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A daily reality in hospitals and a task that most often falls to family members is making choices for patients who lack decision-making capacity. Referred to as proxies or surrogate decision makers, these individuals are expected to make decisions that accord with what patients would have wanted if they had been able to decide for themselves. In clinical practice, when patients lose decisional capacity, surrogates are asked to apply a hierarchy of three ethical standards based on the principle of autonomy: (1) known wishes, (2) substituted judgment, and (3) best interests. However, mounting empirical research indicates that surrogate decisions are not always consistent with the patients' wishes. This 3-standard hierarchy may not account for all of the factors that surrogates consider when making decisions on behalf of a loved one. The purpose of this article was to examine five assumptions about surrogate decision making that are implicit in the three-standard hierarchy. We then apply a moral psychology perspective to offer explanations about why surrogates may make decisions that conflict with this framework. Implications for practice and research are suggested to assist clinicians and researchers to develop appropriate interventions to support surrogate decision makers in this common yet difficult task.
Proxies and durable powers of attorney for healthcare are so-called surrogate decision makers (SDMs) who are asked to assume the role of making healthcare decisions when patients lack decisional capacity. In the late 1970s and early 1980s, a shift from paternalism to patient self-determination1 and autonomy2 occurred, prompting the SDM role to become more prevalent. This movement was highlighted in the legal sphere during the seminal judicial decisions concerning two young women who lacked decisional capacity: Karen Ann Quinlan in 1976 and Nancy Cruzan in 1990.3 In these highly publicized cases, the courts ruled that a decisionally incapacitated patient's previously stated wishes about medical care, as related by a family member, could be used as clear and convincing evidence to refuse life-sustaining medical interventions. In the United States, these court cases in part sparked the passing of the Patient Self-determination Act of 1990, which mandated that any healthcare institution receiving federal funds must provide patients with their rights upon admission-including their right to accept or refuse treatment.4 Concurrent with these cultural and judicial trends was a technological one: the emergence of life-sustaining technologies such as mechanical ventilation, hemodialysis, and chemotherapy. Although potentially lifesaving, these technologies began to sustain and protract the time period of a person's physical existence regardless of impaired cognition. Hence, the role of the SDM has become essential.2
Research over the past two decades has shown that surrogate decision making for seriously-ill patients is a difficult psychological task. A systematic review of 19 studies whose aim was to identify characteristics of SDMs in the context of withdrawing life-sustaining treatment reported that almost half of the studies emphasized the psychosocially complex and emotionally tumultuous experiences of decision makers.5 Another systematic review of 40 studies representing 2800 SDMs noted that most individuals suffered burdensome aftereffects months to years after their decision-making experiences.6 The purpose of this article was to use a case study to examine five assumptions about surrogate decision making that are implicit in the three-standard hierarchy. We will then apply a moral psychology perspective to offer explanations about why surrogates may make decisions that conflict with this framework. The discussion concludes with implications for research and practice.
