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)

Bioethical concerns about the potential for abuse in medical aid in dying (MAID) have focused primarily on the risk of coercion (Battin et al. 2007; Foley and Hendin 2002). Accordingly, the require...

“It's almost like putting salt in a wound, for this person who's already made a very difficult decision,” suggested Meghan Patterson, a licensed obstetrician-gynecologist whom we interviewed in our qualitative study of the experiences of North Carolina abortion providers practicing under the state's Woman's Right to Know Act. The act requires that women receive counseling with state-mandated information at least twenty-four hours prior to obtaining an abortion. After the law was passed, Patterson worked with clinic administrators, in consultation with a (...) lawyer, to write a script to be used in the state-mandated counseling procedure. She and her colleagues took particular steps to mitigate the effects of what she described as HB 854's “forced language”—such as referring to the “father of the child.” While HB 854 stipulated that patients must be informed of the medical risks associated with the particular abortion procedure as well as those of carrying the child to term, Patterson's script made explicit the magnitude of comparative risks, emphasizing that the risks of carrying a pregnancy to term are substantially greater than the risks of an early-term abortion. She felt that these contextualization strategies helped to facilitate trust and rapport in a clinical care situation that proved relationally and morally challenging. In this article, we take up and expand on this point by elucidating an empirically grounded approach to ethically justified care when health care providers face legal or institutional policy mandates that raise possible moral conflicts. Our approach builds on recent bioethics discourse addressing conscience in the practice of medicine. While the concept of conscience has broad philosophical underpinnings relating to moral judgment, agency, and discernments of right and wrong, debates in bioethics have tended to engage the concept primarily vis-à-vis rights of conscientious objection or refusal. Here, we suggest a broader frame for thinking about claims of conscience in health care. Our approach draws on the feminist bioethics and the ethics of care literatures to highlight how providers may be motivated by matters of conscience, including relational concerns, in the active provision of certain forms of care. What emerges are two possibilities: not only conscientious refusal to comply with a policy mandate but also conscientious compliance—working conscientiously within a mandate's confines. (shrink)

Background Bioethical debates about privacy, big data, and public health surveillance have not sufficiently engaged the perspectives of those being surveilled. The data justice framework suggests that big data applications have the potential to create disproportionate harm for socially marginalized groups. Using examples from our research on HIV surveillance for individuals incarcerated in jails, we analyze ethical issues in deploying big data in public health surveillance. -/- Methods We conducted qualitative, semi-structured interviews with 24 people living with HIV who had (...) been previously incarcerated in county jails about their perspectives on and experiences with HIV surveillance, as part of a larger study to characterize ethical considerations in leveraging big data techniques to enhance continuity of care for incarcerated people living with HIV. -/- Results Most participants expressed support for the state health department tracking HIV testing results and viral load data. Several viewed HIV surveillance as a violation of privacy, and several had actively avoided contact from state public health outreach workers. Participants were most likely to express reservations about surveillance when they viewed the state’s motives as self-interested. Perspectives highlight the mistrust that structurally vulnerable people may have in the state’s capacity to act as an agent of welfare. Findings suggest that adopting a nuanced, context-sensitive view on surveillance is essential. -/- Conclusions Establishing trustworthiness through interpersonal interactions with public health personnel is important to reversing historical legacies of harm to racial minorities and structurally vulnerable groups. Empowering stakeholders to participate in the design and implementation of data infrastructure and governance is critical for advancing a data justice agenda, and can offset privacy concerns. The next steps in advancing the data justice framework in public health surveillance will be to innovate ways to represent the voices of structurally vulnerable groups in the design and governance of big data initiatives. (shrink)

On 19 July 2016, three medical organisations filed a federal lawsuit against representatives from several Vermont agencies over the Patient Choice and Control at End of Life Act. The law is similar to aid-in-dying laws in four other US states, but the lawsuit hinges on a distinctive aspect of Vermont's law pertaining to patients' rights to information. The lawsuit raises questions about whether, and under what circumstances, there is an ethical obligation to inform terminally ill patients about AID as an (...) end-of-life option. Much of the literature on clinical communication about AID addresses how physicians should respond to patient requests for assisted dying, but neglects the question of how physicians should approach patients who may not know enough about AID to request it. In this article, I examine the possibility of an affirmative duty to inform terminally ill patients about AID in light of ethical concerns about professional responsibilities to patients and the maintenance of the patient–provider relationship. I suggest that we should not take for granted that communication about AID ought to be patient-initiated, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves. By identifying ethical considerations that ought to inform such discussions, I aim to set an agenda for future bioethical research that adopts a broader perspective on clinical communication about AID. (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)

Web scraping involves using computer programs for automated extraction and organization of data from the Web for the purpose of further data analysis and use. It is frequently used by commercial companies, but also has become a valuable tool in epidemiological research and public health planning. In this paper, we explore ethical issues in a project that “scrapes” public websites of U.S. county jails as part of an effort to develop a comprehensive database to enhance HIV surveillance and improve continuity (...) of care for incarcerated populations. We argue that the well-known framework of Emanuel et al. provides only partial ethical guidance for the activities we describe, which lie at a complex intersection of public health research and public health practice. We suggest some ethical considerations from the ethics of public health practice to help fill gaps in this relatively unexplored area. (shrink)

