Should We Call It Fraud?

I recently had the opportunity to chair an interdisciplinary workshop on stem cell tourism—the practice, that is, of marketing unproven stem cell therapies for a wide range of diseases and disabilities, drawing patients from around the world. The goal of the event was to produce a statement to educate Canadian family physicians about this troubling and exploitative phenomenon. We wanted to keep the statement basic and straightforward. “Let's simply call stem cell tourism what it is. It is fraud,” someone suggested. I wrote the word “fraud” on the flipchart at the front of the room, and everyone seemed comfortable with this frank declaration. But when I went to write up the first draft of our statement, I hesitated.     

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.     

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.     

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.      

Dan Callahan's Press Clips

For more than eleven years, I worked with Dan Callahan as an editor, a liaison with journalists, and a sounding board for ideas. To Dan, every new writing project was a thrill, whether it was for the New Republic or a blog. He consumed a wide range of professional and scholarly literature, followed the news with the eye of a reporter, and called experts when he wanted to learn more about something he had read. The result was a volcanic bubbling of story ideas. If he didn't turn them into articles or books, I sometimes had the feeling that he might burst.     

The outsider

On occasion, I am appointed by our local probate court to help make health care decisions for patients who are no longer capable of making these decisions for themselves. I'll visit my client in the hospital and review his or her chart, and I'll have numerous opportunities to talk about the illness and treatment options with attending physicians, residents, and nurses. My phone calls to them will be returned promptly. If doctors arrive at the conclusion that nothing further can be done for the patient, we'll discuss how best to proceed. This end‐of‐life talk never comes as a surprise to me because I will have been included in the team's decision‐making process, in the manner of professionals interacting with another professional. Last fall, I became a family surrogate decision‐maker after my mother was hospitalized over the course of a few months, for a number of reasons, in three hospitals in New York. I assumed I would manage her care as I did my clients’, with a sense of control and involvement in the process, but I quickly learned that I had in fact entered a kind of alternate universe as far as decision‐making was concerned.     

Patient as Gift

“Sit down,” Mr. R demanded. “I've got something to say to you.” I shot the medical student a querying glance as we simultaneously sunk into our chairs. He continued, “You don't know me, and I got some things to tell you.” I thought I knew Mr. R, and I certainly had some idea of what he was all about. But then he called to me. In his summoning, Mr. R arrested all my preconceived ideas about him. And as the medical student and I began to understand him better, we wanted to know more. We began to engage him more deeply. In the subsequent days, caring for him somehow felt easier, akin to the care one gives a distraught friend rather than a difficult patient.     

Chinese Bioethicists Speak Out on Covid-19, and Others Follow

Shortly after Wuhan, the city where the novel coronavirus was first identified, was placed on lockdown in January, I received an email from two Hastings Center fellows in China: Renzong Qiu, of Renmin University of China in Beijing, and Ruipeng Lei, of Huazhong University of Science and Technology in Wuhan. Attached was a post for our blog, Hastings Bioethics Forum, that raised ethical and legal questions about China's response. “Hegel says, ‘We learn from history that we do not learn from history,’” their piece began. “The recurrence of the coronavirus epidemic in China proves his insight to be right.” This bold report from bioethicists in China was courageous and eye-opening. It was among the first discussions in bioethics of what has since become a global crisis, and it turned out to be the first in a string of commentaries in Hastings Bioethics Forum with insights about the crisis, the issues it raises, and how the world should respond to it.     

A note—and a call—from the weeds

For the past few years I've had the distinct privilege to edit the Hastings Center Report's Policy & Politics column. The column—as indicated by a little block of text at its end—was originally conceived as, and remains, a joint production of HCR and the American Society for Bioethics and Humanities. For me, as column editor, this means that I can accept contributions only from ASBH members. Luckily this presents me with an extremely large pool of talent from which to draw! I am very proud of the fact that a large majority of contributors to the column in the last several years had never written in HCR before I invited them to contribute. But naturally, I don't know everyone, and I can't keep track of everything. I'd love to get even more unsolicited offers of P&P contributions than I already enjoy.     

