The Different Moral Bases of Patient and Surrogate Decision‐Making

My topic is a problem with our practice of surrogate decision‐making in health care, namely, the problem of the surrogate who is not doing her job—the surrogate who cannot be reached or the surrogate who seems to refuse to understand or to be unable to understand the clinical situation. The analysis raises a question about the surrogate who simply disagrees with the medical team. One might think that such a surrogate is doing her job—the team just doesn't like how she is doing it. My analysis raises the question of whether (or perhaps when) she should be overridden. In approaching this problem, I focus not on the range of difficulties in practice but on the underlying moral conceptual issue. My concern will be to show that the moral values that underpin patient decision‐making are fundamentally different from those that underpin surrogate decision‐making. Identifying the distinctions will set parameters for any successful solution to the “Who should decide?” question. A patient has a specific kind of moral right to make her own medical decisions. A surrogate has no analogous moral right to decide for someone else. We want the surrogate to make the decision because we believe that she has a relevant epistemological advantage over anyone else on the scene. If and when she has no such advantage or if she refuses or is unable to use it, then there might not be sufficient reason to let her be the decision‐maker.     

It's All Relative

In this issue of the Hastings Center Report, Daniel Brudney suggests that clinicians have an overly deferential attitude toward their patients’ surrogate decision‐makers that is rooted in a wrongful investment of moral authority. He maintains that surrogate decision‐makers have no moral right to decide for their loved ones and that their value in the decision‐making process is limited to their knowledge of their loved one's preferences. If operationalized, Brudney's framework would ease the way for clinicians to remove a surrogate who cannot provide information relevant to the patient's preferences and to resort to a paternalistic model of decision‐making. Brudney fails to consider that the value of the surrogate does not flow from the surrogate, but rather from the patient's moral claim to have decisions made for him or her by a loved one. This claim recognizes that surrogates have intrinsic value through their relationship to and knowledge of the patient. Bioethics consultation services can assist clinical teams in engaging with the human crowd that surrounds each patient and navigating conflicting values and goals. This relational approach embraces the “mire and blood” that is endemic to relationships and clinical encounters.     

Managing Conflicts between Physicians and Surrogates

Two articles in this issue of the Hastings Center Report explore two sides of the same problematic coin. In “The Limits of Surrogates’ Moral Authority and Physician Professionalism,” Jeffrey Berger discusses the moral problem of a surrogate refusing a treatment, palliative sedation, on behalf of a patient whose suffering is refractory to intensive palliative efforts provided by a multidisciplinary team. In “After the DNR: Surrogates Who Persist in Requesting Cardiopulmonary Resuscitation,” Ellen Robinson and her colleagues analyze data from a study of cases in which physicians wished not to perform cardiopulmonary resuscitation on patients whom they thought it would harm. Both articles begin from the idea of a professional determination about a physician's duty to a patient that conflicted with a surrogate's determination about what should or should not be done for that patient. Berger's argument stops just short of a solution, however, because a physician's professional obligation to help patients, even within guidelines set by other professionals, is insufficient protection for patients. But if Berger's theory is right—that sometimes surrogates lack moral authority to make decisions on behalf of patients—then the Robinson team has developed a careful and public process for attending to that conflict.     

Decisions and Authority

This issue of the Hastings Center Report (January‐February 2017) features three articles exploring aspects of decision‐making for others. In the first two, the focus is on the limits of surrogate decision‐makers’ authority when the surrogates’ judgments about a patient's treatment conflict with the physicians’. If a physician decides that a patient will not benefit from CPR, for example, but the patient's surrogate insists on it, is the physician obliged to proceed with the procedure? Or can the physician, pointing to a duty to provide good care to the patient and not to cause the patient to suffer, get a do‐not‐resuscitate order for the patient—even in the face of the surrogate's objections? These are the questions that animate the first article, in which a group of authors report on a policy implemented at Massachusetts General Hospital to help doctors who face this dilemma. The second article, by physician Jeffrey Berger, flips the questions. If a physician decides that a patient's intractable suffering requires palliative sedation, may the surrogate prevent it anyway? Or can the physician, pointing to a duty to alleviate the suffering, administer palliative sedation even in the face of the surrogate's objections? Such circumstances, says Berger, show the need for conceptual work delineating the limits of surrogates’ authority and practical work on mechanisms for doing so—protecting patients and giving physicians a clear route to follow.      

