Minnesota Medicine April 2011 : Page 43

| clinical & health affairs Surrogate Decision-Making and the Need for Advance Care Planning issues raised by the al Barnes Case By Keith M. Swetz, M.D., Mark G. Kuczewski, Ph.D., and Paul S. Mueller, M.D., M.P .H. n Decisions regarding health care are increasingly difficult to make, especially as patients live longer and with more medical comorbidities. The case of Al Barnes, a man with advanced dementia who recently died in a Minnesota hospital despite months of aggressive care, illustrates the frequently encountered challenges that go along with making decisions about medical care for patients who lack the ability to do so themselves. These challenges can lead surrogates to opt for treatments that are efficacious but may be burdensome and inconsistent with the values, goals, or preferences the patient previously expressed ei-ther orally or in a written advance directive. In this article, we describe approaches that may help those who must make decisions for patients who cannot do so themselves and the merits and limitations of advance care planning. n February 14, 2011, Al Barnes, an 85-year-old man with advanced dementia, died at Meth-odist Hospital in St. Louis Park after several months of aggressive treatment. The ethical and legal aspects of his case were on display in the media dur-ing the months prior to his death. Because Mr. Barnes lacked decision-making capacity, the principle issue in his case was whether his wife, Lana Barnes, was acting appropriately as his surrogate decision-maker; that is, whether she was making de-cisions in accordance with his previously expressed wishes. Mrs. Barnes requested continued aggressive medical treat-ments for her husband including hemodialysis and mechani-cal ventilation, stating that he would want such treatments if he had any chance of survival. 1 However, Mr. Barnes’s sons from a previous marriage reported that Mrs. Barnes’s request was inconsistent with their father’s previously stated wishes. 2 Mr. Barnes had an advance directive, which was executed more than 15 years ago. This discrepancy, as well as the behavior of Mrs. Barnes, which was perceived as intrusive and obstructionist by hospital staff, prompted a review of the case in Hennepin County Pro-bate Court. There, matters were further complicated when evi-dence suggesting that Mrs. Barnes tampered with Mr. Barnes’s O 1993 health care directive surfaced. 2 As a result of this discov-ery, Mrs. Barnes was removed as Mr. Barnes’s surrogate deci-sion-maker and the court appointed a surrogate. 3 Ultimately, despite ongoing aggressive care, Mr. Barnes died without his court-appointed surrogate having to make the decision to withdraw life-sustaining treatments. 1 A Complex Process Clinicians frequently care for patients who, like Mr. Barnes, have advanced illnesses that requires life-sustaining treatments and lack decision-making capacity. In these situations, physi-cians must work with and rely on others to make judgments regarding their patient’s medical care. Given the fact that the population of the United States is aging and given that medi-cal technologies are increasingly successful in prolonging life, it is likely that physicians will increasingly find themselves in situations where surrogates are making decisions about their loved ones’ care. Invariably, the issues raised by these situations are complex and difficult. Although aggressive treatments can be directed at most medical conditions, the potential benefits of those treat-ments may be marginal, and they often come with the risk of diminished quality of life. In addition, they may excessively april 2011 • Minnesota Medicine | 43

Surrogate Decision-Making And The Need For Advance Care Planning: Issues Raised By The Al Barnes Case

