Ethics in Practice Kristi L. Kirschner, MD, Editor

When Life Imitates Art: Surrogate Decision Making at the End of Life

Susan P. Shapiro

The privileging of the substituted judgment standard as the gold standard for surrogate decision making in law and bioethics has constrained the research agenda in end-of-life decision making. The empirical literature is inundated with a plethora of “Newlywed Game” designs, in which potential patients and potential surrogates respond to hypothetical scenarios to see how often they “get it right.” The preoccupation with determining the capacity of surrogates to accurately reproduce the judgments of another makes a number of assumptions that blind scholars to the variables central to understanding how surrogates actually make medical decisions on behalf of another. These assumptions include that patient preferences are knowable, surrogates have adequate and accurate information, time stands still, patients get the surrogates they want, patients want and surrogates utilize substituted judgment criteria, and surrogates are disinterested. This article examines these assumptions and considers the challenges of designing research that makes them problematic. Key words: substituted judgment, surrogate decision making, research design

here are sometimes moments in an patterns, causes, and places of death. In some respects these changes “have made living easier and dying harder.” academic life when one’s scholarly agenda [1(p14)] More effective treatments may significantly extend life T and personal biography unexpectedly, but may also confront dying individuals, their families, and sometimes tragically, overlap. This collision opens health care providers with a prolonged period of dying that a window into one’s research that had been involves complex choices about end-of-life care. …[T]he previously opaque and affords an opportunity to timing of an individual’s death has also changed. In 1992, it was estimated that 70%[2] of the 6,000 deaths that occur see it with new eyes. It exposes what had been daily in the United States are somehow timed or negotiated invisible and imposes an overlay of shades of gray with family, doctors, and the dying person when compe- over what had formerly appeared black and white. tent, quietly agreeing to not use death-delaying And so it was that, just as I was beginning an technology.3(pp5–6) observational study of surrogate decision making But dying persons are not always able to “negoti- at the end of life, I took up residence – quite ate” their own deaths. Two studies found, for ex- unexpectedly – in a hospital where my father ample, that of all decisions to withhold or with- would spend his last days. This article, which was draw life support in the medical-surgical intensive written when my father was healthy and vibrant, is care units (ICUs) of two urban hospitals, only 3%– now retold through the lens of a recent denizen of 4% were made by the patients themselves; the the world my research hopes to understand. It other patients were not considered competent.2,4 draws on what the scholarly literature tells us Of course, patients who end up in an ICU may lack about surrogate decision making and is overlaid competence more often than those who face death with preliminary observations from my research site and 3 weeks of experience as a research subject in a quite different setting. Susan P. Shapiro, PhD, is Senior Research Fellow, American My experience, however momentous it was to Bar Foundation, Chicago, Illinois. me, is not all that uncommon. Over the last cen- Top Stroke Rehabil 2007;14(4):80–92 tury, advances in science, medicine, and public © 2007 Thomas Land Publishers, Inc. health have yielded dramatic changes, not only in www.thomasland.com the life expectancy of older adults, but also in the doi: 10.1310/tsr1404-80