Mrs Casey is a 68-year-old married woman in the intensive care unit who was admitted 2 weeks previously after experiencing a cardiac arrest at home because of a massive pulmonary embolism. She has a lifelong history of smoking and was found after testing to have small cell lung cancer that had gone undetected and metastasized to her liver. Mrs Casey has been mechanically ventilated and comatose since admission with questionable anoxic brain injury and within the past week has developed acute renal failure requiring continuous 24-hour dialysis. Also within the past week, she has been treated for sepsis requiring antibiotics and multiple infusions of vasopressive agents to maintain her blood pressure. Mrs Casey continues to receive aggressive treatment and is a full code. Mr Casey, a 67-year-old recently retired bank accountant, is the patient's emotionally devastated husband of 44 years and the SDM for his wife as designated by Mrs Casey in her advanced directives. Mrs Casey's advanced directives also stipulate that she does not wish to have her life prolonged by artificial and aggressive means if there is little chance of her recovery, although she is not specific in her wishes. The couple has a son and a daughter. Their daughter, married and 8 months pregnant with her first child, lives close by to her parents and has visited her mother and father daily. She has expressed repeatedly the wish that her mother have at least the chance to meet her first grandchild. Their son is a marine serving in Afghanistan. He has another 5 weeks left on his current tour of duty, and he is currently requesting leave for his mother's critical illness. Dr Grove, the patient's ICU intensivist, has approached Mr Casey about changing the goals of care from aggressive medical treatment to comfort care, given his opinion that Mrs Casey has a very poor prognosis. However, Dr Worthington, a consulting oncologist, has had conversations with Mr Casey about the possibility that a new experimental chemotherapy that might be able to treat Mrs Casey's underlying lung cancer. Mr Casey, emotionally and physically exhausted, participates in a family meeting that includes his daughter, the intensivist, the oncologist, Mrs Casey's staff nurse, a social worker, and the hospital chaplain to discuss which direction to take regarding the goals of Mrs Casey's care. At the end of the meeting, Mr Casey decides[horizontal ellipsis]
In complex situations such as Mrs Casey's, one obvious question is: What principles can assist the SDMs' decision-making processes as they face this difficult task? In bioethics, three hierarchical standards are commonly considered when a patient lacks capacity to make his/her own decisions. Listed in order of priority, these ethical standards include (1) the patient's known wishes (eg, expressed verbally or in writing), (2) substituted judgment, and (3) the "best interest" standard.7 This three-standard decisional hierarchy, based on patient autonomy, has been used over the past several decades to help healthcare practitioners and surrogates make healthcare decisions for adults who lack decision-making capacity.8Patient's known wishes refers to the standard of first choice whereby patients' explicitly stated desires to accept or decline specific medical treatments made in advance of an acute clinical situation are used to guide care. In the absence of a patient's known wishes, the substituted judgment standard is appealed to that directs surrogates to interpret a patient's expressed or written wishes (such as those expressed in an advanced directive), taking into account the person's values if known, and apply them in a given situation. Lastly, the best interest standard takes precedence in situations where the patient's preferences are unstated and otherwise unknown. The surrogate decides the greatest benefit to the patient according to what a "reasonable" person would do by weighing the costs, risks, and benefits of available treatment options.7
Despite the good intent and at times helpful guidance of this three-standard hierarchy, studies repeatedly show that surrogates may not use these standards in real-world contexts. Multiple studies9-12 and reviews13 have shown that when presented with hypothetical scenarios involving illness states and life-preserving measures, SDMs are inaccurate in predicting the preferences and treatment wishes of patients. Although some researchers found improvement in surrogate accuracy when completed advanced directives are available,14 many studies9,11,12,15,16 find that SDMs do not adhere to patients' preferences even when they are provided with advanced directives or stated wishes.
Recent commentators8,17,18 attempting to make sense of this corpus of research findings argue that there are underappreciated variables and processes that do not comport with this three-standard framework. For example, although we expect surrogates to try and reproduce the wishes of patients, surrogates have been found to make decisions based on their own values and preferences,9,11,19-21 consider factors beyond those of the patient's medical condition,21-23 and prioritize other ethical principles over the patient's wishes (autonomy) such as beneficence.9,24 What explanations might there be for the difficulty surrogates have in meeting the expectations of their decision-making role as described in this hierarchy? Moral psychology may offer some guidance around this question. Moral psychology investigates the intersection of moral theory and psychological fact25 and is a relatively new discipline that had its early beginnings with William James, Jean Piaget, and Lawrence Kohlberg in the late 19th and early 20th century.26 By empirically researching why individuals behave well or badly, moral psychologists are able to weigh in on which moral principles and values are psychologically feasible and likely to be practiced in everyday life.
