The Problem of Clinical Deception and Why We Cannot Begin in the Middle

In this brief commentary, I offer an appreciative yet critical analysis of Abram Brummett and Erica Salter's article, “Mapping the Moral Terrain of Clinical Deception.” I challenge the authors to clarify their choice of the term “deception” (as opposed to “lying” or “dishonesty”), and I explain how these different terms may affect one's moral analysis. I also draw attention to the authors’ claim that veracity is the ethical default of clinicians. I argue that their failure to defend this claim renders their framework more limited in its usefulness than they seem to acknowledge. While their framework does an excellent job of identifying morally salient features of clinical deception, it cannot be used to measure the strength of justification for an act of deception apart from a normative conception of truthfulness.     

Disability and the Damaging Master Narrative of an Open Future

It is sometimes argued that medical professionals should protect a future child's rights by prohibiting disabled parents from using technology to deliberately have a disabled child because disability is taken as an inevitable, severe threat to a child's otherwise “open” future. I will first argue that the open future that allegedly protects a child's future autonomy is precluded by the very conditions needed to develop that future autonomy. Any child's future will be narrowed as they are socialized in a way that gives them the capacity for autonomous choice. However, oppressive master narratives can diminish a future child's autonomy by distorting their narrative identity and constricting their agency. In fact, the open future argument does just this by advancing one of the most damaging master narratives about disability: that disability inevitably and severely restricts a person's autonomy and closes their future.     

Advance Directives and Discrimination against People with Dementia

In the article “On Avoiding Deep Dementia,” Norman Cantor defends a position that I suspect many readers share. In my years writing and speaking on advance directives and dementia, I've found that most people support one of two positions. They are convinced either that advance choices should control the treatment dementia patients receive or that the welfare of a person with dementia should sometimes take priority over earlier choices. As Cantor points out, I support the second position. I agree with several of Cantor's arguments. Where Cantor and I part ways is over the degree of control that advance directives should exert over the care of persons with moderate dementia. Although I don't welcome the prospect of living with dementia, I believe that people with the condition should be represented in the debate over treatment standards. It's not surprising that many, perhaps most, people unaffected by dementia think that their preferences should control the care they would receive as dementia patients. But people taking this position are neglecting the concerns and interests they may have as dementia patients.     

Telos versus Praxis in Bioethics

The authors of “A Conceptual Model for the Translation of Bioethics Research and Scholarship” argue that bioethics must respond to institutional pressures by demonstrating that it is having an impact in the world. Any impact, the authors observe, must be “informed” by the goals of the discipline of bioethics. The concept of bioethics as a discipline is central to their argument. They begin by citing an essay that Daniel Callahan wrote in the first issue of Hastings Center Studies. Callahan argued in this 1973 piece that bioethics had yet to attain the status of a discipline, and he lauded the freedom of being able to define a new discipline. Callahan's essay shares with Mathews and colleague's a peculiarity: neither ever defines what it means to refer to something as a “discipline.” To define a discipline does mean attending to the intended end product of scholarly activity, so I concur with Mathews et al.’s focus on outcomes. But I am concerned that in their argument they confusingly entangle their understanding of an academic discipline's internal goals, its telos, with its potential to have an impact on the external world, its praxis. The confusion that this can bring exposes what I believe is a profound problem within bioethics, the discipline's peculiar and at times intellectually hazardous relationship with its institutional hosts.     

The e-patient and medical students

The recent publicity around the tragic case of Bronte Doyne has highlighted a pressing need in healthcare delivery: the need for doctors to know that their patients, “e-patients,” know medicine. In turn, this requires our medical students to be trained in how best to utilise the potential of e-patients in healthcare delivery.

“I can't begin to tell you how it feels to have to tell an oncologist they are wrong, it's a young person's cancer. I had to, I'm fed up of trusting them.” – Bronte Doyne (Vize 2015)     

The Moral Status of Human‐Animal Chimeras with Human Brain Cells

While there is not unanimity (across time or cultures), almost all who read this commentary will think that both they and a toddler have a moral status higher than that of a rat. For instance, they will think that a third party who has to choose whom to save from death should choose them over the rat, and the toddler over the rat. But what is it about humans that gives us this greater moral status? This question is particularly pressing when considering that scientists have begun creating human‐animal chimeras with brains composed partly or wholly of human cells. In “Human‐Animal Chimeras: The Moral Insignificance of Uniquely Human Capacities,” Julian Koplin focuses on the moral implications of such experiments and those that use (or plan to use) these chimeras to study diseases and treatments. How should we understand the concerns about moral status that have been raised about such chimeras? In this commentary, I interpret these concerns differently from Koplin and respond to his suggestion that the greater one's ability to draw value from certain kinds of conscious experiences, the greater one's moral status.     

