This essay looks closely at metaphors and other figures of speech that often feature in how Americans talk about dementia, becoming part of cultural narratives: shared stories that convey ideas and values, and also worries and fears. It uses approaches from literary studies to analyze how cultural narratives about dementia may surface in conversations with family members or health care professionals. This essay also draws on research on a notable social effect of legalizing medical aid in dying: patients may find (...) it easier to bring up a range of concerns, regardless of whether they have any interest in hastening their own death. The essay proposes that health care professionals rethink an idea prominent within their own culture: that conversations about the end of a person's life are inherently difficult. This framing may make it hard for people facing dementia to bring up their concerns about what lies ahead. We suggest a different way to think about these conversations, using the metaphor of “opening the door” to represent inviting a patient to bring up issues of deepest concern. (shrink)

Should you wash your hands? -- Are workarounds ethical? -- Turfing, bending, and gaming -- Dirty hands and the semiclear conscience -- Problems of humanity -- Ethics without heroics : foreseeing moral problems in complex systems.

This special report is published in commemoration of the fiftieth anniversary of the “Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death,” a landmark document that proposed a new way to define death, with implications that advanced the field of organ transplantation. This remarkable success notwithstanding, the concept has raised lasting questions about what it means to be dead. Is death defined in terms of the biological failure of the organism to (...) maintain integrated functioning? Can death be declared on the basis of severe neurological injury even when biological functions remain intact? Is death essentially a social construct that can be defined in different ways, based on human judgment? These issues, and more, are discussed and debated in this report by leading experts in the field, many of whom have been engaged with this topic for decades. (shrink)

Background The COVID-19 pandemic continues to disrupt every society as SARs-CoV-2 variants surge among the populations. Health care providers are exhausted, becoming ill themselves, and in some instances have died. Indeed, hospitals are struggling to find staff to care for critically ill patients most in need. Previous work has reported on the unending work-related conditions that hospital staff are laboring under and their subsequent mental and physical health strains. Health care providers need support, but it is not clear where that (...) support is to come from. While much research has reported on the COVID-19-related fears of nurses and physicians, fewer studies have focused on supportive features of the hospital work environment and how it may provide relief to front-line health care providers.Purpose This purpose of this study was to explore an often-overlooked resource within hospital systems across the United States—clinical ethicists—and examine their many roles during COVID-19 and the types of ethical issues they addressed with nurses, physicians, administrators, and others.Methods This was a primary analysis of semi-structured, qualitative interviews with 23 clinical ethicists across the United States. The interviews were conducted from November 2020–April 2021 and were audiotaped, transcribed verbatim, and de-identified; both inductive and deductive analyses were used to identify qualitative themes.Results Five major themes were identified: ethical issues that were increasingly more complex, moral distress that was “endemic,” shifting ethical paradigms from the focus on the individual to the population, fostering a supportive environment, and organizational ethics: variation in the value, roles, and policy input of clinical ethicists.Conclusions Our findings report on the integral and expanded role of clinical ethicists at an unprecedented time in our nation, and how they stepped forward to support front-line clinicians in hospitals across the country. (shrink)

Stresses on healthcare systems and moral distress among clinicians are urgent, intertwined bioethical problems in contemporary healthcare. Yet conceptualizations of moral distress in bioethical inquiry often overlook a range of routine threats to professional integrity in healthcare work. Using examples from our research on frontline physicians working during the COVID-19 pandemic, this article clarifies conceptual distinctions between moral distress, moral injury, and moral stress and illustrates how these concepts operate together in healthcare work. Drawing from the philosophy of healthcare, we (...) explain how moral stress results from the normal operations of overstressed systems; unlike moral distress and moral injury, it may not involve a sense of powerlessness concerning patient care. The analysis of moral stress directs attention beyond the individual, to stress-generating systemic factors. We conclude by reflecting on how and why this conceptual clarity matters for improving clinicians’ professional wellbeing, and offer preliminary pathways for intervention. (shrink)

Approximately 11.2 million undocumented immigrants have settled in the United States. Providing health care to these residents is an everyday concern for the clinicians and health care organizations who serve them. Uncertain how to proceed in the face of severe financial constraints, clinicians may improvise remedies–a strategy that allows our society to avoid confronting the clinical and organizational implications of public policy gaps. There is no simple solution‐no quick fix‐that will work across organizations (in particular, hospitals with emergency departments) in (...) states with different concentrations of undocumented immigrants, varying public and private resources for safety‐net health care, and differing approaches to law and policy concerning the rights of immigrants. However, every hospital can help its clinicians by addressing access to health care for undocumented immigrants as an ethical issue. We offer some recommendations for doing this in a structured, fair, and transparent way. We also describe the problems that may result when clinicians are forced to grapple with this issue on their own. (shrink)