Capacity for Preferences: Respecting Patients with Compromised Decision‐Making

When a patient lacks decision‐making capacity, then according to standard clinical ethics practice in the United States, the health care team should seek guidance from a surrogate decision‐maker, either previously selected by the patient or appointed by the courts. If there are no surrogates willing or able to exercise substituted judgment, then the team is to choose interventions that promote a patient's best interests. We argue that, even when there is input from a surrogate, patient preferences should be an additional source of guidance for decisions about patients who lack decision‐making capacity. Our proposal builds on other efforts to help patients who lack decision‐making capacity provide input into decisions about their care. For example, “supported,” “assisted,” or “guided” decision‐making models reflect a commitment to humanistic patient engagement and create a more supportive process for patients, families, and health care teams. But often, they are supportive processes for guiding a patient toward a decision that the surrogate or team believes to be in the patient's medical best interests. Another approach holds that taking seriously the preferences of such a patient can help surrogates develop a better account of what the patient's treatment choices would have been if the patient had retained decision‐making capacity; the surrogate then must try to integrate features of the patient's formerly rational self with the preferences of the patient's currently compromised self. Patients who lack decision‐making capacity are well served by these efforts to solicit and use their preferences to promote best interests or to craft would‐be autonomous patient images for use by surrogates. However, we go further: the moral reasons for valuing the preferences of patients without decision‐making capacity are not reducible to either best‐interests or (surrogate) autonomy considerations but can be grounded in the values of liberty and respect for persons. This has important consequences for treatment decisions involving these vulnerable patients.     

Better Guidance for Surrogates

The March–April issue of the Hastings Center Report offers another in a series of articles over the last few years on the structure and the ethics of surrogate decision‐making. Here, Daniel Brudney addresses how to help the surrogate deal with a treatment decision. A core insight he offers is that the structure of the surrogate’s decision has been misunderstood and the misunderstanding makes the task yet harder. As usually understood, the surrogate is supposed to be guided by the question, what would the patient choose, if the patient were making the choice herself? Brudney argues that this conception is impossible, and that the surrogate’s task is instead to consider the patient’s best interests, as illuminated in part by the patient’s expressed values and past choices. This understanding leads, he argues, to a different guiding question: what could the patient choose, given her values?     

Decision‐Making for an Incapacitated Pregnant Patient

Decisions about continuing or terminating a pregnancy touch on profound, individualized questions about bodily integrity, reproductive autonomy, deeply held values regarding one's capacity for parenthood, and, in the case of a high‐risk pregnancy, the risks one is willing to take to have a baby. So far as possible, reproductive decisions are made between a patient, in some cases her partner, and her medical provider. However, this standard framework cannot be applied if the patient lacks decision‐making capacity. In this essay, we discuss one such case that came before our clinical ethics team. We describe the challenges of respecting a patient's reproductive preferences when the patient cannot share what those preferences are, and we argue that decisions regarding reproductive health care should not be treated with exceptionalism. Rather, they should proceed under the normal processes of surrogate decision‐making, including the application of substituted judgment. This approach enables us to take the patient's values into account when considering the questions implicated in reproductive health care, just as we do for other kinds of health care decisions in which a patient's deeply held values are salient.     

You Can't Always Get (or Give) What You Want: Preferences and Their Limits

People who lack decision‐making capacity may be able to communicate preferences, which can and should inform surrogate decision‐making on their behalf. It is unclear whether making a further distinction about “capacity for preferences,” as Jason Wasserman and Mark Navin propose in this issue of the Hastings Center Report , would improve the process of surrogate decision‐making. Anyone who is regularly involved in surrogate decision‐making or who has worked to articulate decision‐making standards and processes can think of cases in which a patient's voice was ignored or his or her preferences and ability to communicate them overlooked. However, we can also think of cases in which it was unclear whether information provided by a patient, recently or in the past, should have been characterized as a preference relevant to a medical decision that the patient lacked the capacity to make. We should also recognize that clear preferences of a patient who lacks decision‐making capacity may conflict with the limits of another person or of a family's resources such that these preferences cannot guide a surrogate's decision. This patient will not get what he wants. A situation in which preferences are known and make sense but cannot be applied in a feasible way demonstrates the limits of the medical decision‐making framework concerning care that is not covered by medical insurance.     