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at home or in other settings. One does not have to mote their well-being, and choose, after weighing do the math to recognize that the final days of an the benefits and burdens, a course of action with extraordinary proportion of patients’ lives are be- the greatest net benefit.7,20,23,24 ing choreographed by others. The most significant The privileging of the substituted judgment life-and-death decisions of our lives – literally – are standard in law and bioethics has inspired much being delegated to others. of the research on surrogate decision making. Some of us plan for the possibility that we will The literature is inundated with scholarly ver- lose the capacity to choreograph our lives or sions of the Newlywed Game25,26 in which re- deaths. We write living wills,5–7 “Ulysses”8–10or searchers test whether surrogates get decsions pre-commitment contracts, or durable powers of “right” and when they are most likely to do so. attorney in which we (1) specify our values, prefer- Most of these contests pose hypothetical medical ences, and decision rules; (2) designate parties to scenarios to potential patients and their potential carry them out and to exercise discretion on our surrogates (and occasionally their physicians as behalf; and (3) delineate the conditions under well) to assess the correspondence in predicted which these documents go into effect or desist. We treatment preferences.20,27–34 (Some studies even opt for contract over trust to protect our future invite conversation on end-of-life issues between interests.11–15 patient and surrogate before they complete the For the majority of us who fail to provide a questionnaire – typically to no effect.) Other contract or whose instructions are too vague or studies focus not on specific wishes or treatment incomplete, legal statutes and court decisions seek preferences, but on general goals for care or pref- to preserve our constitutional rights of autonomy erences about the process by which patients want and self-determination16,17 and to restore our voices end-of-life decisions to be made.34 Without going when they have been otherwise silenced. Most juris- into great detail, the results of several dozen stud- dictions in the United States specify who is to speak ies suggest that some of the assumptions underly- on the patients’ behalf when they have not named a ing the use of substituted judgment may be illu- surrogate18 and enunciate standards by which sur- sory. A recent meta-analysis of 16 of these studies rogates make decisions for the patients and eviden- (encompassing 151 scenarios and 2,595 patient/ tiary rules to guide their judgments. surrogate pairs) found an overall prediction accu- In most states, the substituted judgment standard racy of 68%, which varies somewhat by type of is considered the gold standard and given highest health problem or type of medical intervention priority. It dictates that surrogate decision makers offered in the scenario.35 should choose as the patients would now choose, Individual studies found substantial discrepan- if they were competent and aware of all the rel- cies between subjects and surrogates in their as- evant facts and circumstances, including the fact sessment of the subjects’ satisfaction and quality of that they are incompetent. It is as if the patients life; they also found that spouses and children tend were to miraculously awaken from their coma or to underestimate the subjects’ functional status. attain lucidity for a few moments, knowing that Both these assessments are essential to the they will soon lapse back into their former state.16 surrogate’s ability to make either substituted or Surrogates must “don the mental mantle”19(p545) or best interest judgments. Indeed, in several studies, stand in the patients’ shoes20 – taking into account surrogates did no better than chance (and occa- the patients’ prior statements, actions, instruc- sionally did worse). Nor did the surrogates named tions, personal value system, character, goals, be- by subjects as their preferred decision maker (akin liefs, attitudes, and lifestyle – to try replicate what to a person appointed under a durable power of the patients would have wanted.21,22 Where the attorney) do any better than the others. Moreover, patients’ preferences cannot be determined, legal neither frequency of contact, similarity in age or doctrine instructs surrogates to adopt a best interest gender, nor type of relationship affected the accu- standard to advance the patients’ interests, pro- racy of their predictions. 82 TOPICS IN STROKE REHABILITATION/JULY-AUG 2007

Data collected by the SUPPORT study from wed Game” model makes several problematic as- thousands of “real” hospitalized patients, many of sumptions about that context. them critically ill, and their actual surrogates36–39 found much the same thing. Patients (if able) and Our Wishes Are Knowable surrogates were interviewed on multiple occasions throughout the course of hospitalization and after One reason surrogates guess wrong is that the release/death and asked about care, prognosis, subjects in these studies behave like the rest of us. quality of life, treatment preferences, and decision Few of them had discussed life-sustaining inter- making. As in the hypothetical studies,20,27–35 re- ventions with their physicians or families,20 even searchers compared patient and surrogate prefer- those “at relatively high risk of terminal ences (for those hospitalized patients who were events.”29(pM120) Because the vast majority of the competent and able to speak – a potentially biased surrogates were confident that they knew the sub- sample, of course). They found a slightly higher jects’ preferences, they were probably even less level of agreement (74%) than in the hypothetical likely to confer or check out the accuracy of their scenarios administered to healthy subjects. Again, assumptions and understandings. Family mem- researchers found differences in perceptions of bers, socialized in the same cauldron of values and quality of life between patients and their surro- beliefs, may assume that they share the same gates, for example, in their willingness to give up worldview and confuse their values and prefer- months of life in their current state of health for a ences for those in whose shoes they now stand. shorter life in excellent health (what they call “time Social psychologists label this phenomenon a false trade-off scores”).40,41 Many surrogates also got consensus effect, in which individuals – even wrong patients’ willingness to live in a nursing strangers – tend to overestimate how much others home. Although they were reasonably accurate agree with their judgments, values, positions, predicting those patients who indicated that they choices, or behaviors.44,45 were unwilling to live in a nursing home, they Even when surrogates separate their values correctly predicted only 37% of those patients from those for whom they substitute, they en- willing to live in a nursing home. Among patients counter many challenges in their quest to identify who indicated that they were very willing to live the other’s values. For one thing, they face a permanently in a nursing home, surrogates said moving target.7,15,17 As Emanuel and Emanuel ob- that 14% would rather die.42 serve, “There are few, and conflicting data, to Most of these studies conclude that the dispari- suggest that a patient’s preferences are durable ties between preferences and predictions cast and thus that views expressed at one point in doubt on the capacity of surrogates to reproduce time reflect the patient’s true wishes months or substituted judgments. As one overview of the years in the future.”20(p2070) Our preferences – empirical evidence observed, “...the imaginative about spending or saving money, taking risk, our capacity required for accurate prediction of a need for independence, our tolerance of limita- patient’s wishes may be beyond most tions or impairment, what gives us pleasure, who people.”20(p2069) Another concluded that surrogate we trust or love, what we value, our religiosity or decision making – “far from having scientific accu- faith, and so on – change, especially as we age, racy and objectivity – in most cases represents a experience illness or disability, or approach complicated form of guesswork, suffused by the death.7,46 Some may interpret these changes as decision maker’s biases.”43(p10) consequences of impairment or of undue influ- But substituted judgment is much more than a ence rather than legitimate shifts in our values parlor game. There are many reasons surrogates and preferences and refuse to honor them. In- get the “wrong” answers, which illuminate the deed, we may ourselves fail to appreciate in ad- complex medical, normative, interpersonal, epis- vance how impairments that undermine our temological, and social–organizational context in competence may simultaneously alter other judg- which end-of-life decisions are made. The “Newly- ments and preferences.47 Numerous studies Surrogate Decision Making 83