Returning Incidental Findings in Low‐Resource Settings: A Case of Rescue?

In a carefully argued article, Haley K. Sullivan and Benjamin E. Berkman address the important question of whether investigators have a duty to report incidental findings to research participants in low‐resource settings. They suggest that the duty to rescue offers the most plausible justification for the duty to return incidental findings, and they explore the implications of this duty for the context of research in low‐resource settings. While I think they make valuable headway on an important problem, in this commentary, I identify a significant difference between the paradigmatic rescue case and the return of incidental findings in low‐resource settings. This difference, I suggest, implies that their framework may be too narrow in scope. If investigators (and their sponsors) really wish to fulfill their duty to rescue, they must consider factors that are left out of Sullivan and Berkman's framework.     

RISK and the Pregnant Body

Reasoning well about risk is most challenging when a woman is pregnant, for patient and doctor alike. During pregnancy, we tend to note the risks of medical interventions without adequately noting those of failing to intervene, yet when it's time to give birth, interventions are seldom questioned, even when they don't work. Meanwhile, outside the clinic, advice given to pregnant women on how to stay healthy in everyday life can seem capricious and overly cautious. This kind of reasoning reflects fear, not evidence.     

The Hang Up

Over the past year, our ethics service has had numerous consultations involving patients who use the emergency department for regular dialysis. Sometimes, they have access to outpatient hemodialysis that they forgo; other times, they've been “fired” from this kind of outpatient facility, and so the ED is their last option. In most of these cases, we're called because the patient is disruptive once admitted to the ICU and behavior plans haven't helped. But the call from a resident this March 2020 morning was different, the patient had end-stage renal disease and often missed hemodialysis, but he wasn't disruptive. “It's just that he comes in after using cocaine, and given scarcity with the coronavirus and ICU beds….” I have come to think that this is one of the more insidious effects of the pandemic: that there will be a resurgence of the view that some patients deserve health care by virtue of their compliant behavior and that those who are nonadherent don't.     

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.     

A Heart without Life: Artificial Organs and the Lived Body

The use of artificial organs is likely to increase in the future, given technological advances, increases in chronic diseases, and limited donor organs. This article examines how artificial organs could affect people's experience and conceptualization of bodies and our understanding of the relation of body to self. I focus on artificial heart devices and argue that these have two conflicting potential influences. First, they may influence people to regard the body as machinelike and separable from the self. Second, they may effect changes to subjective experience that can be understood as changes to the self, confirming the self's embodiment. My primary purpose is to increase our understanding of what might change if it becomes more usual to have a body that is partly nonorganic. But I also argue that the analysis points to potential ethical concerns related to strengthening biomedical conceptions of the body and to the devaluing of bodies and body parts.     

Reality checks

Giving up on our dreams is not easy. I am a neonatologist, and I often watch the parents of my patients wish for the impossible. They come to the NICU with their own stories, their own expectations, and their own values. They have had nine long months to imagine their perfect child and often struggle with learning to accept the hand they have been dealt and the child they really have. Neonatology and geriatrics have a lot in common. Both specialties treat patients who cannot describe their symptoms. Both deal with family members who are serving as surrogate decision-makers. These family members often wrestle with end‐of‐life issues, and they share a tendency to sometimes base their decisions on emotions rather than on the best interests of the patients involved. I know this, but I didn't really understand it until I lived it.     

Glossed Over

I open the glossy cover of my alma mater's alumni magazine. Images of new frontiers in medicine abound—state‐of‐the‐art research buildings and the latest in high‐tech hospital innovations. Nestled among the articles on cutting edge medicine is a feel‐good story about medical students. The article profiles volunteer medical students and their uninsured patients with chronic health conditions. At one site, they are touted as providing “the only medical care.” Indeed. I think back to my medical student days and cringe.     

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.     