Keith M. Swetz

Decisions regarding health care are increasingly difficult to make, especially as patients live longer and with more medical comorbidities. The case of Al Barnes, a man with advanced dementia who recently died in a Minnesota hospital despite months of aggressive care, illustrates the frequently encountered challenges that go along with making decisions about medical care for patients who lack the ability to do so themselves. These challenges can lead surrogates to opt for treatments that are efficacious but may be burdensome and inconsistent with the values, goals, or preferences the patient previously expressed either orally or in a written advance directive. In this article, we describe approaches that may help those who must make decisions for patients who cannot do so themselves and the merits and limitations of advance care planning.<br /> <br /> On February 14, 2011, Al Barnes, an 85-year-old man with advanced dementia, died at Methodist Hospital in St. Louis Park after several months of aggressive treatment. The ethical and legal aspects of his case were on display in the media during the months prior to his death. Because Mr. Barnes lacked decision-making capacity, the principle issue in his case was whether his wife, Lana Barnes, was acting appropriately as his surrogate decision-maker; that is, whether she was making decisions in accordance with his previously expressed wishes.<br /> <br /> Mrs. Barnes requested continued aggressive medical treatments for her husband including hemodialysis and mechanical ventilation, stating that he would want such treatments if he had any chance of survival.1 However, Mr. Barnes’s sons from a previous marriage reported that Mrs. Barnes’s request was inconsistent with their father’s previously stated wishes.2 Mr. Barnes had an advance directive, which was executed more than 15 years ago.<br /> <br /> This discrepancy, as well as the behavior of Mrs. Barnes, which was perceived as intrusive and obstructionist by hospital staff, prompted a review of the case in Hennepin County Probate Court. There, matters were further complicated when evidence suggesting that Mrs. Barnes tampered with Mr. Barnes’s 1993 health care directive surfaced.2 As a result of this discovery, Mrs. Barnes was removed as Mr. Barnes’s surrogate decision- maker and the court appointed a surrogate.3 Ultimately, despite ongoing aggressive care, Mr. Barnes died without his court-appointed surrogate having to make the decision to withdraw life-sustaining treatments.1<br /> <br /> A Complex Process<br /> <br /> Clinicians frequently care for patients who, like Mr. Barnes, have advanced illnesses that requires life-sustaining treatments and lack decision-making capacity. In these situations, physicians must work with and rely on others to make judgments regarding their patient’s medical care. Given the fact that the population of the United States is aging and given that medical technologies are increasingly successful in prolonging life, it is likely that physicians will increasingly find themselves in situations where surrogates are making decisions about their loved ones’ care.<br /> <br /> Invariably, the issues raised by these situations are complex and difficult. Although aggressive treatments can be directed at most medical conditions, the potential benefits of those treatments may be marginal, and they often come with the risk of diminished quality of life. In addition, they may excessively Burden the patient and his or her family because of frequent hospitalizations, pain, and high costs.<br /> <br /> Ideally, surrogates would weigh the benefits and downsides of those treatments in the context of the patient’s expressed desires before deciding how to proceed. But often, circumstances complicate this already-difficult task. In some situations, bereaved family members perceive that the quality of care being provided for their loved one is poor and understandably are frustrated.4 In others, families tell health care providers to “do everything possible” to sustain life more because of the distress they feel than because they are attempting to articulate the patients’ health-carerelated goals, values, and preferences.5,6 As in the Barnes case, the appropriateness of the surrogate’s decisions may be questioned.<br /> <br /> In all cases, reconciling the surrogate’s decisions with the perceived authentic wishes of the patient ought to be the goal of everyone involved. However, this is often challenging, as the process of surrogate decision-making is highly nuanced and the resulting judgments need to be contextually informed.6 Here, we offer practical suggestions on how to approach and manage these situations.<br /> <br /> Planning Ahead<br /> <br /> Research suggests that when patients’ values, goals, and wishes regarding medical treatment are respected, they receive better care, particularly at the end of life.7,8 Respect for patient autonomy requires clinicians to make sure that patients are allowed to articulate their wishes regarding what they want in terms of care: Do they want their providers to do everything possible to keep them alive? Do they just want to be kept comfortable until the end? Patients should be encouraged not only to articulate but also to document their values, goals, and wishes and to share the resulting documents with appropriate parties (loved ones, clinicians, etc).9 This process of advance care planning should be flexible and continuous as patients’ health and circumstances are everchanging.<br /> <br /> Advance directives are one component of advance care planning.9,10 Both instructional directives (such as the living will) and proxy directives (such as the durable power of attorney for health care document) commonly include the appointment of a surrogate decision-maker.9 This designated surrogate is charged with assuring that a patient’s wishes as articulated during the advance care planning process are carried out in the event the patient is incapable of expressing those wishes. In addition, Minnesota has a POLST (Physician/Provider Orders for Life-Sustaining Treatment) initiative to assist patients with life-limiting or life-threatening illnesses in making their end-of-life preferences clear to their surrogate.11 More information and resources can be found at www.polstmn.org.<br /> <br /> Options When Wishes Are Unclear<br /> <br /> Despite the potential benefits of having an advance directive and the related discussion, the number of people completing advance directives remains low.9 As a result, many patients’ preferences regarding aggressive and life-sustaining treatments may be unknown or unclear. Physicians, therefore, often find themselves working with surrogate decision-makers who must guess what the patient would want. Physicians should be aware of a number of concepts that may be useful in such situations.<br /> <br /> One is “substituted judgment.” The idea is to have the surrogate articulate what he or she believes the patient would want in a given situation (Table). As suggested in the Quinlan decision12 and by Quill,13 surrogates should ask themselves, “If the patient could wake up for 15 minutes and understand his or her condition fully, what would he or she tell you to do?” This question can help a surrogate focus on the patient’s values, goals, and preferences— not theirs. It may be especially helpful when a surrogate’s decisions appear to be incongruent with how the patient, when he or she was capable of making decisions, lived his or her life or interpreted his or her illness and finitude.