A Surgeon's Dilemma

A thirty‐year‐old single mother with recurrent, metastatic, treatment‐refractory cancer presents to the emergency room with severe difficulty breathing due to an obstructive tumor in her neck, compounded by progressive disease in her lungs and a new pulmonary embolism. She cannot be safely intubated and would require an emergent awake tracheotomy. Even if the airway can be successfully secured surgically, the likelihood that she will be able to be weaned from mechanical ventilation is very low. The surgeon, a young mother too, appreciates the patient's desire for more time with her toddler. But the surgeon knows the significant risk of surgery, the massive responsibility she would accept in trying to get the patient through it, and the emotional toll of an intraoperative death on surgical staff. And she can imagine the second‐guessing that will come during the inevitable morbidity and mortality conference if the patient should die in the perioperative window. Yet the surgeon does not want to take the “easy” way out; after all, critically ill patients undergo aggressive resuscitation all the time. What should she do?     

“I am not interested in talking with you.”

Mr. M is an eighty‐five‐year‐old who presented to the hospital with congestive heart failure exacerbation, pneumonia, altered mental status, and sepsis. A physician determines that he lacks capacity, and the team in the intensive care unit looks to the patient's daughter, Celia, as his surrogate decision‐maker because she is named as an agent in his medical power of attorney form. While in the ICU, Mr. M suffers acute respiratory distress secondary to pneumonia and thus requires intubation. Celia accepts several life‐sustaining interventions, but she sporadically refuses other medically indicated therapies. Although providers explain the importance of the ICU insulin regimen for glucose control, she either refuses the insulin or requests a lower dose. The health care team believes that it is providing substandard care and that Celia's medical decisions are not in the patient's best interests, so they request an ethics consultation. When the clinical ethicist attempts to talk with Celia, she refuses to speak with him, saying flatly, “I am not interested in talking with you.” The clinical ethicist meets with Celia on a couple of occasions, but she consistently refuses to have a conversation with him. He wonders if the patient's surrogate decision‐maker can refuse a clinical ethics consultation and is unsure what his next steps should be.     

Equity Care

An eight hundred-square-foot house greets me and a licensed practical nurse. We walk on uneven, disintegrating concrete steps before entering the patient's daughter's home, and we can see a haze of cigarette smoke before we enter the living room. Although the patient is old enough for retirement, she tells me that, if it were up to her, she would still be working. Noticing the medical equipment occupying her room—oxygen, pulse oximeter, and blood pressure machine—I am reminded that our health system is trying, like many other systems across the country, to manage people's chronic illness better by bringing technology into patients’ homes in hopes of preventing hospital readmissions. For this patient, the hope is that, if she gets symptoms that suggest another exacerbation of her chronic obstructive pulmonary disease, she can manage it herself. If I hadn't spent hundreds of hours in patients’ homes, I would have a low threshold for ordering home-based nursing and telehealth; it would often seem like a good solution.     

Patient Care to Public Health to Synthetic Biology

The January‐February 2018 issue of the Hastings Center Report includes pieces addressing patient care concerns that lie at the original core of bioethics and pieces that reflect the field's growing breadth. Among the pieces getting at the original core is an article by philosopher Daniel Brudney on the moral values underpinning surrogate decision‐making. The article and the two commentaries that follow it contribute to the debate on the moral authority of surrogate decision‐makers. Several items in the issue take up matters of public health and health policy. For example, the lead article, by Nir Eyal, examines the ethics of using inconvenience—waiting lists and the like—to constrain the consumption of health care services, and a commentary by Lawrence Gostin examines the regulation of sugary beverages. A supplement to the issue contains a special report about the tools and processes used to assess the impact of emerging technologies, with a focus on synthetic biology.     

Waiver of informed consent,cultural sensitivity,and the problem of unjust families and traditions

To be autonomous, a person must also have authentic moral values. She must act on her own values, not on values that were improperly pressed upon her. To respect a patient's autonomy, then, a caregiver must do more than carry out her requests. The caregiver must honor the patient's authentic requests. But how to do that?     

One Ventilator Too Few?

Sometimes it's better to be lucky than good. As new blood filled our young patient's veins, her breathing became regular and her pulse full. She was so far gone I would not have expected her to recover consciousness for a day, if at all, but within an hour, she began to wake up. We removed the breathing tube a couple of hours later— no ventilator ever needed. As life‐sustaining technology becomes more widely available in fortunate parts of the developing world, benefits come with complications. The temptation is to focus on the thing—the ventilator itself—as the crucial element and press to buy more, mistaking the problem for one of resource scarcity only. But we need a culturally relevant ethical framework to guide the use and withdrawal of ventilators and similar life‐sustaining tools. Resource scarcity is only part of the problem. Buying additional ventilators only defers allocation decisions and entirely fails to address end‐of‐life suffering. It is unsustainable in Rwanda; it is a dubious solution anywhere. The intangible need for an ethical framework hides beneath apparent scarcity and, when this need is not addressed and luck runs out, one salvageable patient can die for want of a ventilator that serves only to prolong the suffering of another.     