Next SectionThis article proposes that knowledge of cultural expectations concerning ethical responses to unintentional harm can help students and physicians better to understand patients’ distress when physicians fail to disclose, apologise for, and make amends for harmful medical errors. While not universal, the Judeo-Christian traditions of confession, repentance, and forgiveness inform the cultural expectations of many individuals within secular western societies. Physicians’ professional obligations concerning truth telling reflect these expectations and are inclusive of the disclosure of medical error, while physicians (...) may express a need for self-forgiveness after making errors and should be aware that patients may also rely upon forgiveness as a means of dealing with harm. The article recommends that learning how to disclose errors, apologise to injured patients, ensure that these patients’ needs are met, and confront the emotional dimensions of one’s own mistakes should be part of medical education and reinforced by the conduct of senior physicians. (shrink)

The crisis of Covid‐19 has forced us to notice two things: our human interdependence and American society's tolerance for what Nancy Krieger has called “inequalities embodied in health inequities,” reflected in data on Covid‐19 mortality and geographies. Care is integral to our recovery from this catastrophe and to the development of sustainable public health policies and practices that promote societal resilience and reduce the vulnerabilities of our citizens. Drawing on the insights of Joan Tronto and Eva Feder Kittay, we argue (...) that the ethics of care offers a critical alternative to utilitarian and deontological approaches and provides a street‐ready framework for integration into public health deliberations to anchor public policy and investments concerning the recovery and future well‐being of America's citizens and society. (shrink)

Medical error is a leading problem of health care in the United States. Each year, more patients die as a result of medical mistakes than are killed by motor vehicle accidents, breast cancer, or AIDS. While most government and regulatory efforts are directed toward reducing and preventing errors, the actions that should follow the injury or death of a patient are still hotly debated. According to Nancy Berlinger, conversations on patient safety are missing several important components: religious voices, traditions, and (...) models. In After Harm, Berlinger draws on sources in theology, ethics, religion, and culture to create a practical and comprehensive approach to addressing the needs of patients, families, and clinicians affected by medical error. She emphasizes the importance of acknowledging fallibility, telling the truth, confronting feelings of guilt and shame, and providing just compensation. After Harm adds important human dimensions to an issue that has profound consequences for patients and health care providers. (shrink)

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. (shrink)

Too often in a hospital setting, forgiveness is thought to be automatic—given if a physician makes the apology. But this is cheap grace: a forgiveness achieved without the participation of the injured party. We must remember that forgiveness must be given, and devise new practices to see that it can be.

The ethical dimensions of an aging society are larger than the experience of chronic illness, the moral concerns of health care professionals, or the allocation of health care resources. What, then, is the role of bioethics in an aging society, beyond calling attention to these problems? Once we’ve agreed that aging is morally important and that population‐level aging across wealthy nations raises ethical concerns that cannot be fixed through transhumanism or other appeals to transcend aging and mortality through technology, what (...) is our field’s contribution? We argue that it is time for bioethics to turn toward social justice and problems of injustice and that part of doing so is articulating a concept of good citizenship in an aging society that goes beyond health care relationships. (shrink)

This article explores Dietrich Bonhoeffer’s writings on truth telling with reference to the problem of medical error in the US, the UK, and other developed nations, with particular attention to physicians’ resistance to disclosing their own mistakes to injured patients and their families. The brief essay ‘What Is Meant by “Telling the Truth”?’ and its historical context — Bonhoeffer’s imprisonment and interrogation in 1943 — is proposed as a text for medical ethicists and others seeking to overcome the barrier of (...) the ‘hidden curriculum’ within the culture of medicine, which encourages medical students and physicians to conceal their errors and to fear disclosure. (shrink)

This commentary responds to “Home Care in America: The Urgent Challenge of Putting Ethical Care into Practice,” by Coleman Solis and colleagues, in the May‐June 2023 issue of the Hastings Center Report. More specifically, we respond to the authors’ call for “inquiry into the nature, value, and practice” of home care. We argue that the most urgently needed normative reset for thinking about care work is the replacement of dominant individualistic thinking with systemic thinking. Deepening a focus on the social, (...) economic, and historical forces that shape the state of contemporary care work will help bioethicists to argue more effectively for improvements to working conditions. In turn, better working conditions will ease the oppositional stance between caregivers and receivers that has been set up by the current system, enabling all parties involved to better pursue the feminist ethical ideal of care. (shrink)

It is still remarkably difficult for public health officials charged with developing and implementing pandemic influenza preparedness plans at the community levelto obtain clear, concrete, and consistent guidance on how to construct plans that are both ethical and actionable. As of mid-2007, most of the federal and state pandemic plans filed with the Centers for Disease Control and Prevention, describing how public health officials will coordinate public agencies and private entities in the event of an outbreak, failed to include ethical (...) guidance for first responders responsible for providing essential services and making fair decisions during a public health emergency. (shrink)