document the instability of patient preferences ourselves or among different selves,53 to reconstruct even over much shorter periods of time.6,7,42,48–52 an identity from ambiguous and fragmentary Where does one look for substituted judgments pieces, to decide whether the priorities and values when patients’ minds are literally changed?50 Who we treasured as young and middle-aged adults is the patient whose preferences must be repli- trump those we have expressed in the last year or cated? When illness and injury to the brain trans- maybe only the last few weeks. form or alter identity, whose autonomy/interests Indeed, we are asking others to do what our are to be honored—the person before the onset of competent selves may be incapable of doing.6 Is it disease or injury or the person after?50,53 even possible for us to know how we would decide Research demonstrates that patients and surro- before we face the situation and experience the gates are very bad at predicting how they will feel many changes that lead up to it?7,57,58 If we cannot about medical problems in the future.7 Research make a substituted judgment for our future selves, on affective forecasting54 has found that we how can we expect someone else to make it on even more slender evidence? overestimate the intensity and the duration of our emo- tional reactions – our “affect” – to future events. …On average, bad events prove less intense and more transient Surrogates Have Adequate, Accurate than…predicted. …People adapt to serious physical chal- Information lenges far better and will be happier than they imagine. …This gap between what we predict and we ultimately experience [is known as] the “impact bias.”55 There is no clear correspondence between val- ues and specific choices; even if surrogates can So, what are surrogates to make of the instruc- perfectly reproduce the patients’ values, the appro- tions of healthy individuals (e.g., that they priate decision does not automatically follow. (A wouldn’t want to live with a particular infirmity), if surrogate may know that he or she should pull the these statements are likely to be tainted by bias? plug, but not know when.) The beauty of hypo- How do surrogates temper their biases in affective thetical scenarios is that researchers control the forecasting? Should they? fact pattern to which subjects respond. The experi- Then, there is the matter of evidence. Even when mental design may vary how the information is surrogates struggle through the patients’ convo- framed, the level of specificity, the degree of cer- luted biographies to discern their true preferences, tainty, and so forth, but subjects are given a fact it is unlikely that these ruminations will satisfy the pattern about which to formulate a treatment pref- letter of the law. It does not take a world-class erence. Their counterparts in the real world have methodologist to suspect that it will be difficult to far less to go on. They may receive little or no secure valid measures of substituted judgments, let information at all from physicians when the latter alone the “clear and convincing” evidence of what do not need them to consent to a procedure. Sur- the patients would have wanted, which is required rogates may find that they must take the initiative, by courts in some jurisdictions to terminate life sometimes aggressively, to learn enough to exer- support.56 Some of us leave rather vague legacies of cise their responsibilities. ambivalence, empty or imprecise words, mixed, Prognostic information about functional status ambiguous, or contradictory messages, and silences as well as survival can be especially hard to come that can be interpreted in disparate ways by differ- by.59,60 The literature documents the difficulty of ent interpreters with unique relationships and his- generating accurate prognostic information, the tories with us and with different interests. How cognitive barriers physicians face when applying certain must surrogates be? How conservative generic scientific models to unique individuals, should they be when the data they have amassed are and the reluctance of physicians to share prog- somewhat thin? Except where the most abundant, noses with their patients or those who act on their direct, specific, consistent, compelling, triangu- behalf.61 Out of fear of being wrong, they may offer lated, and unwavering evidence is available, we are nothing at all.60 And, even when offered, such asking others to choose among various versions of information is tainted by physicians’ consistent 84 TOPICS IN STROKE REHABILITATION/JULY-AUG 2007

