Can Rationing through Inconvenience Be Ethical?

In this article, we provide a comprehensive analysis and a normative assessment of rationing through inconvenience as a form of rationing. By “rationing through inconvenience” in the health sphere, we refer to a nonfinancial burden (the inconvenience) that is either intended to cause or has the effect of causing patients or clinicians to choose an option for health‐related consumption that is preferred by the health system for its fairness, efficiency, or other distributive desiderata beyond assisting the immediate patient. We argue that under certain conditions, rationing through inconvenience may turn out to serve as a legitimate and, compared to direct rationing, even a preferable tool for rationing; we propose a research agenda to identify more precisely when that might be the case and when, alternatively, rationing through inconvenience remains ethically undesirable. After defining and illustrating rationing through inconvenience, we turn to its moral advantages and disadvantages over other rationing methods. We take it as a starting assumption that rationing, understood as scarce‐resource prioritization, is inevitable and, in a society that has goals beyond optimizing health care for individual patients—such as improving societal health care, education, or overall welfare—prudent and fair.     

Laypeople Are Strategic Essentialists,Not Genetic Essentialists

In the last third of the twentieth century, humanists and social scientists argued that attention to genetics would heighten already‐existing genetic determinism, which in turn would intensify negative social outcomes, especially sexism, racism, ableism, and harshness to criminals. They assumed that laypeople are at risk of becoming genetic essentialists. I will call this the “laypeople are genetic essentialists model.” This model has not accurately predicted psychosocial impacts of findings from genetics research. I will be arguing that the failure of the model can be traced to its inability to recognize the complexity of laypeople’s attitudes; its incorrect theory of how beliefs, attitudes, and discourse function; and its blindness to how academics’ own interests can override the available evidence. More specifically, I suggest that the substantial data about laypeople’s deployment of genetics supports what I will call the “laypeople are strategic essentialists model” better than the “laypeople are genetic essentialists model.” The strategic essentialists model holds that people tend to store multiple categories, including multiple causal forces, that they deploy “strategically” to serve context‐dependent goals. It will be difficult for academics to reorient ourselves to model laypeople as sophisticated strategic essentialists rather than as naïve genetic essentialists. Perhaps a little shift, however, will be of value.     

The Next Wave in Health Care Priority Setting

A new problem in health care priority‐setting is currently emerging for wealthy countries: what should be done when a new drug is considered cost effective but implementing it would still be unaffordable? The standard approach to setting priorities in health care rests on cost effectiveness. This approach is now being tested by new drugs that are highly effective but very costly. Because they are so effective, these drugs deliver “value for money” despite their high cost. However, when the targeted condition affects a sizeable number of patients, implementing the drugs becomes unaffordable. There are no easy alternatives. A key virtue of setting health care priorities with a presumptive cost‐effectiveness threshold is that it provides all patients a prima facie equal claim on the available resources, and alternative approaches to addressing affordability face their own challenges.     

On Patient Well‐being and Professional Authority

Two papers in this issue address the limits of surrogates’ authority when making life‐and‐death decisions for dying family members or friends. Using palliative sedation as an example, Jeffrey Berger offers a conceptual argument for bounding surrogate authority. Since freedom from pain is an essential interest, when imminently dying, cognitively incapacitated patients are in duress and their symptoms are not manageable in any other way, clinicians should be free to offer palliative sedation without surrogate consent, although assent should be sought and every effort made to work with surrogates as harmoniously as possible. Ellen Robinson and her colleagues report on the implementation of a policy at Massachusetts General Hospital that supports do‐not‐resuscitate orders when cardiopulmonary resuscitation is likely to be ineffective or harmful, even if surrogates disagree. The “Doing No Harm” policy at MGH allows for what MGH calls a “medically indicated DNR” and what in some other places is called “a unilateral DNR”—the writing of an order not to provide cardiopulmonary resuscitation, regardless of surrogate disapproval. These kinds of DNR policies have emerged in some hospitals across the country and for much the same reason that Berger provides in his argument regarding palliative sedation. I support the reasoning and the policies in both the Berger and Robinson papers. However, as the authors would most likely agree, the problems they aim to remedy are not simply about the scope of surrogate and professional authority. They are also symptoms of inattention to professional obligations and system failures.     

Bystander Ethics and Good Samaritanism: A Paradox for Learning Health Organizations

In 2012, a U.S. Institute of Medicine report called for a different approach to health care: “Left unchanged, health care will continue to underperform; cause unnecessary harm; and strain national, state, and family budgets.” The answer, they suggested, would be a “continuously learning” health system. Ethicists and researchers urged the creation of “learning health organizations” that would integrate knowledge from patient‐care data to continuously improve the quality of care. Our experience with an ongoing research study on atrial fibrillation—a trial known as IMPACT‐AFib—gave us some insight into one of the challenges that will have to be dealt with in creating these organizations. Although the proposed educational intervention study placed no restrictions on what providers and health plans could do, the oversight team argued that the ethical principle of beneficence did not allow the researchers to be “bystanders” in relation to a control group receiving suboptimal care. In response, the researchers designed a “workaround” that allowed the project to go forward. We believe the experience suggests that what we call “bystander ethics” will create challenges for the kinds of quality improvement research that LHOs are designed to do.     