Moral psychologists Knobe and Doris27 suggest that one way of considering the suitability of using abstract moral principles or standards, such as the three-standard hierarchy for surrogates, in our everyday world is to consider whether they accord with people's moral judgments in actual cases. Knobe and Doris27 assert that there is often a discrepancy in people's commitments to moral principles in the abstract versus in concrete cases. They found that the principles individuals sanction in abstract conversations might not be applied when faced with situations in the real world. This suggests that while Mr Casey might believe in the value of substituted judgment in the abstract, he may not actually use this principle when he makes a decision about his wife's medical care during the family meeting. When, as evidence often suggests, SDMs do not follow the precepts posed by the three-standard hierarchy, what is their motivation? The Table and the following discussion identify five assumptions about surrogate decision making that are implicit in the three-standard hierarchy. These assumptions are then examined from a moral psychology perspective suggesting alternative cognitive processes that might explain the disparity between SDMs stated and actual behaviors. Based on these insights, practical suggestions are offered that palliative care clinicians and researchers may wish to consider when they approach situations involving surrogate decision making.
If we expect others to honor our values and carry out our treatment preferences, then it seems all too obvious that we should be the experts on what those values and preferences will be. It therefore seems perfectly logical that we should be able to document our preferences and values in an advanced directive or communicate with someone ahead of time regarding the care we will want in the future. Yet this kind of advanced prognostication is difficult to do. Many moral psychologists claim that human beings are very poor predictors of what will make them happy in the future.28-30 And some SDM research supports this claim.31 Similarly, quality-of-life researchers encounter a similar situation known as "response shift" whereby individuals will often inaccurately predict their future well-being, given different possible future health states.32 This complexity is compounded by the fact that treatment preferences are known to change over time such that people differ at different points in their life about what is best for them.33,34
But why do preferences change over time? Moral psychologists Tiberius and Plakias29 explain that ethical standards are subject to criteria of appropriateness. These criteria cause ethical standards to change over time and thus ethical standards and values that seem appropriate now might appear inappropriate later. Two criteria of appropriateness that may trigger changes in one's endorsement of ethical standards over time are new information and affectivity.29 New information might be an obvious one: as beliefs about facts change over time because of new knowledge, pressure is put on ethical values to change as well. Similarly, values formed by affectivity (beliefs about how one will feel emotionally in the future) will likely be amended if those beliefs are false. Mr Casey may have claimed at an earlier time to be firmly committed to carrying out the wishes of his wife as she stated in her advanced directives. However, commitment to this value may be undermined if the actual experience of carrying out his wife's wishes paralyzes him with anticipatory grief (negative affectivity) about their son in Afghanistan not seeing his mother before she dies (in which case the value is not affectively appropriate).
A necessary assumption of the three-standard hierarchy is that individuals are the best experts at knowing and predicting what they will want in the future. Yet, an inherent part of human psychology appears to be that people change their wishes and preferences repeatedly and oftentimes unpredictably over time as new situations and emotions are experienced. If we cannot find ways of helping individuals to become better predictors of their future preferences, then Assumption 1 becomes tenuous, and the three-standard hierarchy is deprived of one of its key foundational assumptions.
Most of time, ethical standards, like those in the three-standard hierarchy, exist in our minds as abstract motivators of action and behavior.35 When we wish to think about a concrete concept such as a bird, we typically bring to mind a vivid image of a particular bird such as a sparrow or robin. In contrast, when we think about ethical standards, we tend to represent them in our consciousness as general statements (such as "do not kill" or "do not lie"). This can make judgments of when to activate ethical standards in the everyday situations a bit more ambiguous. Thus, when confronting particular situations, we have to more reflectively assess whether this situation calls for the activation of an abstract ethical standard. Moral psychologists have found that prior to making a particular choice motivated by an ethical principle or standard, people first assess, consciously or unconsciously, whether a standard is relevant to a specific situation.36,37 A set of circumstances must first be framed in a certain light in order to trigger a person to use ethical standards.