over-optimism and by the “incommensurability of views may understandably change over time. The medical and lay knowledge [that] prohibits clear same decision may be revisited many times.62 communication and may prohibit shared decision What may be most important in understanding making.” 61(p128) surrogate decision making is not how surrogates A dearth of information is only part of the prob- process facts or values but simply observing the lem. An abundance of conflicting, inconsistent in- rhythms of illness, treatment, and organizational formation is another.59 In the hypothetical sce- routines and how surrogates respond to them and narios, incontrovertible facts just appear, the passage of time. seemingly from a single source, a rarity in 21st Because diagnostic and prognostic information century health care. The social organization of the sometimes comes in fits and starts and may be delivery of medical care plays a significant and incomplete, inconsistent, or equivocal or some largely invisible role in surrogate decision making. 17 messengers may be more certain than others, sur- When a patient has a long-standing disease that is rogates may need time to assimilate and process being managed by a trusted physician, information, the information or come to an understanding of when forthcoming, is delivered in one voice. When what the future likely holds, given an array of the patient enters the hospital, especially with a treatment options and potential risks and benefits. new ailment, the voices multiply dramatically as While surrogates await information from health different shifts of unfamiliar physicians, nurses, care providers, they may also be monitoring the technicians, and therapists rotate in and out of the patient themselves (fashioning lay neurological ex- room. In a teaching hospital, the choir becomes ams, for example) and making their own diagnos- even louder. If the patient is treated with tic and prognostic determinations. One ICU family multidisciplinary specialists, an unorchestrated recently rescinded a DNR order after the patient babel of voices intensifies the din. Physicians rep- blinked; another refused to believe the patient was resenting many disciplines may disagree about di- brain dead because they saw a tear roll down her agnosis and prognosis and about treatment op- cheek. tions and their risks and benefits, but individuals Decisions may be postponed while surrogates within a given discipline or specialty may also await further tests for more conclusive informa- disagree. Surrogates may be bombarded by the tion, to see whether an ailment resolves, to give a inconsistent prognostications of these specialists particular therapy a try, or to assess an evolving who parade past the bedside, even as these special- situation (potential new metastases, diminution of ists sometimes fail to share their insights with their spinal chord swelling, etc.). They may be post- colleagues in other disciplines. Indeed, there may poned while surrogates await prognostic bench- be no one at the bedside who has the “big picture,” marks. Some decisions will change after the surro- whether or not it is being shared with the surro- gate sees firsthand what a particular procedure gate. Some organizational arrangements may inte- entails (e.g., a full code after cardiac arrest). Some- grate, translate, quiet, or manage the babel better times decisions will change when the surrogate than others, but surrogates are hard pressed to hits certain medical (the need for a tracheostomy) formulate substituted judgments when they have or bureaucratic (e.g., insurance rules require that little reliable data about which to judge. the patient be moved to another facility) deadlines that demand a response or force the patient down a new and unwelcome pathway. Time Stands Still Sometimes delay is for the benefit of others. The hypothetical scenarios offer surrogates a Over the course of treatment, the patient’s medical snapshot in which time stands still. Surrogates condition and mental status may improve or dete- assess a static fact pattern and treatment option riorate, wax and wane. Some surrogates will post- and say aye or nay. As the previous discussion pone a decision in the hope that the patient’s suggests, real-world decision making is a dynamic mental status will improve to the point that he or process. Rarely are surrogates given only one op- she is competent to make medical decisions. Oth- portunity to make a particular decision, and their ers postpone a decision while they try to get every- Surrogate Decision Making 85

