“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)

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)

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)

Obituaries of people who died from an opioid overdose represent a new territory for understanding cultural narratives of the US opioid epidemic. Drawing on textual analysis of 30 opioid overdose obituaries published on Legacy.com between 2015 and 2020, we describe a prototypical narrative conveyed through opioid overdose obituaries, which renders symbolic meaning through the voices of the bereaved. Obituary authors reimagine their subjects as tragic heroes and reconstitute opioid addiction as a curse, plight or affliction that befalls its victims. Many (...) of these obituaries invoke the language of public health, calling for reform, action or general awareness so other families might avoid the havoc and heartbreak of opioid addiction. We argue that obituaries contribute to broader cultural narratives of opioid addiction by reproducing tragic storylines, vindicating and humanising the deceased, framing opioid addiction as a societal, rather than individual, problem, and medicalising addiction as a brain disease beyond a person’s control. Obituary texts thus intertwine a personal story with a broader societal health crisis, transforming stories of the deceased into cautionary tales and public health warnings. (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)

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)