Before Mr Casey makes a decision about whether to endorse an experimental chemotherapy treatment for his wife, it must first occur to Mr Casey that this is a situation in which the substituted judgment standard would be applicable. One might interpret the situation this way: given Mrs Casey's critically ill health and poor prognosis, an "experimental chemotherapy" equates to an "aggressive treatment." Recall that Mrs Casey stated in her advanced directive that she did not want aggressive treatments. Thus, the substituted judgment standard should be invoked. However, Mr Casey might not assess the situation in that light. An experimental chemotherapy treatment might seem like a standard treatment, especially if the oncologist framed it in this way. Thus, the substituted judgment standard might not appear to him to be relevant. Moreover, it is reasonable to think that Mr Casey has no sense of the spectrum between standard and aggressive treatments because he has no experience with these concepts as would an experienced healthcare professional. Discrepancies in situation assessments such as this one appear to be common as evidence by research showing how surrogates and patients have significantly different perceptions of health and illness states.10,38-40
This situation illustrates that ethical decision making is a two-step process. The first step is to decide whether a set of situational factors calls for ethical standards to be considered. If so, the second decision is how to operationalize that ethical standard in the decision-making process in order to motivate behavior and choices that accord with the standard. Moral psychologists have repeatedly shown how cognitive processes and behaviors are highly influenced by the variability of how situations are framed.37,41 Merritt et al41 explain that what might be happening in grave situations where in retrospect it appears obvious that an individual should have acted differently is that the individual failed to "see" the situation as "a circumstance for ethical decision making." This suggests that we should be thinking more about how surrogates are interpreting or framing particular situations before we assume that they have coded the situation as one warranting application of any one of the triad of ethical standards.
If Mr Casey fully endorsed the substituted judgment standard and understood how it should be applied in his wife's case, should it be the only criteria he considered when making a decision about his wife's care? Strict adherence to the three-standard hierarchy implies that proxies use abstract principles in a fixed, mechanistic way to all judgments on behalf of another's medical care. Metaphorically, ethical standards function as a kind of skeleton key that can open the doors of decision making in all cases of an incapacitated patient. This stance toward ethical standards and principles is what moral psychologists Knobe and Doris27 call invariantism.
Invariantism is the claim that the same moral standards should be applied in all situations, regardless of individual circumstances. In this view, if Mr Casey views his wife's condition as one of impending death despite the efforts of any medical intervention, then he logically should abide by his wife's advanced directives and decide that the goals of her care should be changed to a focus on comfort and withdraw all treatments that do not support that goal.
However, if Mr Casey considers other criteria to be important, then violation of substituted judgment standard could be anticipated. For example, it might be reasonable to consider his son's desire, a marine stationed in Afghanistan, to see his mother before she dies or his daughter's desire for her mother to be kept alive for the birth of her first grandchild. Both of these considerations might compel Mr Casey to request that life-sustaining medical treatments be continued. Suppose Mrs Casey had stipulated in her advanced directives that "My care not be prolonged should I become overly burdensome to my family." Mr Casey then has to formulate and interpret what criteria equate to one being "overly burdened." This might explain why so many surrogates admit to projecting their own wishes and preferences onto patients.9,11,20
As Knobe and Doris27 contend and as the example illustrates, individuals in real-life settings typically are variantists. They use different criteria in different cases and as situations change over time. From the variantist perspective, changing circumstances make it perfectly reasonable to consider different standards in making decisions and may explain studies that show that patient treatment preferences and values change over time (for example, see Fried et al33 and Ditto et al34). Hence, Assumption 3 is a poor mirror of what happens in reality. Sensitivity should be given to how different sets of circumstances prompt surrogates to invoke and variously prioritize different ethical standards and values.
There is an expectation that surrogate decision makers should be reasonable in their decision-making process.7,42 Although sources do not always specify what it means to be "reasonable," it makes common sense that this standard should be followed. We do not want Mr Casey to make decisions for his wife whimsically but rather want him to reason soundly using the preferences of his wife's advanced directives as a guide. But just how difficult is it to gauge whether a surrogate's line of reasoning is satisfactorily cogent?