one in the family on the same page or in the hope patients in the survey indicated that they wanted a that they can secure the assent of a recalcitrant, surrogate other than their spouse (the default deci- uncertain, or missing significant other. Sometimes sion maker in most jurisdictions). A quarter pre- the surrogate’s mind will change after ongoing ferred a surrogate other than the emergency con- reflections and conversations with members of the tact person on file in their physician’s office. patient’s social network clarify the patient’s wishes Although legal default rules are indifferent to gen- and values. And sometimes the surrogate simply der, most patients preferred their mothers, daugh- requires time to be certain about what may turn ters, and sisters over their fathers, sons, and broth- out to be an irreversible decision. ers, respectively. Another study found that Reversibility poses a significant constraint. Al- patients believed that their children understood though some decisions can be revised repeatedly, their wishes better than their spouses.34 surrogates sometimes have a very small window of The legal default rules assume rather conven- opportunity to terminate or refuse what may, in tional nuclear families. Patients arrive in many hindsight, turn out to be futile care.63 In the very alternative configurations, however. They bring early stages of a traumatic injury, when prognosis common-law spouses, committed partners, and is still very uncertain, a surrogate may have the intimate friends; stepchildren and illegitimate chil- opportunity to withhold treatment (e.g., surgical dren; and estranged spouses, parents, and siblings. intervention, resuscitation, a ventilator or feeding For some, the legal configuration of intimacy and tube) necessary to sustain life. Later in the course entitlement does not correspond to that in their of treatment, when the patient is stable and the family, where grandparents, aunts, nieces, or prognosis known, there may no longer be life- neighbors have stronger ties than spouses, parents, sustaining treatments that can be withheld or children, or siblings. Others arrive with injuries withdrawn, if the surrogate then seeks to end the (e.g., falls, assaults, gun-shot wounds) for which patient’s life. So early on, the surrogate sometimes their presumptive surrogates are potentially re- faces the impossible choice of ending a life that sponsible. Some surrogates may be of questionable may turn out to be worth living or waiting to see competence, because of illness or substance abuse. and then having no recourse if the prognosis is Some patients have medical secrets they have grim. struggled for years to keep from their families who These observations assume that surrogates are now, as the default surrogates, are entitled to un- actively engaged in making medical decisions and earth. can control their timing. In reality, the timing of Even when patients name their surrogates in many treatment decisions is orchestrated by the advance or the default rules or procedures em- caregivers. In some instances, choice is but an power the person they would have chosen as their illusion. Drought and Koenig note, for example, surrogate, had they bothered to do so, decisions in that “[e]ven though the providers actively voiced the real world are not always so simple. Both legal support for patient involvement in treatment deci- rules and most research protocols look to a single sions, they offered true choice only when highly party as the surrogate decision maker. This as- limited options shaped by dire biologic impera- sumption may work reasonably well when the tives left little at stake.”61(p122) Russ and Kaufman surrogate is a spouse, but the other tiers in the observe that “…‘choices’ that families are asked to priority hierarchy tend to be populated by more make about a patient’s dying are most often pre- than one candidate, many of whom are unwilling sented at precisely the time that death has become to defer to another. They may jockey for primacy inevitable, and choice is meaningless.”59(p118) or make decisions collectively. In other instances, the uncontested official surrogate is silent, defer- ring to another or other members of the patient’s We Get the Surrogates We Want social network. Sometimes the role of surrogate is A recent survey found that patients do not al- passed around as family members and others take ways get the surrogates they want when they do turns maintaining a vigil at the hospital; whoever is not name them in advance.64 A third of married there or has the cell phone gets to decide. When 86 TOPICS IN STROKE REHABILITATION/JULY-AUG 2007