Learning from Me Too

For the past year, many around the world have said, “Me Too.” Women, trans folks, and increasingly men have shared their experiences of sexual assault, harassment, and unhealthy power dynamics in their personal and professional relationships. These experiences were not a surprise to people in bioethics, especially as they relate to the control of women's bodies and behaviors that we have observed in medicine, law, and society. In The Hastings Center's work in reproductive contexts, I have learned about women whose reproductive decisions or choices are negatively affected by external forces—either by restrictive laws and policies, explicit counsel from their physicians, or implicit pressures placed on them by society. Any person with a uterus can be forced to take contraceptives if they want access to other medications that could harm a fetus, even when they are not sexually active with men. And some women of color are criminalized for miscarriages. How can those of us working in reproductive ethics be even more attentive to these experiences and to the impact of gendered power dynamics on reproductive decision‐making?     

The woman question in medicine: an update

The Women's Movement has greatly benefitted women in the workplace. What about in their encounters with medicine? This paper reviews the history of physicians’ attitudes toward women and then considers three contemporary areas of medicine in particular: health research relevant to women, health policies, and women's success at working their way into the medical profession. The picture that emerges is somewhat less than rosy. The androcentrism that has been so glaring in the history of medicine has not entirely gone away. Women and their concerns are still considered less important than men's, and women are valued more for what they provide than for who they are themselves. These problems are mostly not the fault of specific physicians or other individuals; they are, rather, systemic problems—the result of social practices and institutions that work together quite impersonally to favor the interests of men over women. Correcting them requires listening to women's voices better than medicine, or bioethics, has so far managed to do.     

Reconceptualizing Autonomy: A Relational Turn in Bioethics

History's judgment on the success of bioethics will not depend solely on the conceptual creativity and innovation in the field at the level of ethical and political theory, but this intellectual work is not insignificant. One important new development is what I shall refer to as the relational turn in bioethics. This development represents a renewed emphasis on the ideographic approach, which interprets the meaning of right and wrong in human actions as they are inscribed in social and cultural practices and in structures of lived meaning and interdependence; in an ideographic approach, the task of bioethics is to bring practice into theory, not the other way around. The relational turn in bioethics may profoundly affect the critical questions that the field asks and the ethical guidance it offers society, politics, and policy. The relational turn provides a way of correcting the excessive atomism of many individualistic perspectives that have been, and continue to be, influential in bioethics. Nonetheless, I would argue that most of the work reflecting the relational turn remains distinctively liberal in its respect for the ethical significance of the human individual. It moves away from individualism, but not from the value of individuality.In this review essay, I shall focus on how the relational turn has manifested itself in work on core concepts in bioethics, especially liberty and autonomy. Following a general review, I conclude with a brief consideration of two important recent books in this area: Jennifer Nedelsky's Law's Relations and Rachel Haliburton's Autonomy and the Situated Self.     

Dr. Douchebag: a tale of the emergency department

“I'm not afraid of dying,” he says, despite his plea on arrival. “Listen up, douchebag. Are you calling my cousin or what?” The emergency department might be the only sphere of human exchange where one party—patients (and sometimes family)—are permitted to insult, threaten, and even spit at the very people on whom they depend for help, while the offended parties—physicians, nurses, and other health care providers—must not only tolerate the abuse, but treat their tormentors. Does the ED's collective duty to greater numbers of patients demand a revised ethos of tough love for extreme cases of misbehavior? Can we ask these patients to leave without legal recourse after extending genuine, compassionate efforts to participate in their care—barring evidence of a medical explanation for their toxic comportment or a mental illness that puts them at risk of harming themselves or others?     

The Doctor‐Patient Relationship (When You're Neither)

Despite what I wrote in my medical school applications, my relationship with medicine wasn't always the torrid love affair I made it out to be. Organic chemistry wasn't really my favorite class (or my second favorite, or my third). My heart didn't actually skip a beat as I waited for protein isolates to complete their snail‐paced race across an agarose gel. And while I certainly enjoyed the surgeries I scrubbed into as an undergraduate, even they lost their charm during the fifth hour of standing at attention, hands glued to my chest, petrified I would break the sterile field or pass out from starvation. For me, a career in medicine was a leap of faith. I had to trust that those flashes of meaningful human interaction I experienced early on would increase in frequency and intensity over the course of my career. Fortunately, I have not been disappointed thus far.