- altogether. Involving several doc- of surgery Operations whose per- tive example of this approach is tors in a given case could dis- formance would have been con- encapsulated in an 1854 essay by perse responsibility. One could sidered insane or criminal just 15 the Russian surgeon Nikolay also try to perform as many safe years earlier were now performed Pirogov, aptly titled"On Luck in operations as possible so that the routinely. The decisive advantage Surgery. "As Pirogov knew, sur- occasional failure would not spoil of antisepsis, however, was the geons had always been particu- one's mortality statistics. How- predictability of good results so 1978 N ENGL J MED 369: 21 NEJM. ORG NOVEMBER 21, 2013
PERSPECTIVE 1978 n engl j med 369;21 nejm.org november 21, 2013 1. Pope TM. Legal fundamentals of surrogate decision making. Chest 2012;141:1074-81. 2. Pope TM, Sellers T. Legal briefing: the unbefriended — making healthcare decisions for patients without proxies. J Clin Ethics 2012;23(1):84-96, 23(2):177-92. 3. White DB, Curtis JR, Wolf LE, et al. Life support for patients without a surrogate decision maker: who decides? Ann Intern Med 2007;147:34-40. 4. Caring for Georgia’s unbefriended elders: views from the probate bench on the 2010 amendments to the Surgical and Medical Consent Statute. Atlanta: Georgia Appleseed, 2013 (http://www.gaappleseed.org/docs/ caring-for-elders.pdf). 5. White DB, Jonsen A, Lo B. Ethical challenge: when clinicians act as surrogates for unrepresented patients. Am J Crit Care 2012; 21:202-7. DOI: 10.1056/NEJMp1308197 Copyright © 2013 Massachusetts Medical Society. Making Decisions for Patients without Surrogates HISTORY OF MEDICINE Railways, Industry, and Surgery — The Introduction of Risk Management Thomas Schlich, M.D. Trains sometimes derail, planes crash, factories collapse — yet we take trains and planes and keep building factories. We have learned to live with risk. The notion of risk is so common that it has been described as a defining feature of modern societies. Modern risk management has made risk calculable and to some extent controllable. It is also a central feature of medical intervention, most notably in surgery. But when risk management was initially introduced into surgery, in the 1870s, it was not only because of developments in medicine (such as antisepsis) but also because of precedents in the railroad and manufacturing arenas. This new attitude toward risk led to greater use of surgical interventions and, I would argue, was at least as important as antisepsis for the development of the field. Before the late 19th century, surgeons had engaged in what might be called the “management of chance.” A particularly instructive example of this approach is encapsulated in an 1854 essay by the Russian surgeon Nikolay Pirogov, aptly titled “On Luck in Surgery.” As Pirogov knew, surgeons had always been particularly vulnerable to being blamed for bad outcomes, since the link between an operation and the death of a patient is normally obvious and hard to deny. Pirogov assumed that the reason why surgeons had always had to cope with this problem was that outcomes in surgery were essentially beyond the practitioner’s control. Surgeons needed a certain “practical tact,” explained Pirogov, to judge whether or not to operate in a situation in which the odds could neither be completely known nor influenced. Such decisions had to take into account a whole economy of risk, involving the influences of both medical and nonmedical factors. Surgeons incurred particularly high risk to their reputations and future work, for example, when operating on a patient of high social standing. Some patients, Pirogov advised, should therefore be referred to colleagues. Others should be dissuaded from undergoing surgery altogether. Involving several doctors in a given case could disperse responsibility. One could also try to perform as many safe operations as possible so that the occasional failure would not spoil one’s mortality statistics. However, at the end of the day, all these strategies had their limitations. The power of hidden factors and pure chance was too strong. Pirogov explicitly rejected the idea of using statistical calculations to deal with this uncertainty because, he explained, the chance element in probability calculations made them inapplicable to the surgeon’s day-to-day work. In 1881 the German surgeon Richard von Volkmann suggested that the traditional surgeon resembled a farmer who could only cultivate his land and wait to see how his harvest turned out, whereas the modern surgeon, with antisepsis at his disposal, resembled a manufacturer from whom the public expected consistently highquality products.1 Volkmann had adopted Joseph Lister’s antisepsis a decade earlier and had become Germany’s most influential proponent of the antiseptic method, an innovation that had engendered an unprecedented expansion of surgery. Operations whose performance would have been considered insane or criminal just 15 years earlier were now performed routinely. The decisive advantage of antisepsis, however, was the predictability of good results so