The need for informed analyses of health policy is now greater than ever. The twelve essays in this volume show that public debates routinely bypass complex ethical, sociocultural, historical, and political questions about how we should address ideals of justice and equality in health care. Integrating perspectives from the humanities, social sciences, medicine, and public health, this volume illuminates the relationships between justice and health inequalities to enrich debates. Understanding Health Inequalities and Justice explores three questions: How do scholars approach (...) relations between health inequalities and ideals of justice? When do justice considerations inform solutions to health inequalities, and how do specific health inequalities affect perceptions of injustice? And how can diverse scholarly approaches contribute to better health policy? From addressing patient agency in an inequitable health care environment to examining how scholars of social justice and health care amass evidence, this volume promotes a richer understanding of health and justice and how to achieve both. -/- The contributors are Judith C. Barker, Paula Braveman, Paul Brodwin, Jami Suki Chang, Debra DeBruin, Leslie A. Dubbin, Sarah Horton, Carla C. Keirns, J. Paul Kelleher, Nicholas B. King, Eva Feder Kittay, Joan Liaschenko, Anne Drapkin Lyerly, Mary Faith Marshall, Carolyn Moxley Rouse, Jennifer Prah Ruger, and Janet K. Shim. (shrink)

As of 2019, ten jurisdictions in the United States—Oregon, Washington, Montana, Vermont, California, Colorado, the District of Columbia, Hawaii, New Jersey, and Maine—have authorized physicians to...

Background: Laws governing abortion provision are proliferating throughout the United States, yet little is known about how these laws affect providers. We investigated the experiences of abortion...

This essay considers how we are to understand the decision to end one’s life under medical aid-in-dying (MAID) statutes and the role of influencing others. Bioethical concerns about the potential for abuse in MAID have focused predominantly on the risk of coercion and other forms of undue influence. Most bioethical analyses of relational influences in MAID have been made by opponents of MAID, who argue that MAID is unethical, in part, because it cannot cleanly accommodate relational influences. In contrast, proponents (...) of MAID have downplayed the role of relational influences because they may threaten the pillars of autonomy and voluntariness on which the ethics of MAID rest. Drawing on a case study collected as part of an ethnographic study of MAID in Vermont, we show how relations of care are central to MAID decision-making. Such relations may muddle motives for assisted death, exposing the limits of conventional bioethics thinking on MAID and relational influence. Here, we argue that ethical frameworks for MAID should account for the role of relational influences in decision-making, and acknowledge that relational influences may support, as well as undermine, a decision for MAID. We then outline an evaluative framework for determining whether relational influences are undue that identifies six key domains for consideration: mental competence, authenticity, relationship context, having an adequate range options, financial considerations and irremediability. We conclude by suggesting that social relationships may constitute an important source of value in end-of-life decision-making and not only a liability. (shrink)

The ethical allocation of scarce medical resources has received significant attention, yet a key question remains unaddressed: how should scarce, divisible resources be allocated? We present a case from the COVID-19 pandemic in which scarce resources were divided among patients rather than allocated to some patients over others. We assess how widely accepted allocation principles could be applied to this case, and we show how these principles provide insufficient guidance. We then propose alternatives that may help guide decision-making in such (...) cases, and we evaluate the possibility of treating patients equally by dividing resources equally. Resource scarcity is not limited to pandemic situations, and many healthcare resources are divisible. This question—how to allocate these divisible resources—deserves greater attention from bioethics. (shrink)

The scarlet “A” that the protagonist of Nathaniel Hawthorne's seventeenth‐century novel is forced to pin to her dress symbolizes the shame and social disgrace that she endures for conceiving a child out of adultery. In Scarlet A: The Ethics, Law, & Politics of Ordinary Abortion, Katie Watson argues that abortion is our era's scarlet letter: a mark of stigma that is invisible yet no less shameful, causing unnecessary cultural silences around what is a remarkably common practice. In this brilliant new (...) book, Watson draws on legal proceedings, bioethics literature, and personal experience; offers cultural and literary analysis; and uses her unique vantage point as a lawyer, bioethicist, and medical educator to develop a thought‐provoking and thoroughly fresh perspective on one of the most divisive moral issues of our time. (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)

Building on foundational work in activity theory and cultural psychology, this article examines children's play to discern how biomedical practices and understandings of illness are negotiated, modeled, and reproduced among children dealing with a parent's cancer. Using discourse analytic methods, I analyze a videotaped playroom interaction involving three preschool-age girls, all of whom have a parent with cancer, and myself. The article employs notions of `frame' and `footing' to illustrate fantasy and reality as overlapping and embedded frames of experience that (...) organize children's playroom activities in distinctive ways. The shifting alignments and participation structures within the playroom environment illuminate the strategic ways in which children laminate personal experience onto the play frame. Through attention to children's talk and embodied action, I show how children key different interactional frames to expand the realm of epistemological and cognitive resources available to them as they seek cultural understanding. (shrink)