the course of medical care is protracted, some reproduce the patients’ wishes, it turns out that potential surrogates will drop out along the way many patients do not care if their surrogates do so and others will appear in the eleventh hour. Cer- or even prefer that they do not. A diverse collec- tainly the group dynamic of the social network in tion of studies has found that, when asked, a sub- which one or more surrogates are members will stantial number of patients indicate that they feel shift over time. Despite the legal and methodologi- the wishes of their surrogates ought to trump their cal fiction and even the preferences of some pa- own. In the SUPPORT study of critically ill hospi- tients,65 surrogate decision making is often an os- talized patients, described earlier, 78% of the pa- cillating collective enterprise. tients indicated that, if they were to lose decision- making capacity, they preferred that their family Surrogates Should Try to Reproduce Our and physician make resuscitation decisions rather Wishes than follow the patients’ previously stated prefer- ences.67 Two other studies found that slightly less The hypothetical scenarios ask surrogates to than or slightly more than half of respondents felt predict patient preferences. In the real world, that that their surrogates should have “a lot” or “com- is not what some surrogates attempt to do or, plete” leeway to override their advanced direc- apparently, what some patients want them to do. tives34,68; a third study found that more than half of Real-world surrogates, few of whom have even the respondents wanted the preferences of their heard of legal standards like substituted judgment surrogates to apply, even when the surrogates had or best interests, undoubtedly use many criteria expressed preferences that were the opposite of not always found in legal statutes or court opin- their own.69 ions. Some follow or give assent to recommenda- In short, just because some surrogates are able to tions/decisions of the medical staff. Some project accurately reproduce patient preferences, that their values onto those of the patient, choosing does not mean that those preferences direct end- what they would want for themselves under the of-life decision making. The results of the “Newly- circumstances.66 Some seek to end pain and suffer- wed Game” contests – even if the correlations had ing. Others leave the decision to God or cite their been much higher – may be largely beside the religious values as central to the decisions they point. If some surrogates embrace decision-mak- make. Some fear loss or are unable to let go of a life ing criteria other than substituted judgment and/or partner they cannot bear to live without. Others if some patients prefer that they do, the responses consider the impact of the decision on their family, to hypothetical scenarios tell us little empirically or giving priority to what is best for the family. Some normatively about how end-of-life decisions are are undoubtedly influenced by financial consider- formulated in the real world. The question is when ations, the burdens of caretaking, guilt, or the is this true and for what kind of people? demands of ongoing litigation (that often provides more compensation for live plaintiffs than dead Surrogates Put Our Interests First ones). Certainly, some surrogates are nudged away As if donning the mental mantle or formulating from their instincts or evolving decisions by physi- the best interests of another is not formidable cians, nurses, or ethics consultants who instruct enough, surrogates must proceed encumbered by them that they are to decide as the patient would weighty baggage imposed by conflicts of interest. decide. The mantra, “It’s not what you want; it’s Perhaps the greatest irony of fiduciary or trust what the patient would want,” echoes occasionally relationships (of which serving as a surrogate is an though the hospital. But many surrogates are given instance) is that the most able and desirable trust- no guidance or feedback regarding criteria for de- ees – who offer familiarity and intimacy, caring cision making, and others reject the advice they and commitment, esoteric knowledge, inside in- receive. formation, expertise, hands-on experience, and After all this angst that emerges from trying to political, financial, and social capital – are also Surrogate Decision Making 87