Genetic Privacy,Disease Prevention,and the Principle of Rescue

Suppose that you have deeply personal information that you do not want to share. Further suppose that this information could help others, perhaps even saving their lives. Should you reveal the information or keep it secret? With the increasing prevalence of genetic testing, more and more people are finding themselves in this situation. Although a patient's genetic results are potentially relevant to all her biological family members, her first‐degree relatives—parents, children, and full siblings—are most likely to be affected. This is especially true for genetic mutations—like those in the BRCA1 and BRCA2 genes—that are associated with a dramatically increased risk of disease. Fortunately, people are usually willing to share results with their at‐risk relatives. Occasionally, however, a patient refuses to disclose her findings to anyone outside her clinical team. Ethicists have written little on patients’ moral duties to their at‐risk relatives. Moreover, the few accounts that have been advanced are problematic. Some unnecessarily expose patients’ genetic information to relatives who are unlikely to benefit from it, and others fail to ensure that patients’ most vulnerable relatives are informed of their genetic risks. Patients’ duty to warn can be defended in a way that avoids these problems. I argue that the duty to share one's genetic results is grounded in the principle of rescue—the idea that one ought to prevent, reduce, or mitigate the risk of harm to another person when the expected harm is serious and the cost or risk to oneself is sufficiently moderate. When these two criteria are satisfied, a patient will most likely have a duty to warn.     

Health Care Decisionmaking by Children Is It in Their Best Interest?

The argument for children's rights in health care has been long in the making. The success of this position is reflected in the 1995 American Academy of Pediatrics recommendations for the role of children in health care decisionmaking, which suggest that children be given greater voice as they mature. But there are good moral and practical reasons for exercising caution in these health care situations, especially when the child and parents disagree. Parents need the moral and legal space within which to make decisions that will facilitate their child's long-term autonomy, not only her present-day autonomy. Moreover, third-party intrusion, by physicians or the state, should be resisted unless negligent and abusive decisions are in the making.     

Are Alcoholics Less Deserving of Liver Transplants?

When does behavior trigger a lesser claim to medical resources? When does chronic drinking, for example, mean that one has a lesser claim to a liver transplant? Only when one's behavior becomes a callous indifference to others' needs—when one knows the consequences of heavy drinking and knows that by drinking one may end up depriving someone else of a liver.     

A Good Death

A good death is hard to find. Family members tell us that loved ones die in the wrong place—the hospital—and do not receive high‐quality care at the end of life. This issue of the Hastings Center Report offers two articles from authors who strive to provide good end‐of‐life care and to prevent needless suffering. We agree with their goals, but we have substantial reservations about the approaches they recommend. Respect for the decisions of patients and their surrogates is a relatively new and still vulnerable aspect of medical care. For thousands of years, patients and surrogates had no say in medical decision‐making. Today, standards support shared decision‐making, but these articles both carve out exceptions to those standards, limiting the rights of patients and families in decisions about specific end‐of‐life treatments. As bioethics consultants in an acute care setting, we frequently confront conflicts similar to those described by Jeffrey Berger and by Ellen Robinson and colleagues. In such cases, our service emphasizes redoubled efforts at communication and mediation. Focusing on goals and values, rather than interventions, produces the best possible collaboration in health care decision‐making. Cases in which we would overturn a surrogate's recommendations regarding palliative sedation or do‐not‐resuscitate orders are rare and require careful processes and clear evidence that the surrogate's choice is contrary to patient values.     

Competence in Plain English

Like many other bioethicists, I often give talks on clinical topics that may touch on the patient's right of autonomy with regard to medical treatment and, from there, may move to questions about whether said patient has the capacity to exercise said right. When I get to that subject, I might ask, “Is this person competent to refuse treatment?” A stunned silence falls over the room, until finally a hand shoots up. “‘Competent’ is a legal term,” I am instructed. “Don't you mean to ask whether he has the capacity to make decisions for himself?” The tone suggests that I'm being helped to make a very important distinction. But it's not a very important distinction; and it's misleading to boot.     

The medical minimum: zero

The question is what the mandated medical minimum for all should be. The correct answer is zero. That is to say, the government should not be forcing anyone to pay for anyone. The most popular arguments within the liberal framework, presumed to be shared by all, are briefly surveyed. Health care is provided by someone to someone else, and that someone else should either be paying for it, or recognize that someone is providing it charitably to him or her. Compelling someone else to pay for it is something we have no basic right to do.