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

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When Life Imitates Art: Surrogate Decision Making at the End of Life 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 80 Surrogate Decision Making 81 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.
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