least likely to be disinterested.70 In other words, they dislike them. Other relatives may insist on they may not put the patients’ interests ahead of aggressive, heroic, or futile treatments to keep the their own. patients alive – which the latter would not have Surrogates often have the most to gain or lose by wanted – out of guilt, fear of being responsible for discretionary decisions they make on the patients’ death, fear of loss and concomitant feelings of behalf. This tug of war is most palpable when attachment or love, their “own fear of dying, or a family members serve as surrogates. The compel- religious view that life must be prolonged at all ling case for entrusting them with this profound cost, or even a perverse satisfaction in seeing [the responsibility, especially with making substituted patients] suffer.”72(pp810–811) And, of course, financial judgments, reverberates from Presidential Com- interests frequently roil family systems. Expensive missions to court opinions to empirical data. custodial and medical care may be imposing sub- Rhoden summarizes the argument: stantial financial burdens on the patients’ loved ones. Decisions on the patients’ behalf may drain Not only are family members most likely to be privy to any relevant statements that patients have made on the topics of or deplete the inheritances surrogates expect to 73,74 treatment or its termination, but they also have receive, bequests to which they may feel espe- longstanding knowledge of the patient’s character traits. cially entitled as compensation for all of this Although evidence of character traits may seem inconclu- wrenching surrogacy. sive to third parties, closely related persons may, quite This is not to say that surrogates intentionally legitimately, “just know” what the patient would want in a put their interests first or are even mindful of this way that transcends purely logical evidence. Longstanding knowledge, love, and intimacy make family members the tension between their interests and those of the best candidates for implementing the patient’s probable patients. It is simply to say that conflict of interest wishes and upholding her values. is inherent in surrogacy, as in all other fiduciary relationships, and it adds one more reason why …The family is the context within which a person first those who speak on the patients’ behalf may fail to develops her powers of autonomous choice, and the values provide accurate substituted judgments of their she brings to these choices spring from, and are inter- wishes.75,76 twined with, the family’s values. A parent may understand a child’s values because she helped to form them, a child may grasp a parent’s values because the parent imparted Methodological Problems them to her, and a couple may have developed and refined their views in tandem. …[I]t makes sense, when trying to I have saved the most obvious critique for last. identify the choice the patient would make if she could, to Dispassionate paper-and-pencil answers to hypo- defer to the family as one of the groups from which the thetical questions patient’s former power to make rational choices • without life-and-death consequences (or in- arose.71(pp438–439) deed any consequences at all), These virtues also make it difficult for family • stripped of social context members, however well meaning, to distinguish or • and the extended families and friends who separate their interests from the patients’ interests. interact with or influence surrogates, In the literature, there is a litany of reasons why • reported over the course of a few minutes loved ones may defy patients’ interests in decisions • by largely healthy, young respondents to let them “die with dignity” – because they suffer • who may never actually have a surrogacy rela- as the patients do (perhaps even more so if the tionship with one another, latter are comatose or unaware of their mental • about unambiguous medical scenarios incapacity or degrading treatment) or because of • few of them have ever faced the extraordinary emotional burden, disruption in provide a limited understanding of how surrogate their lives, and caretaking responsibilities that decision making actually occurs. Some of these have been imposed on them, all of which may be studies are more realistic than others, especially relieved by the patients’ death. Some may even those that focus on hospitalized and elderly pa- defy the patients’ interests out of anger or because tients and their actual surrogates in the midst of 88 TOPICS IN STROKE REHABILITATION/JULY-AUG 2007

real health crises, but all fall short in simulating the Conversations may sometimes occur “out of range” conditions under which medical decisions are ac- – in the car driving home, on the telephone, in bed tually made. Moreover, because most of these – where observers are denied access. This research studies examine outcome rather than process, the is of necessity very labor intensive and therefore data, even if meaningful, tell us what decisions likely to yield rather small samples. would-be surrogates might make not how and As a result of these logistical challenges, these why they made these decisions. studies also face significant nonresponse and selec- Existing scholarship has utilized alternative re- tion bias. Those surrogates on site or willing to be search strategies that examine the participants and observed or interviewed are unlike those who are settings in which surrogate decision making takes not. For all of the reasons that hospital routines are place and that better interrogate the assumptions not socially organized randomly, access is prob- inherent in the hypothetical substituted judgment lematic, some surrogates are always around and scenario studies. They include interviews,37,38,77,78 others communicate only by phone (if at all), and retrospective interviews,79–82 and observation – ei- surrogates (and physicians) are differentially will- ther directly77,78,83–85or from audiotaped family ing to participate in the research, the data gathered conferences.86,87 are likely to represent some kinds of illnesses or Variations on these research strategies can ex- injuries, demographics, characteristics of surro- plore how surrogates understand their role and gate decision makers, and kinds of decisions more what criteria they actually use to make their deci- than others. sions. Moreover, they can examine the impact of Because interview and survey methods usually self-interest or other commitments and constraints interrogate one respondent at a time, they provide facing surrogates on their decisions. For those sur- a limited window on what is frequently a collective rogates who seem to be making substituted judg- process in which various family members, friends, ments, these methods can discover how surrogates and associates interact with an assortment of medi- try to know or determine the patients’ preferences, cal personnel. Although interviewers can certainly the memories they invoke, and the evidence they ask individual respondents how parties jockeyed find compelling. These methods are dynamic; they for position, who was influential, what impact can explore how the passage of time, the course of physicians and their framing of information had the disease and its treatment, even the impact of on how decisions were made, and so forth, indi- previous decisions affect subsequent ones. Simi- vidual informants may not be the most accurate larly, they can make problematic the network and reporters of the social dynamics that swirled organizational context in which surrogates are around them. situated and examine the impact of family, friends, Surrogates may not be the most objective dis- health care personnel, and others on how surro- passionate reporters of their experience; this prob- gates exercise their role. lem is even more likely when interviewees are These methodologies have limitations, of describing events that are often surrounded by course. They face considerable logistical chal- guilt, fear, ambivalence, conflict, self-interest, and lenges. On the one hand, surrogates may be in betrayal. Surrogates’ stories may change to impress shock, overwhelmed, distraught, and experiencing or elicit the approval or sympathy of the inter- considerable stress and disruption of their lives viewer or to tell him or her what respondents think and other responsibilities; at the very least, to elicit the interviewer wants to hear. their participation in a research protocol will be More significant, both interview and observa- burdensome for many surrogates. On the other tional methods are vulnerable to problems of reac- hand, medical decisions unfold 24/7, and behavior tivity – the act of asking questions or observing may occur at any time or place, often without behaviors may affect or alter the behaviors. The notice. It is difficult to predict when and where very act of asking surrogates what they are think- surrogates will be available for interviews or where ing might change that thinking. Especially if inter- conversations will occur that warrant observation. views occur repeatedly over the course of treat- Surrogate Decision Making 89