"I begin to discern the profile of my death." This sentence from Marguerite Yourcenar's novel Memoirs of Hadrian has stuck with me over the decades. In checking the quote, I learned that this sentence from an early draft caught the novelist's attention, and encouraged her to write the book from perspective of the dying Roman emperor. Something of this magic – finding, in one's earlier thoughts, a key that unlocks a story – is at work in F.M. Kamm's Almost Over, (...) a book constructed as a series of rigorous conversations with her own work, that of fellow American philosophers over the past 50 years, and with public policy, aimed at bringing the profile of death into view, considering how mortality shapes the... (shrink)

Abstract“Choices” about nonmedical aging‐related matters, such as housing, are weirdly extreme in the long last stage of life in America. In my experiences accompanying my parents to consultations with physicians, elder‐care lawyers, and social service providers, a middle‐class older adult's presumed choices are the high‐end assisted living facility—or the Medicaid spend‐down. Nothing in between. Experts in aging and housing are calling attention to this “forgotten middle”—the millions of older Americans like my mother, people who are neither rich nor poor and (...) whose needs in this long last stage of life cannot reliably be met through publicly funded health insurance or personal savings. (shrink)

In “Avoiding a ‘Death Panel Redux,” Nicole M. Piemonte describes how she tried to fire palliative care after first refusing to let it—and any mention of death, from any source—into her dying mother's room. One way to read this is as a familiar human story about the profound difficulty of facing death, a story that, too often, is reduced to the word “denial.” But Piemonte and Hermer suggest that there is another way to read this story, in terms of the (...) structure that was absent from the earliest conversations and relationship‐building among this patient, her daughter, and the doctors. If advance care planning had been part of the structure all along, if everyone—oncologists, patients, loved ones—talked about prognosis, preferences, benefits, burdens, and goals from the time a life‐threatening disease was diagnosed, as a normal part of good care, would Piemonte have understood her own role as caregiver and advocate differently? If, early on, her fifty‐year‐old mother had been asked, “what do you want to do with the rest of your life?” and had been assured that this question mattered and encouraged to talk about her hopes (such as attending her daughter's wedding), might her treatment and care have been organized in a different way? (shrink)

Should the doing of bioethics require the reading of novels? No, unless we believe that fiction trumps nonfiction as a means of exploring complex issues in medicine and the life sciences, and also that writers of novels have a lock on the arts-and-humanities department of the moral imagination. And it’s hard to get science right—convincing, not distracting—in a literary novel, even as plot-driven genre fiction may rely on biotechnological twists. So, let’s narrow our scope to the care of the sick, (...) and to medical ethics. Should the development of our personal capacity for empathy with those who suffer—with those who are sick, dying, frightened, threatened, weary, or in need of care and compassion for .. (shrink)

Two years ago, I was on a boat in the middle of the river that runs through Brisbane, Australia, with Sarah Winch, a medical ethicist at the University of Queensland. We were talking about the intersection of our professional work and our personal experiences of caregiving. Sarah's husband, Lincoln, had died at the age of forty‐eight, four months after a late‐stage diagnosis of kidney cancer. My friend Julia was the same age when she died, on November 18, 2010, after living (...) with breast cancer for seven years. Sarah asked me, “What was it like to write guidelines on end‐of‐life care while your best friend was dying?”. (shrink)

Out of the shadows. One of the interesting things about starting a new research project is its uncertainty. You’re not yet sure what you think about the issues you’re about to explore. I was reminded of this recently when, with colleagues here at the Center, I started work on a project on undocumented patients in the U.S. health care system—or rather, in the different systems that make up this fragmented system. There are more than eleven million undocumented residents of the (...) United States. Most are low-income workers, or family members of these workers. Most are also uninsured, with no prospect of obtaining health insurance. Like anyone else who has a body, sometimes an undocumented resident gets sick. What .. (shrink)

Out of the shadows. One of the interesting things about starting a new research project is its uncertainty. You’re not yet sure what you think about the issues you’re about to explore. I was reminded of this recently when, with colleagues here at the Center, I started work on a project on undocumented patients in the U.S. health care system—or rather, in the different systems that make up this fragmented system. There are more than eleven million undocumented residents of the (...) United States. Most are low-income workers, or family members of these workers. Most are also uninsured, with no prospect of obtaining health insurance. Like anyone else who has a body, sometimes an undocumented resident gets sick. What .. (shrink)