Nudge or Grudge? Choice Architecture and Parental Decision‐Making

Richard Thaler and Cass Sunstein define a nudge as “any aspect of the choice architecture that alters people's behavior in a predictable way without forbidding any options or significantly changing their economic incentives.” Much has been written about the ethics of nudging competent adult patients. Less has been written about the ethics of nudging surrogates’ decision‐making and how the ethical considerations and arguments in that context might differ. Even less has been written about nudging surrogate decision‐making in the context of pediatrics, despite fundamental differences that exist between the pediatric and adult contexts. Yet, as the field of behavioral economics matures and its insights become more established and well‐known, nudges will become more crafted, sophisticated, intentional, and targeted. Thus, the time is now for reflection and ethical analysis regarding the appropriateness of nudges in pediatrics. We argue that there is an even stronger ethical justification for nudging in parental decision‐making than with competent adult patients deciding for themselves. We give three main reasons in support of this: (1) child patients do not have autonomy that can be violated (a concern with some nudges), and nudging need not violate parental decision‐making authority; (2) nudging can help fulfill pediatric clinicians’ obligations to ensure parental decisions are in the child's interests, particularly in contexts where there is high certainty that a recommended intervention is low risk and of high benefit; and (3) nudging can relieve parents’ decisional burden regarding what is best for their child, particularly with decisions that have implications for public health.     

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.     

Living Donors and the Issue of “Informed Consent”

This essay considers the issue of informed consent as it arose in the context of 1960s living kidney donors. In one of the earliest empirical inquiries into informed consent, psychiatrists Carl H. Fellner and John R. Marshall interviewed donors about their decision-making process and their experience and reflections on donorship. In their much-cited 1970 paper, the physicians reported that living donors, rather than reaching a reasoned, intellectual, and unemotional decision about donating a kidney (as stipulated in the Ethical Guidelines for Organ Transplantation issued by the American Medical Association's Judicial Council), instead made instantaneous and “irrational” decisions about participation. Fellner and Marshall's studies contributed to the public debate and professional discussion about the moral and ethical dimensions of donorship, even as they challenged the developing consensus on informed consent.     

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.     

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.     

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.     

Crossing Boundaries

I met Dan Callahan in 1986—when I came to pitch him. Coming from a sleek office setting near Boston, I was intrigued by The Hastings Center's higgledy‐piggledy environment where so many smart people got to work in a relaxed, inviting atmosphere. I had noticed that the Center was producing a great deal of policy work on a wide range of topics but didn't seem to go further than publishing the highly valuable guidance developed under Dan Callahan's leadership. I ended my pitch, “Look, Dan, where Hastings gets bored and wants to go on to the next topic, my group in Boston gets interested.” To my great pleasure, and despite his skepticism, Dan accepted the pitch. Beyond his generous responsiveness to unproven young people, Dan had many other virtues. For one, he was a boundary crosser.     

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.     

Clinical Trial Portfolios: A Critical Oversight in Human Research Ethics,Drug Regulation,and Policy

Regulators rely on clinical trials for drug approval and labeling decisions. Health systems and clinicians rely on the evidence from trials to determine treatment, and patients rely on it to decide which courses of care to undertake. Many of these stakeholders presume that the careful review of individual studies is enough to address the ethical and scientific questions that arise in clinical trials. In what follows, however, we demonstrate that explicit consideration of trial portfolios—series of trials that are interrelated by a common set of objectives—is crucial. the ethical acceptability and evidentiary probity of individual trials can change depending on the characteristics of the portfolios in which they are embedded. Second, how trial portfolios are composed, how well they are coordinated, and how efficiently they use information determines the balance of risks and benefits they present as well as their different prospects for generating socially valuable information; these three factors also raise distinct questions of justice.     

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.     

Capacity and Relationship

In the lead article in the May‐June 2019 issue of the Hastings Center Report, Aaron Wightman and coauthors consider the guiding principles for making decisions about life‐sustaining treatment for children who have profound cognitive impairments. They argue that the usual standard, which asks decision‐makers to consider what will be in the child's best interests, cannot provide sufficient guidance. Discussing this problem in HCR thirty‐five years ago, the philosopher John Arras proposed addressing it by means of a “relational potential standard,” according to which decisions about providing life‐sustaining treatment to a child should depend in part on whether the child has the capacity to form human relationships. Wightman et al. build on Arras's work, but where Arras had suggested that the capacity to form relationships could be gauged by examining the child's cognitive capabilities, the authors suggest that the medical team should lean heavily on the parents’ views.