<br /> <br /> Another approach is to apply the “best-interest standard,” which attempts to have the surrogate decision-maker focus on what a “rational being,” a group of knowledgeable or interested persons, or society would perceive as a good outcome for the patient.<br /> <br /> Yet another useful concept is that of “substituted interests.”14 With substituted interests, the patient’s story or narrative, as expressed by the surrogate, is emphasized. Clinicians ask the surrogate about the patient—their hopes, beliefs, interests—rather than about what the patient might do in a given medical situation. The Model presupposes that surrogates may not know details about patients’ specific medical wishes but that they likely know much about the patient as a person. The substituted-interests approach is broadly applicable, evokes feelings of empathy in the surrogate, is less stressful for surrogates because it does not require them to focus on a menu of treatment options, and emphasizes shared decision-making between clinicians and surrogates. As a result, there is a higher likelihood of arriving at a care plan that truly reflects the patient’s authentic wishes and not the surrogate’s.14<br /> <br /> Preempting Conflict<br /> <br /> The case of Al Barnes clearly illustrates that when patients are incapable of voicing their preferences and have not completed an advance directive or POLST form, there is a potential for conflict among possible surrogates. In the Barnes case, Lana Barnes, the patient’s spouse and surrogate, expressed what she perceived as Mr. Barnes’s wishes about his care. Mr. Barnes’s sons, however, did not believe the decisions made by Mrs. Barnes reflected what their father would have wanted.2,3 Recalling a patient’s wishes and employing substituted judgment based on an interpretation of that recollection means the patient’s best interests may vary among potential surrogates and interested persons.15 Most states have laws establishing who becomes the surrogate decision-maker if the patient has no advance directive. But these laws vary. For example, Minnesota law does not specify a hierarchy, whereas Florida law does (eg, spouse followed by blood relatives). Furthermore, some states restrict surrogate decision-making regarding life-sustaining treatments such as artificial hydration and nutrition.<br /> <br /> In cases where there is conflict among potential surrogates, help from social services or legal services, as well as consultations with members of a hospital’s ethics committee may be helpful. It is a rare case in which court appointment of a guardian is sought as an option for clarifying what is in the patient’s best interest and resolving the conflict.16,17<br /> <br /> The Case for Advance Care Planning<br /> <br /> Studies have shown that patients who engage in advance care planning with their providers and surrogates are more likely to have decisions made in accordance with their preferences.7 For example, cancer patients who discuss care preferences with their oncologists are more likely to receive end-of-life care that is congruent with their preferences,18 whereas those who do not have such discussions receive “aggressive” care and report worse quality of life.19 Nevertheless, clinicians should recognize that patients’ readiness to engage in advance care planning will vary throughout the course of their illness.20 <br /> <br /> Although advance directives or POLST documents are a start, they are only one element of advance care planning. Ongoing communication among patients, clinicians, and loved ones is the critical piece, and discussion about goals of care needs to focus on the specific aspects of a patient’s situation as opposed to theoretical situations.21 Sudore and Fried recently articulated a Three-step process for preparing patients and surrogates for future decision-making. Rather than focusing on prematurely conceived or theoretical situations, they suggest working with patients to prepare for in-the-moment decision-making.22 This involves 1) choosing an appropriate surrogate, 2) clearly articulating values and preferences, and 3) establishing some leeway in surrogate decision-making given the complexity of a situation. The focus of this approach is preparing patients and surrogates for decision-making rather than making decisions about theoretical scenarios in advance. Thus, Sudore and Fried’s approach attempts to address criticisms of advance directives—that they utilize hypothetical situations that are unlikely to be encountered, are too obscure for patients to understand, or have little meaning given the patient’s current situation.23 <br /> <br /> In contrast, a discussion among the patient, the surrogate, clinicians, and other persons interested in the patient’s healthcare- related values, goals, and preferences (and documenting the outcomes of that discussion) is superior to relying on a surrogate’s interpretation of a patient’s advance directive.24 Furthermore, constructs such as the substituted interests model place greater emphasis on the patient’s values as understood by the surrogate, than on what the surrogate thinks the patient would want in a given medical situation.14<br /> <br /> Finally, advance directives are only as effective as the information they contain. Most advance directive forms are written in a way that patients cannot easily understand, which may impair their ability to complete the document.25,26 In addition, evidence suggests that clinicians are more likely to adhere to treatmentspecific statements than general statements.21 Advance directives, therefore, may have limited use in promoting autonomy.27,28 Nevertheless, we believe a surrogate’s decisions are better trusted when the patient has an advance directive or POLST form, as these documents indicate the patient has thought about his or her health care-related values, goals, and preferences while capable of making decisions. This is consistent with common-sense notions about how one makes major decisions in a deliberative and respectful manner. 28,29 <br /> <br /> Al Barnes succumbed to organ failure despite the best medical efforts. He died before there was a need for the court-appointed surrogate to have to make decisions about whether to withhold or withdraw life-sustaining treatments, which he may not have wanted. With an aging society and the ability of medicine to help people live longer, it is likely that clinicians will care for more and more patients who are candidates for life-sustaining treatments.<br /> In light of these developments, clinicians should encourage their patients to articulate and document their wishes and preferences.They also need to understand that completing an advance directive is only one piece of what needs to be an ongoing, deliberative, and reflective process.<br /> <br /> Keith swetz and Paul Mueller are in the Division of General internal Medicine at Mayo Clinic. Mark Kuczewski is with the neiswanger institute for Bioethics and Health Policy at loyola university Chicago, stritch school of Medicine.

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