The Scholar at Work

My thirteen years as president of Hastings have been rich in solidarity. Now for some solitude, and a new adventure: Cynthia and I will relocate to Cape Cod, a place rich in family memories. I'll explore the roads and trails on my bicycle and, if I can become a competent kayaker, the waterways. Some of my best thinking has come while riding. I'll have a study there, a place to think and write. I will continue to support the initiatives we've begun at the Center, especially bioethics in the public interest and the flourishing of bioethics internationally. The challenge is to balance solitude and solidarity. Next year I'll be the Terry Visiting Scholar at Yale, a wonderful chance to discuss ideas with students and faculty there. I'm considering other opportunities to share what I've learned and to learn from others. To everyone, thanks for your patience, wisdom, and support. May your next adventure be surprising and fulfilling.     

From theory to practice

As I prepare to start medical school this fall and think back on my two years as a research assistant at The Hastings Center, I'm struck by how much I've learned and yet how much remains unknown to me. After two years of lunchtime conversations, project meetings, and debates in the research assistants' office, discussing issues ranging from reproduction to end‐of‐life care has become almost a way of life. At the same time, I'm reminded of a story my mom told me about her childhood piano teacher, Miss Belser, who told her that while she could certainly learn to play all the notes in the Moonlight Sonata, she was too young to know the heartache that makes the notes become music.     

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.     

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.     

The Clue

As I stood outside of Carlos's room, I felt caught on the horns of a dilemma. It seemed impossible to truly “be there” for Carlos without sacrificing my other intern duties. This tension pervaded much of my residency training, as I often found myself spending more time completing chart notes, answering pages, and giving sign out than I did at the bedside with my patients. I knew I had a duty to “do my job”—I could not let my team down. But what about my duty to Carlos, a duty to act on my intuition and try to “get to the bottom” of his illness, if that was even possible? And what about my thirteen other patients? Wasn't I was their doctor as well? I have spent countless hours studying the ethical frameworks for medical rationing. And yet no framework could have told me how to weigh my intuition in that crucial moment of decision‐making, or when it was okay to leave a few notes unfinished in order to have the time to talk with Carlos. Suddenly, I knew what I had to do.      

There Are All Kinds of Rights

Some years ago I received a phone call telling me that my mother, then in her eighties, had been found wandering the street outside her home. It was the first indication my wife and I had of Alzheimer's disease. We arrived to discover that my mother was incoherent, with the house in disorder, bills unpaid, and perishable food in the night table rather than the refrigerator. Having spent much of my career trying to improve the assessment of decisional capacity, in part to avoid unnecessary deprivation of decision‐making rights, I did not take lightly the step to have my mother declared incompetent. But it was necessary. This episode has been on my mind since I returned recently from a conference in Paris devoted to the United Nations Convention on the Rights of Persons with Disabilities.     

Empty Spaces

“I'm Jewish, you know, and my mother said, ‘Always trust the rabbis.’” I never heard Mr. Weisman's refrain from his own lips. I never heard him say any words all. By the time I met him he was in a vegetative state, a man on the precipice of invisibility—white hair, thin pale limbs, melting into sheets of the same color. When I think about Mr. Weisman, I see empty spaces—the absence of his voice, the too‐large bed for his shrinking frame, the always‐empty chair by his bedside, and most of all, the myriad gaps in his life story. He was what in hospitals is often called a “patient alone”: someone who lacks decisional capacity and has no surrogate to make medical decisions for him. Mr. Weisman's aloneness prompted his primary team to consult our bioethics service in order to formulate goals of care for him, including the possibility of hospice care.     

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.     

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.     

The Intimate Responsibility of Surrogate Decision‐Making

Daniel Brudney's clear‐headed analysis, in this issue of the Hastings Center Report, of the difference between a patient's and a surrogate's right to make medical treatment decisions contributes to a longstanding conversation in bioethics. Brudney offers an epistemological and a moral argument for the patient's and the surrogate's right to decide. The epistemological argument is the same for both parties: the (competent) patient has a right to decide because she is presumed to know her own interests better than anyone else, and the surrogate is entitled to make decisions because she knows the patient better than anyone else. However, argues Brudney, the moral arguments are not parallel. The patient's moral right to decide for herself is an exercise of autonomy, but the only ground for the responsibility held by the surrogate, says Brudney, is that she knows the patient better than the health care professionals do. If in fact that's not the case, then she forfeits her right to be the patient's surrogate. For all the clarity and force of his argument, I think Brudney may be barking up the wrong tree. In cases of proxy decision‐making, it's intimacy, not knowledge, that does the heavy moral lifting.     

On Being Fired: When Patients or Their Parents Fire Their Physician

Wait, what? I've been fired?” I repeated, in the middle of morning rounds in the neonatal intensive care unit. Finally, the nurse who was taking care of our patient, Angela, responded, “Her parents fired you last night. They've already called Patient Relations. They want a new doctor.” My heart sank. Only days into my block of service time as the attending physician in the NICU and I was fired, axed, canned, rejected by a family. How could this have happened? On my first day of service, I had introduced myself to Angela's parents, and I had then met with them daily to review results and the plan and to answer their questions. I thought we had connected well. I thought I had done everything right. I thought they trusted me to care for their daughter.     

