Being a patient and living a life -- Clinical space and traits of healing -- False starts and frequent failures -- Three journeys : A.'Ibuprofen and love', B. 'Staying tuned up', C. 'We all want the same things' -- Being a patient : the moral field -- Rethinking healthcare ethics : the patient's moral authority.

The Covid‐19 pandemic has concentrated bioethics attention on the “lifeboat ethics” of rationing and fair allocation of scarce medical resources, such as testing, intensive care unit beds, and ventilators. This focus drives ethics resources away from persistent and systemic problems—in particular, the structural injustices that give rise to health disparities affecting disadvantaged communities of color. Bioethics, long allied with academic medicine and highly attentive to individual decision‐making, has largely neglected its responsibility to address these difficult “upstream” issues. It is time (...) to broaden our teaching, research, and practice to match the breadth of the field in order to help address these significant societal inequities and unmet health needs. (shrink)

"This book maps the moral terrain in the grounded reality of human experience without relying on theories or systems of ethics as the primary orienting strategy. Moral awareness needs first to be appreciated for what it is before it is made to conform to theories or systems. And moral consciousness is not a steady or stable set of perceptions; as we change so do the moral challenges that most concern us"--.

Much has been written about the importance of narrative in teaching ethics and humanities to medical students and residents, as well as the value of narratives in clinical care. Relatively little has been said about the essential role of narrative in bioethics consultations. For most consults, the interpretation of narratives is the central moral feature, and the ethics consultant is inevitably one of the narrators. In a recent consult in which I participated, at least three narratives were in play. The (...) medical record itself was a narrative, or really, a variety of narratives. A second distinct narrative was the story of why this case had come to be categorized as an ethical concern for the medical team. A third narrative was the tentative sketch running through my mind as a consultant‐partly factual, partly anticipatory and conjectural, inevitably personal‐about what was going on here. (shrink)

The three important target articles make a strong case for regarding racism as a public health crisis. Each calls for advocacy by the bi...

In March 1996, the General Accounting Office (GAO) issued the reportScientific Research: Continued Vigilance Critical to Protecting Human Subjects.It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment is not always cleartoclinicians. Controversy (...) exists regarding whether certain medical procedures should be categorized as research.”This problem currently plagues gene transfer research. A few months prior to the GAO report, an ad hoc committee appointed by National Institutes of Health (NIH) Director Harold Varmus expressed similar concerns in its assessment of NIH investment in research on gene therapy. (shrink)

In March 1996, the General Accounting Office (GAO) issued the reportScientific Research: Continued Vigilance Critical to Protecting Human Subjects.It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment is not always cleartoclinicians. Controversy (...) exists regarding whether certain medical procedures should be categorized as research.”This problem currently plagues gene transfer research. A few months prior to the GAO report, an ad hoc committee appointed by National Institutes of Health (NIH) Director Harold Varmus expressed similar concerns in its assessment of NIH investment in research on gene therapy. (shrink)

In a recent article in The Journal of Clinical Ethics, David Wendler argues that worries about the therapeutic misconception (TM) are not only misconceived, but detract from the larger agenda of a proper informed consent for subjects involved in clinical research. By contrast, we argue that Wendler mischaracterizes those who support TM research, and that his arguments are fragmentary, often illogical, and neglect a critical difference between clinical care and clinical research. A clear explanation about the chief aim of research (...) is, in fact, what gives the other elements in a consent process their meaning. We argue that informed consent must be both trial-specific and context-sensitive, and that concern about the TM is needed now more than ever. (shrink)

In March 1996, the General Accounting Office issued the report Scientific Research: Continued Vigilance Critical to Protecting Human Subjects. It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment is not always clear (...) to clinicians. Controversy exists regarding whether certain medical procedures should be categorized as research.”This problem currently plagues gene transfer research. A few months prior to the GAO report, an ad hoc committee appointed by National Institutes of Health Director Harold Varmus expressed similar concerns in its assessment of NIH investment in research on gene therapy. (shrink)

Money plays a powerful role in modern medicine, both in terms of how health services are organized and delivered and increasingly in how physicians understand themselves and their work. The phrase “the hegemony of money” is intended to capture that power.