Of Drowning Children and Doubtful Analogies

In this issue of the Hastings Center Report, James Sabin and his colleagues ask what responsibility investigators in a learning health organization have to patients when research—particularly research of which patients might be unaware—illuminates problematic aspects of the patients' care. Sabin and his colleagues were confronted by this question in the midst of designing a randomized controlled trial that sought to determine if an educational intervention targeted at patients with atrial fibrillation and their clinicians reduces underuse of oral anticoagulants. Worried about harm that might befall patients in the control group and fearing that they would be negligent bystanders if they knew these patients were at risk and did nothing, the investigators adopted a “workaround.” But the “workaround,” I suggest, was not a solution to the negligent bystander problem. Nor was it a solution to the problem as I would alternatively frame it—how to address instances of suboptimal patient care identified through research within learning health organizations.     

Unhealthy Partnerships and Public Health: Breaking Free of Industry

In the ambitious new book The Perils of Partnership: Industry Influence, Institutional Integrity, and Public Health, Jonathan Marks argues that far too much baggage is being piled on an old workhorse, conflict of interest. It’s an important concept, he asserts, but public‐sector actors can transgress their ethical obligations even when their relations with industry don’t create conflicts of interest. Yet policy‐makers have been immersed in public‐private partnerships for so long that they do not see the broader implications of such relationships. Marks aims to move the discourse from reassuring terms like “engagement” and “inclusiveness” to concepts that capture the problematic side of the liaisons, like “webs of influence” and “agenda distortion.” Above all, he issues a challenge to public health policy‐makers: Ditch the comfortable hand‐in‐hand industry relationships, which prioritize efficacy over ethics, threatening both the public’s health and the integrity of public health institutions. Adopt instead a paradigm that is “mano a mano,” involving tension, struggle, and, at times, direct conflict with private industry.     

Black Lives in a Pandemic: Implications of Systemic Injustice for End-of-Life Care

In recent months, Covid-19 has devastated African American communities across the nation, and a Minneapolis police officer murdered George Floyd. The agents of death may be novel, but the phenomena of long-standing epidemics of premature black death and of police violence are not. This essay argues that racial health and health care disparities, rooted as they are in systemic injustice, ought to carry far more weight in clinical ethics than they generally do. In particular, this essay examines palliative and end-of-life care for African Americans, highlighting the ways in which American medicine, like American society, has breached trust. In the experience of many African American patients struggling against terminal illness, health care providers have denied them a say in their own medical decision-making. In the midst of the Covid-19 pandemic, African Americans have once again been denied a say with regard to the rationing of scarce medical resources such as ventilators, in that dominant and ostensibly race-neutral algorithms sacrifice black lives. Is there such thing as a “good” or “dignified” death when African Americans are dying not merely of Covid-19 but of structural racism?     

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.      

How Should We Model Rare Disease Allocation Decisions?

When health budgets are insufficient to provide care for all, allocating resources to treat a person with a rare and expensive disorder entails that we cannot treat at least one person with a more common, less expensive disorder. Since any allocation scheme will entail such trade‐offs, how should prudent policy‐makers, concerned about justice and fairness, allocate their community's health resources? In their article in this issue of the Hastings Center Report, Emily Largent and Steven Pearson frame this problem as a conflict between the “rule of rescue” and utilitarian allocation schemes that try to maximize the benefits produced by a given budget. In his article, Norman Daniels discusses the related problem of the “identified victim bias.” I doubt that the problem of crafting an equitable health policy regarding orphan diseases maps onto either of these factors in a way that sheds light on the key moral issues.     

Personalized genomic medicine and the rhetoric of empowerment

A decade after the completion of the Human Genome Project, the widespread appeal of personalized genomic medicine's vision and potential virtues for health care remains compelling. Advocates argue that our current medical regime “is in crisis as it is expensive, reactive, inefficient, and focused largely on one size fits all treatments for events of late stage disease.” What is revolutionary about this kind of medicine, its advocates maintain, is that it promises to resolve that crisis by simultaneously increasing the ability to be “personalized,” “predictive,” “preventive,” and “participatory.” Some call personalized genomic medicine “P4 Medicine,” inscribing these cardinal virtues into the movement's name. All of these putative virtues have interesting implications for the future of health care. In this essay, we are especially interested in the claims that personalized medicine will lead to a more “participatory” or “patient‐centered” approach to health care, in which patients are “empowered” to take more personal control over their care. The rhetoric of patient empowerment is nothing new in health care, but personalized medicine is an interesting case study because it portrays empowerment as one of its key virtues and as a mechanism for fixing the health care “crisis.”     

Whatever Happened to Human Experimentation?