An Open Letter to Norman Cantor Regarding Dementia and Physician‐Assisted Suicide

Dear Norm, Thank you for sharing such a personal and heartfelt essay. I have been asked by the editors to comment. Reading it inspires me to do so in a similarly heartfelt way. Although I don't know you well, I thought I'd write to you as if you were my patient. I share your sense that Alzheimer disease is a terrible scourge. I've seen much of this disease over a lifetime of practice, and I deeply understand its ravages and the debility and suffering it causes. But what you propose is not a good solution for the problems that Alzheimer disease poses for patients, families, and society. It will ultimately do far more harm than good. Please let me try to explain.     

“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.     

field notes

I'm snowed in at The Hastings Center, looking out the window at the Hudson, and I'm thinking a lot about words. At a recent lunchtime talk, the term “eugenics” came up. The implication was that if something is “eugenics,” then it's wrong—end of story. But as somebody pointed out, that kind of rhetoric is too easy. It becomes a stand‐in for an ethical argument and allows us to skip the actual thinking. Why is eugenics bad? What kind of eugenics are we even talking about? Surely the Nazi model is not the only game in town; is there a sense in which simple mate choice could be a form of eugenics? I won't attempt to answer these questions here. My point is only that we should remember to ask them. Something similar occurs in science and medicine. All too often, suggestive phrases are used instead of step‐by‐step reasoning.     

The Stress Test

I felt good about myself, driving to the free medical clinic that evening. A full professor at a medical school, leaving my warm home on a cold night after a day at the hospital, seeing patients in clinic in the morning and teaching second‐year students medical ethics in the afternoon (autonomy was the theme; we'd covered beneficence and maleficence earlier in the week). Once a month, patients with cardiac problems come to the clinic, and this was the night. Two students presented the patient, a middle‐aged woman with chest pain. Their presentation was disjointed, in part because of their inexperience, in part because she spoke no English and her story was obtained with the help of a translator. Her eyes rarely met mine; she kept glancing at the translator. I auscultated her heart and lungs, letting the students listen through my stethoscope. What to do now? Had she been a patient that morning back in my clinic, I would have thought to myself, “I can't get a good history; why not do a stress test?” I thought, for what seemed like an eternity: If I send her for a stress test, that will deplete the funds needed for other patients. How important is this test? Is it really necessary? If I send her for a stress test, will someone with a suspicious mass on their chest x‐ray not be able to get a CT scan because no money is left?     

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.     

Home

“Where's Dr. Tunzi?” Flor bellowed from the waiting room. “Is he here today?” Tattooed and built like a short middle linebacker, Flor is one of my favorite people. Despite schizophrenia, hepatitis C, and diabetes, she lives up to her name with a colorful and sunny personality. She and her partner, Nancy (a bipolar breast‐cancer survivor with chronic pain due to severe osteoarthritis of the hip), have been my patients for about fifteen years, since I first met them at the small homeless clinic I help staff. I was away one day last year when Flor and Nancy came in. It would be an understatement to say that it wasted everybody's time. But “team care” and “patient‐centered medical home” are the buzzwords of the day.     

On Avoiding Deep Dementia

Some people will confront Alzheimer's with a measure of resignation, a determination to struggle against the progressive debilitation and to extract whatever comforts and benefits they can from their remaining existence. They are entitled to pursue that resolute path. For other people, like myself, protracted maintenance during progressive cognitive dysfunction and helplessness is an intolerably degrading prospect. The critical question for those of us seeking to avoid protracted dementia is how best to accomplish that objective. One strategy is to engineer one's own death while still mentally competent to do so (even in the stage of mild dementia). If I were to use a preemptive strategy in the face of a dementia diagnosis, I would probably choose to stop eating and drinking, a process known as voluntarily stopping eating and drinking. An alternative tactic for avoiding prolonged dementia would be to allow oneself to decline into moderate dementia—thus losing capacity to perform self‐deliverance or even to make serious medical decisions—but before getting to that point to provide advance instructions rejecting prospective life‐sustaining medical interventions. These advance instructions would authorize palliative but not curative measures. My current personal instructions define the point of intolerable cognitive decline triggering medical nonintervention as “mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.” These instructions dictate allowing my demise at a point of moderate dementia when I may not be perceptibly suffering, when I may still be getting some rudimentary satisfaction from my debilitated life, and when I no longer recall the preoccupation with personally intolerable indignity that motivated my instructions. Can I expect that my advance instructions will be implemented in those circumstances? Is it lawful, and is it moral for a surrogate decision‐maker and associated caregivers to allow an uncomprehending, ostensibly content but demented individual to die? My analysis herein contends that it is not only lawful and moral but also legally required to implement clear, considered advance instructions even at a stage of moderate dementia.     

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.