The field of spirituality and medicine has seen explosive growth in recent years, due in part to significant private support for the development of curricula in more than half of all U.S. medical schools, and for related residency training programs and research centers. While there is no single definition of " spirituality " in use across these initiatives, this article examines the definitions and learning objectives relevant to spirituality that are addressed in a 1999 report of the Medical School Objectives (...) Project, with special attention to their ethical implications. It concludes with several "diagnostic" case studies of religious consciousness from the medical literature and in literary texts, again with attention to ethical concerns. (shrink)

For too long, bioethics has followed law in reducing “conscience” to “conscientious objection,” in other words, to laws and policies permitting and protecting refusal. In “Reframing Conscientious Care: Providing Abortion Care When Law and Conscience Collide,” Mara Buchbinder and colleagues draw our attention to one dimension of the problem of reducing conscience to refusal to provide certain forms of medical care: what about the conscience problems experienced by the professionals who are attempting to provide safe, effective health care that includes (...) services that others associate with conscientious objection? In seeking to disrupt a specific medical practice—one that is legal, desired by the patient, and conducted in accordance with medical standards—North Carolina House Bill 854, The Woman's Right to Know Act, and laws like it, appear to be designed to produce moral distress in physicians and other professionals involved in the provision of abortions. For abortion providers in North Carolina and other states, conscientious objection to the mandates of laws like HB 854 isn't a realistic option. So what can bioethics offer to professionals bound by such laws? We can start by reclaiming the idea of “conscience” as something that can say “yes” to providing health care. (shrink)

The perception that one is being forced to do wrong, or being prevented from doing the right thing, is often described in the most brutal terms, as a situation that feels like participating in the torture of another human being. The emotional force of the experience of moral distress, and the perception that one is powerless to do anything to change the situation producing moral distress, can make it hard to look at these experiences critically, and to imagine a different (...) reality. Writing about the experience of moral distress is a way to look critically at this experience. This commentary discusses how these narratives explore moral distress in relation to the formation of professional identity, as a “dirty” experience, as a potential consequence of unrelieved moral uncertainty, in the care of “difficult” patients, and as a response to systemic problems. (shrink)

Architecture, like ethics, concerns actual rather than ideal choices. William James's remarks on ethics, at a meeting of the Yale Philosophical Club in 1890, could apply equally well to the built environment:The actual possible in this world is vastly narrower than all that is demanded; and there is always a pinch between the ideal and the actual which can only be got through by leaving part of the ideal behind. There is hardly a good which we can imagine except as (...) competing for the possession of the same bit of space and time with some other imagined good.1Health care facilities are spaces in which certain imagined goods—the care of the sick, the treatment or prevention of disease—meet the actual possible of .. (shrink)

ABSTRACT:COVID-19 revealed health-care systems in crisis. Intersecting crises of stress, overwork, and poor working conditions have led to workforce strain, under-staffing, and high rates of job turnover. Bioethics researchers have responded to these conditions by investigating the ethical challenges of pandemic response for individuals, institutions, and health systems. This essay draws on pandemic findings to explore how empirical bioethics can inform post-pandemic translational bioethics. Borrowing from the concept of translational science in medicine, this essay proposes that translational bioethics should communicate (...) knowledge about ethical challenges in health-care work to support health systems change. The authors draw from their experience with the Study to Examine Physicians' Pandemic Stress (STEPPS), an interdisciplinary research project that investigates physicians' experiences at the front lines of the COVID-19 pandemic. Using STEPPS as an example of empirical bioethics with potential for translation, the authors review their research and discuss the ongoing process for translating their findings, focusing on how bioethics research and practice can contribute to supporting the health-care workforce. (shrink)

As a population, people who self‐identify as lesbian, gay, bisexual, or transgender face significant risks to health and difficulty in obtaining medical and behavioral health care, relative to the general public. These issues are especially challenging in safety‐net health care institutions, which serve a range of vulnerable populations with limited access, limited options, and significant health disparities. Safety‐net hospitals, particularly public hospitals with fewer resources than academic medical centers and other nonprofit hospitals that also serve as safety nets, are under (...) immense financial pressures. However, with the introduction in 2011 of standards for LGBT inclusion by The Joint Commission, showing progress on LGBT health care has become a compliance issue for hospitals. And because the health care community itself has contributed to LGBT health disparities through prejudice, disrespect, or inadequate knowledge that have made it difficult for LGB and especially T people to seek care or to obtain the care they need, there is a moral case for allocating scarce resources to this population: we owe them some investment in righting wrongs that the health care system itself has produced.So, where to begin in the typical safety‐net hospital or clinic? Beyond staff training, which is essential and for which good models now exist, what does justice demand from a service‐utilization perspective? Given the range of health care services that an LGBT person in the safety net may need or want, how should we set priorities? And what can't we promise to do for this member of our community? (shrink)