The American Journal of Bioethics, Volume 11, Issue 7, Page 15-16, July 2011.

When health care providers make decisions to use resources, their devotion to the patient at hand must be mediated by a framework that puts individual autonomy and social equity into focus simultaneously. The concept of citizenship yields such a framework.

Lauris Kaldjian makes a strong case for respecting the role of conscience in the practice of medicine. His excellent book, Practicing Medicine and Ethics, presents an historically informed and carefully crafted explication of the role of conscience in Western ethics and its relevance for medical practitioners. The essay that initiates the discussion in this issue of Perspectives in Biology and Medicine is an equally well-written and lucid account of this important component of morality. But it is also worrisome in its (...) implications for insulating conscience from the other facets of moral thinking and feeling. The reasons Kaldjian's account is not finally compelling stem from his tethering conscience too... (shrink)

Volume 19, Issue 11, November 2019, Page 63-64.

Our culture is well on its way to reducing medical ethics to legal requirements, general citizen ethics, or personal values. A distinctive ethic for medicine provides critical distance and moral meaning for the profession and an enriched societal ethic.

Edmund Pellegrino claims that medical ethics must be derived from a perception of the patient's damaged humanity, rather than from the self-imposed duties of professionals. This essay explores the meaning and examines the challenges to this patient-centered ethic. Social scientific and bioethical interpretations of medicine constitute one kind of challenge. A more pervasive challenge is the ascendancy of managed care, and especially investor-owned, for-profit managed care. A list of questions addressed to patients, physicians and organizations is offered as one means (...) of assessing this threat and moving toward morally trustworthy relationships. (shrink)

The age-rationing debate of fifteen years ago will inevitably reemerge as health care costs escalate. All age-rationing proposals should be judged in light of the current system of rationing health care by price in the U.S., and the resulting pattern of excess and deprivation. Age-rationing should be rejected as public policy, but recognized as a personal virtue of stewardship among the elderly.

The ethicist's role in the clinical context is not presently well defined. Ethicists can be thought of as moralists, technicians, Sophists, or as teachers and learners. Each of these roles is examined in turn. An argument is made for the ethicist as a teacher who must also learn a great deal about the clinical setting in order to encourage an effective critical examination of basic values. Four specific tasks of this teaching role are discussed: describing moral experience, eliciting assumptions, considering (...) multiple alternatives and justifying choices. (shrink)

ABSTRACT:Aging and death need to be seen as a single reality, aging-and-death. Separating them largely voids the lessons to be learned from aging, and the benefits of seeing life as a whole and learning a new sense of beauty, meaning, hope, and love. All the distinctive experiences central to our sense of ourselves as human beings are tied to recognition of our mortality. Living a full life means accepting and embracing death as not only inevitable, but necessary and desirable.

AIDS and the responses and attitudes it evokes surpass the analytic abilities of standard bioethics. These responses and attitudes are explored in terms of literary and anthropological categories, such as dirt, disorder, pollution and ritual cleanliness. Implications for medical education are suggested.

The multiple emergencies of global heating require bioethicists to embrace the dormant, comprehensive bioethics legacy of Van Rensselaer Potter, moving beyond the current narrower focus of the field on medicine and health care. We recommend readings that expand the core literature of bioethics to address key environmental issues. These are Jessica Pierce and Andrew Jameton's The Ethics of Environmentally Responsible Health Care; Dale Jamieson's Reason in a Dark Time; and David Wallace‐Well's The Uninhabitable Earth. Because efforts to mitigate climate disasters (...) are likely to be only partially successful, we also recommend the teachings of late Roman Stoicism and core texts of Buddhism, which provide ethical wisdom likely to be needed in the multiple crises of the Anthropocene. (shrink)