Moral psychologist Harman et al35 describe one model of moral reasoning that many philosophers and proponents of analytic decision making in healthcare43 have condoned, called the deductive model of moral reasoning. This model fits particularly well when applied to ethical standards and principles. In this model, an individual's reasoning starts with a moral standard. Other nonmoral premises about the facts of a particular situation are added, and then a conclusion is generated based on deductive reasoning.35 In Mr Casey's case, his reasoning based on this model might look like this:
[Black Square] Premise 1-moral standard: The standard of substituted judgment morally obliges me to make decisions that abide by my wife's expressed treatment preferences as stated in her advanced directives.
[Black Square] Premise 2-fact: My wife stated in her advanced directives that she did not want her life prolonged on the ventilator if her prognosis was poor.
[Black Square] Premise 3-fact: My wife is on the ventilator.
[Black Square] Premise 4-fact: My wife's prognosis is poor.
[Black Square] Deductive conclusion: Therefore, I am morally obligated to follow my wife's stated wish to not be on the ventilator.
Despite the soundness of this reasoning model, Harman et al35 argue that, in real life, human beings do not reason this way. They note two major flaws to the underlying assumptions of the deductive model. First, the deductive model fallaciously equates inferences made in real life with formal logical arguments. In other words, people are not necessarily reasonable in concrete situations just because they concur with the line of reasoning in a formal deductive argument. Suppose Mr Casey contemplates all four of the above premises: is he then left only with rationally accepting the conclusion? In actuality, Mr Casey has several options in this case. Instead of accepting the conclusion, he could deny one of the premises such as denying Premise 4 that his wife's prognosis is poor. Or he might modify one of the premises leading to an alternate conclusion such as qualifying Premise 2 with the provision "unless time is needed for my son to travel home from Afghanistan to see his mother before she dies." The question is how does one rationally choose among these various options? This difficulty has been called by some philosophers of healthcare the problem of underdetermined decision conditions where surrogates like Mr Casey face the challenge of identifying and prioritizing the relevant facts that patients would have considered had they been able to make decisions.44
A second objection noted by Harman et al35 is that a deductive model falsely assumes that some of premises are moral, while others are neutral. Recalling the surrogate example again, Premise 1 is certainly a moral premise, and Premise 2 is seemingly morally neutral. However, is it obviously a nonmoral premise in Premise 2 about what "an unnecessarily prolonged life" is? It is conceivable that Mr Casey might perceive this premise in a moral and not a factual way, believing that no life is prolonged unnecessarily no matter what the quality. Of course, we could argue about this moral value, but the point is that states of affairs may be classified by SDMs as good or bad independently of deductively reasoning about them. This thwarts attempts to derive unambiguous rationality from deductive reasoning. Of course, Harman et al35 do not think that deductive moral reasoning is never possible or that it is never carried out in everyday thinking, but just that moral reasoning may be difficult to apply in real-life scenarios. Because of this, assessing the adequacy of a surrogate's reasoning in everyday life is all the more perplexing.
Let's say we know that Mrs Casey would not want to be intubated, ventilated, and on continuous dialysis in her condition. What if Mr Casey, however, believed that by requesting that the ventilator be withdrawn and that the continuous dialysis stopped, he was in effect killing his wife? From Mr Casey's standpoint, there is a conflict between his wife's wishes and nonmaleficence, or doing no harm. As practitioners, perhaps we would try to reassure Mr Casey that his wife is already dying because of the natural course of an illness and that we are prolonging her life by keeping her alive artificially on machines. Moral psychologists, however, have shown how deeply embedded our moral appraisals of situations are, making it difficult for individuals to reframe the ethics of situation from a different vantage point.
For example, Knobe and Doris27 elucidated how a person's appraisal of his/her moral accountability varied with his/her perception of the moral status of an actual or potential action. Individuals labeled the moral rightness and wrongness of an action based on the moral rightness and wrongness of foreseen adverse effects. An individual may want to bring about a desired state of affairs, yet be cognizant that in doing so he/she might also be bringing about another unintended or undesirable effect or outcome. In choosing to discontinue his wife's ventilator, Mr Casey might primarily intend to be carrying out his wife's preferences but yet be aware that in doing so there is the adverse effect of hastening her death. According to Knobe and Doris, if the agent deems this unintended effect morally wrong, then they might assign themselves moral guilt from making certain choices.