ment or a hospital stay, the questions that the created, edited, and rewritten to make sense of the researcher asks – no matter how carefully chosen experience for the respondents themselves, to rec- and articulated – or the memories they evoke may oncile their grief, to regain control of their lives, to guide, sensitize, or influence decision makers, allay their guilt, or to please or escape the accusa- spark a conversation with family members or phy- tions of family members.81,82 sicians they would not otherwise have had, or in These methods are imperfect but can be refined some other way provoke surrogates to take a dif- with triangulated data and sensitivity to the ferent path than they were following prior to the sources of bias and creative strategies to compen- interview. Observational methods are potentially sate for them. Although the challenges are con- reactive as well, as subjects are influenced by the siderable, there is no other way to come to under- presence of the observers, try to impress them or stand this rite of passage that most of us will say or do what they think the observers want to experience as we near the ends of our lives and of hear or see, or censor their behavior. those we love or for whom we have responsibil- Retrospectively interviewing surrogates and ity. other participants minimizes the risk of reactivity I never played the substituted judgment parlor and avoids burdening respondents with interviews game with my father, though I am virtually certain solicited in the throes of medical crisis or tragedy. that I would have gotten a perfect score. And yet I But there is also a unique danger. Retrospective am still haunted that we did the wrong thing. interviews will necessarily unearth a different ver- Perhaps some day our research will explain why. sion of events than contemporaneous ones. Stud- ies using this methodology show how surrogates Acknowledgments “manipulate,” “reconcile,” “alter,” “optimize,” “sac- rifice,” and rationalize their memories. Retrospec- This project received support from the Ameri- tive accounts of the decision-making process are can Bar Foundation.

REFERENCES

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of Treatments [SUPPORT] and the Hospitalized Eld- serious loss of some higher brain function due to erly Longitudinal Project [HELP], studies of more stroke or other illness” [see ref. 16, p. 106]. than 9000 critically-ill patients with a projected 6- 48. Chochinov HM, Tataryn D, Clinch JJ, Dudgeon D. month mortality rate of 50%, hospitalized across Will to live in the terminally ill. Lancet. 1999;354: five teaching hospitals (SUPPORT) or 1176 patients, 816–819. 80 years old or older, regardless of prognosis, who 49. Krumholz HM, Phillips RS, Hamel MB, et al. Resusci- were hospitalized at one of four teaching hospitals tation preferences among patients with severe con- (HELP) and/or their surrogates. As of 2005, there gestive heart failure: results from the SUPPORT had been 183 articles published that presented pri- project. Circulation. 1998;98(7):648–655. mary or secondary analysis of the SUPPORT or HELP 50. Kirschner KL. When written advance directives are data. 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