Several years ago, the University of Minnesota hosted a lecture by Alan Milstein, a Philadelphia attorney specializing in clinical trial litigation. Milstein, who does not mince words, insisted on calling research studies “experiments.” “Don't call it a study,” Milstein said. “Don't call it a clinical trial. Call it what it is. It's an experiment.” Milstein's comments made me wonder: when was the last time I heard an ongoing research study described as a “human experiment”? The phrase is now almost always associated with abuses. Asking a prospective subject to sign up for a medical experiment would probably get roughly the same response as asking him or her to sign up for a police interrogation. It wasn't always this way. In the early days of American bioethics, scholars used the word “experimentation” in the same neutral way that they later began to use “research study” and “clinical trial.”     

Using Facts to Moderate the Message

The Public Policy Advisory Network on Female Genital Surgeries in Africa has written an article expressing concern about the media's inaccurate depiction of this practice and suggesting a more fact‐based approach to reporting on it. I applaud the network for soliciting input from various fields. I cannot agree more that some in the media have misconstrued, exaggerated, and used inflammatory language; words like “torture,” “barbaric,” and “horrific” will likely enrage readers while reinforcing discrimination against women who practice or have undergone genital cutting. The authors also assert that “any genuine public policy debate should be grounded in the best available evidence and begins with fact checking.” Again, I couldn't agree more. My concern is that there is bias in the way some of the data are presented in this article.     

Justifying Clinical Deception: Some Amendments to Brummett and Salter

In Abram Brummett and Erica K. Salter's excellent paper, “Mapping the Moral Terrain of Clinical Deception,” they rightly note that it is sometimes ethically appropriate for health care professionals to deceive patients and families. However, they also note that because doing so violates a prima facie duty of honesty, the ethical burden of proof falls upon the deceiver. Hence, they also provide a sophisticated framework for determining whether any given case is warranted. I applaud their overall approach but also critique some of their claims, in particular, their conclusion that lies of commission require greater justification than those of omission and their conflation of the principles of beneficence and nonmaleficence. I also urge them to give greater attention to how power asymmetries should be accounted for and to the impact such deceptive choices might have on the clinician's character.     

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.     

Fragmented ethics and "bridge bioethics"

The Report's editorial mandate is both to examine issues of current importance and to invite bioethics to broaden the range of issues it probes. Thus along with articles exploring the relationship between patients and doctors, or health policy, or any of the myriad other familiar concerns of ethics in medicine, from time to time the Report has published articles about public health, animal experimentation, or “environmental ethics” broadly construed. The most recent was the special supplement Nature, Polis, Ethics in the November-December (1998) issue. Some, of course, have argued that “bio-ethics” ought always to encompass concern for issues beyond the bedside. When the biologist Van Rensselaer Potter proposed the term bioethics nearly thirty years ago, the field he had in mind lay at the intersection of ethics and the biological sciences in general. In light especially of Nature, Polis, Ethics's call for a substantive “humans-nature ethics” it seems appropriate, therefore, to invite one of the earliest proponents of a generous understanding of bioethics to reflect on the character of the field and the questions with which it should grapple. Below Potter and colleague Peter Whitehouse share their thoughts on this most interdisciplinary of disciplines. — B-JC, GK     

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 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.     

Storytelling

The November–December issue of the Hastings Center Report features a set of essays on the ethics of writing stories of patient care. The Report regularly features such stories, but some ways of telling them would be plainly unacceptable, and some in bioethics have suggested that the bar for acceptability is very high. Tod Chambers takes that position in this essay set. Drawing on the work of the literary theorist Mikhail Bakhtin, he proposes that case studies should be “polyphonic”—meaning that they contain “a diversity of voices that are unmediated and distinct.” In effect, he calls for a kind of coauthoring of stories about patients. In a second essay, Arthur Frank also calls for including the patient’s voice, but he builds on Bakhtin’s call for “dialogic” storytelling, in which the author seeks to represent the characters in the story as having their own voices and their own lives: “they can talk back.” A third essay, by Philip Rosoff, is concerned about the problem of harm and patient anonymity, which in the contemporary media environment has become harder to address.     

Reasonable disagreement about identified vs. statistical

People tend to contribute more—and think they have stronger obligations to contribute more—to rescuing an identified victim rather than a statistical one. Indeed, they are often disposed to contribute more to rescuing a single identified victim than a greater number of statistical ones. By an “identified victim,” I mean Terry Q., lying injured in the passenger seat of the wrecked automobile on the corner of Main Street and Broadway, or Jessica McClure, the child who fell into the Texas well in 1987 and whose family was sent $700,000 in donations for her. We need not know their names, however, and we can accept a very minimal form of identification. By a “statistical victim,” I mean the person who, extrapolating from traffic records, will be in a similar, serious car accident tomorrow (and may then be identified), or the children who will fall into wells next year if we do not cap them better than we did the well that trapped Jessica. Does this disposition (or perceived obligation) have any normative force? I initially thought there could be no such normative force, but consequentialist and nonconsequentialist arguments, pro and con, have convinced me that reasonable people can disagree with each other. This disagreement poses a problem for political philosophy: how should policy choices take such disagreement into account?