Knobe and Doris27 further explain how moral decision making can be variously affected by different perceptions of causation and linkages among chains of events. If the decision was made to discontinue the ventilator from Mrs Casey who subsequently died an hour later, we could offer various explanations about what exactly caused her death: we could say the lack of oxygenation caused the patient's death. Or that God's will caused the death. Or that Mr Casey's decision itself to stop the ventilator caused the patient's death. Or that the patient's previously written wishes caused the death. As the decision maker choosing whether the ventilator is to be removed, Knobe and Doris would likely contend that we would have a perception of causation before we make a decision. And how we judge the moral rightness or wrongness of the causal explanation itself influences how we ascribe moral rightness or wrongness to the decisions we make. If we think that the decision to stop the ventilator primarily caused the patient's death, and this causal picture of events is morally wrong because it is tantamount to an act of murder, then we would likely consider any decision to stop the ventilator as morally wrong. If we think that the patient's underlying illness is what primarily caused the patient's death, then we might be more likely consider the decision to stop the ventilator as morally permissible or obligatory.
Because both a perception of causation and a moral valuation of that causation precede one's belief about his/her own moral culpability in a decision, it is important that practitioners inquire about how surrogates are assessing the chain of events surrounding a patient's medical condition.
This has implications for both researchers and clinicians. Regarding research on SDMs at EOL, Shapiro18 notes that a large portion of empirical research targets how accurately surrogates mirror or reproduce the judgments of patients who lack capacity to make healthcare decisions. Moreover, intervention research such as the seminal SUPPORT study45 has mainly focused on strategies to improve patients' communication of their wishes and SDMs' ability to follow these directives. Yet as this article's discussion has shown, moral psychology suggests it might not be possible for SDMs to follow the ethical standards these research investigations are based on. Hence, researchers should seek to develop conceptual and theoretical models that identify variables and their relationships that are central to how surrogates actually make decisions on behalf of another at the end of life.
For clinicians, aiding surrogates begins with the basic recognition that real-world decisional processes are often multidimensional, dynamic, and difficult to systematize into a one-approach-fits-all mentality.46 Clinicians can expect that patients and surrogates will often change their minds about what kind of care and treatment they want and consider criteria and values in their care beyond that of what the three-standard hierarchy entails. Helping them verbalize and think through their decisions can help them make choices that are reasoned and that they are at peace with. Discuss with surrogates what their role is and anticipate that some surrogates may prefer to act more as a reporter of patients' preferences than as a decision maker.17
Surrogate decision making has largely been based on the normative ideal of the three-standard hierarchy and its plausibility of being applied in everyday practice.8,18 This article has reviewed five assumptions implicit in this hierarchy and suggested that, when viewed from the perspective of moral psychology, it becomes compelling that there may be other factors and values that surrogates consider when attempting to carry out the wishes of a decisionally incapacitated patient. According to the philosopher Immanuel Kant,47 if one claims individuals ought to do something, then one is also implying that they have the ability to actually do it. In the case of SDMs like Mr Casey, even though he might know he "ought" to follow his wife's stated preferences, the emotional, psychological, and environmental complexity surrounding his wife's serious state of health might not make strictly abiding by the three-standard hierarchy cognitively feasible.
The reader may be left wondering what Mr Casey decided. However, we leave that to the reader's own imagination so that one's own beliefs and assumptions come to the surface about what ought to happen in this case. No matter how we envision Mr Casey's decision unfolding, suffice it for now to say that healthcare professionals have a responsibility to help SDMs, like Mr Casey, in a way that honors patients' wishes to the greatest extent possible and minimizes the turmoil faced in this difficult role.
The authors thank Pamela Grace, PhD, APRN, FAAN, associate professor at the Boston College Connell School of Nursing, and James Bernat, MD, and Sharona Sachs, MD, for their helpful comments on earlier drafts of this article.
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