Drew Leder's Clinical Interpretation: The Hermeneutics of Medicine [1] is an essay which understates its case and thereby opens itself to misinterpretation. This response to Leder argues for a more thorough-going hermeneutic for both medicine and science. At the conceptual as well as the practical level, modern medicine and its scientific foundations are hermeneutic enterprises. The purpose of this essay is to argue that we should not back away from this more radical thesis. Embracing it will result in less alienation (...) of physicians from patients, and of physicians from the tasks of medicine. (shrink)

This essay argues that Hume's theory of justice can be useful in framing a more persuasive case for universal access in health care. Theories of justice derived from a Rawlsian social contract tradition tend to make the conditions for deliberation on justice remote from the lives of most persons, while religiously-inspired views require superhuman levels of benevolence. By contrast, Hume's theory derives justice from the prudent reflections of socially-encumbered selves. This provides a more accessible moral theory and a more realistic (...) path to the establishment of universal access. (shrink)

Images of the future are usually only caricatures of the present. Perhaps this picture of the future of medical care will also prove to be a caricature. Whether it does depends on choices that Americans have still to make. —Paul Starr The Social Transformation of American Medicine.

We will argue here that after more than 30 years of talk, theory, and clinical practice, we bioethicists still know far too little about what patients, subjects, and healthcare professionals are up to, morally. Bioethics is still near the beginning in grasping what it means to understand, much less to honor fully, the moral power and perspicacity of those bioethics is designed to serve. This is, of course, a serious charge, but one we will endeavor to show has merit. However, (...) we want to be clear from the start that we do not gainsay the important work that has been done in and through the influence of bioethics, both as a field of practical engagement and as a cultural movement, in improving how healthcare is delivered and how human subjects are treated. Thirty or 40 years—depending on how one marks the beginning point—is a very short time, and it is hard to imagine that wholesale changes, all of them in the right direction, could be the outcome for a field this young. Hence, we do not intend the title, “One Cheer for Bioethics,” as a wholesale indictment, but as an indication that there is a great deal of work yet to be done, and that following the currently dominant direction of the field is not likely to get us there. Our aim is to indicate just where future work should be focused, and to do so we will need to be critical of some of the preoccupations of the last three decades. a. (shrink)

Book reviewed in this article: Duties to Others. Edited by Courtney S. Campbell and B. Andrew Lustig.

Two decades ago, I wrote an essay expressing my skepticism about the nascent movement to certify bioethics consultants. My concerns were numerous. For example, I worried that the move toward certification would give too much weight to moral theory and neglect the importance of the less formal moral reasoning of patients and their families. I was also concerned that the effort to certify competence, complete with standardized testing, would be largely self-promotional and make unfounded claims about who has the capacity (...) to do this work. My worries were prescient. Notice, for example, the way that the American Society for Bioethics and Humanities was advertising its new Healthcare Ethics... (shrink)

Schneiderman, Jecker, and Jonsen have written an eloquent essay that both defends the concept of medical futility and describes their own candidate for a practical, working definition. Whether they have provided the best such definition I cannot say, but they are surely right to claim that some such concept is needed—for doctors to practice, for patients to receive good care, for family and friends of the patient to understand and prepare for what is happening, and for society to trust what (...) doctors say and do in delivering care. In brief, futility—or something like it—is a concept with important personal and social value, and more than simple prognostic meaning. One of the... (shrink)

ABSTRACT:Good science fiction can be a successful vehicle for portraying justice. Science fiction can stimulate moral imagination in much the same way as the most effective justice theories, connecting the world in which we live with a range of alternative futures deliberately and creatively made plausible. A selective examination of classic and recent science fiction stories and novels provides contextual framing for considering questions of climate justice, virtuous personal action in the face of structural injustice, and the problem of what (...) justice means when some people are regarded as “other.” By connecting compelling images of individual responsibility with the complex challenges posed by striving for social justice, science fiction can also help render justice work appealing and achievable—an essential step that is reinforced in closing by a brief set of maxims. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Editors' Introduction to the Special Issue on the Translational Work of BioethicsElizabeth Lanphier and Larry R. ChurchillRecent essays in Perspectives and Biology and Medicine, including "Can Clinical Ethics Survive Climate Change" by Andrew Jameton and Jessica Pierce and "Ethical Maxims for a Marginally Inhabitable Planet" by David Schenck and Larry R. Churchill, both appearing in the Autumn 2021 issue, inspired conversations between us, among our colleagues, and with various (...) contributors to this symposium. We asked of ourselves and each other: where can, should, or must bioethics as a field go to make what bioethicists know and publish about in the academic literature relevant to public policy decisions, health and technological innovation, and a general public? In other words, where do we, practically speaking, go with our bioethical insights and discoveries to make a tangible impact on issues like climate change—though that is only one of the various topics that the authors in this symposium tackle.This translational work of connecting scholarly innovation back to overt practical innovation is often peripheral to academic bioethics. It is not the work the academy typically recognizes in its credit system. Yet this translational work is becoming a critical, central duty of bioethics for the 21st century, while the kinds of work the academy most valorizes may be the least important at this time. In particular, the need for translational initiatives is increasingly evident as pandemics linger into a new normal, the long history and ongoing impacts of racism become even more evident at institutional levels, and the devastating health implications of global warming emerge. [End Page 515]Bioethicists function in privileged proximity to the deleterious effects of failed health and social policy, as well the interplay between seemingly personal health choices, such as those related to diet or lifestyle, and inequitable conditions that impact the options available to individuals and groups. We are increasingly distressed by what we see from this privileged window into health. The COVID-19 pandemic has made preexisting social and policy inequities impacting health impossible to ignore. At the same time, the patterns of carbon pollution portend health crises of unprecedent severity and magnitude in the near future—and will likely deepen inequities and disparities already occurring between those most contributing to, and those most harmed by, climate change.As a field, bioethics has, since its start, been at the intersection of theory and practice. But it is not sufficient for the field to reside passively at this crossroads. The field must be constantly innovating new byways and highways, new offshoots from existing pathways and connector roads between them, that build out both the theory and practice of bioethics in a mutually innovative relationship to each other. Bioethics does not make sense without attention to the real-world practices and the lived realities of health and care. The practical engagement is what deepens and enriches theory, in ways that are more responsive to the real world in which bioethicists toil. But it also is not enough to merely contribute to the body of bioethics scholarship. The translational bioethics we envision is also about using novel theories and concepts to actively shape practices and realities; it is a bioethics in which theory and practices mutually influence each other, each reaching out to generate and change the other.This collection of essays, drawn from a diverse number of scholars, offers several promising paths forward. The essays were written in the spring of 2022, two years into the COVID-19 pandemic, two years after the murder of George Floyd and international attention to the movement for Black lives, and for the most part in the weeks just prior to a set of US Supreme Court decisions with enormous impacts on health, including the June 24 Dobbs v. Jackson Women's Health Organization and the June 30 West Virginia v. EPA decisions.The authors are diverse in age, spheres of work, discipline, sex, race, and ethnicity. They expand our vision for what bioethics can and should be. While we have grouped the essays by subject matter, most of the pieces speak to the field as a whole and invite cross-fertilization. We hope readers will find new ideas, old ideas... (shrink)

We will argue here that after more than 30 years of talk, theory, and clinical practice, we bioethicists still know far too little about what patients, subjects, and healthcare professionals are up to, morally. Bioethics is still near the beginning in grasping what it means to understand, much less to honor fully, the moral power and perspicacity of those bioethics is designed to serve. This is, of course, a serious charge, but one we will endeavor to show has merit. However, (...) we want to be clear from the start that we do not gainsay the important work that has been done in and through the influence of bioethics, both as a field of practical engagement and as a cultural movement, in improving how healthcare is delivered and how human subjects are treated. Thirty or 40 years—depending on how one marks the beginning point—is a very short time, and it is hard to imagine that wholesale changes, all of them in the right direction, could be the outcome for a field this young. Hence, we do not intend the title, “One Cheer for Bioethics,” as a wholesale indictment, but as an indication that there is a great deal of work yet to be done, and that following the currently dominant direction of the field is not likely to get us there. Our aim is to indicate just where future work should be focused, and to do so we will need to be critical of some of the preoccupations of the last three decades. a. (shrink)