Beyond coercion: reframing the influencing other in medically assisted death.

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.

Physicians' Explanatory Models of Pediatric Inflammatory Bowel Disease: A Qualitative Interview Study.

Explanatory models are culturally informed representations of illness that convey understandings of the etiology and expected course of disease. Substantial research has explored lay explanatory models, but examining physicians' clinical explanatory models can also provide insight into patients' understandings of illness because physicians are a foundational source of authoritative knowledge that shapes lay concepts of illness and disease. This study characterized the explanatory models used by pediatric gastroenterologists when explaining inflammatory bowel disease (IBD) to children. We conducted semi-structured qualitative interviews with 20 pediatric gastroenterologists across the United States about their clinical communication and explanatory models. We identified two primary explanatory models used to describe immune dysregulation in pediatric IBD: the defense and protection model, which characterizes the immune system as an army that erroneously sees the body as "non-self" and attacks it; and the switch model, which conceptualizes treatment as activating a switch that turns off a faulty immune response. We also identified two models used by some physicians to describe inflammation: the scratch and scrape model, which compares IBD inflammation to scratches or scrapes on the skin; and the bonfire model, which compares inflammation to a fire in need of extinguishing. While the use of militaristic metaphors is pervasive in medicine, describing autoimmunity as a battle against the self may lead children to perceive their body as the enemy. This may be compounded by describing the immune system as "confused" while noting its ongoing protective function. Use of these explanatory models may nevertheless improve patient disease-related knowledge.

How Should We Allocate Divisible Resources? An Overlooked Question.

AbstractThe 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.

Hospital Physicians' Perspectives on Occupational Stress During COVID-19: a Qualitative Analysis from Two US Cities.

BACKGROUND: US physicians are at risk for high rates of occupational stress and burnout, which the COVID-19 pandemic has intensified. As approaches targeting physicians' individual resilience have fallen short, researchers are increasingly calling for studies that investigate organizational drivers of stress and burnout. OBJECTIVE: To understand the multi-dimensional systems factors shaping hospital physicians' occupational stress during the pandemic. DESIGN: Qualitative, semi-structured interviews conducted in February-October 2021. SETTING: Hospitals in New York City and New Orleans. PARTICIPANTS: A purposive snowball sample of attending physicians and fellows in hospital medicine, emergency medicine, pulmonary critical care, and palliative care who spent at least 4 weeks providing inpatient COVID-19 care beginning in March 2020 was selected. The sample included 40 physicians from 14 hospitals in New York City and 39 physicians from nine hospitals in New Orleans. APPROACH: Descriptive analysis of participants' self-reported perceptions of occupational stress. KEY RESULTS: Participants identified multiple factors shaping their occupational stress including individual-level factors such as age, work experience, and life stage; institutional-level factors such as resource disparities, institutional type and size, and policies; professional-level factors such as informal rationing and medical uncertainty; and societal-level factors such as the federal response, COVID politics, and social inequalities. Stressors within and across these four levels worked in combination to shape physicians' perceptions of occupational stress at the individual level. CONCLUSIONS: This article contributes to an emergent literature on systems-based approaches to occupational stress and burnout among physicians by demonstrating the intersections among societal conditions, professional cultures, institutional work environments, and individual stress. Findings from semi-structured interviews suggest that interventions to reduce physician stress and burnout may be more effective if they target systems factors and stressors at multiple levels.

Moral Stress and Moral Distress: Confronting Challenges in Healthcare Systems under Pressure.

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.

Multidimensional stressors and protective factors shaping physicians' work environments and work-related well-being in two large US cities during COVID-19.

INTRODUCTION: Clinician burnout and poor work-related well-being reached a critical inflection point during the COVID-19 pandemic. This article applies a novel conceptual model informed by the Total Worker Health® approach to identify and describe multilevel stressors and protective factors that affected frontline physicians' work environments and work-related well-being. METHODS: We conducted a qualitative study of hospital-based physicians from multiple hospital types in Los Angeles and Miami who cared for COVID-19 patients. Semistructured interviews lasting 60-90 min were conducted over Zoom. Interview transcripts were thematically coded using Dedoose qualitative software. RESULTS: The final sample of 66 physicians worked in 20 hospitals. Stressors in the social, political, and economic environment included dealing with the politicization of COVID-19, including vaccine hesitancy; state and federal governmental COVID-19 policies and messaging; and shifting CDC guidance. Employment and labor pattern stressors included the national nursing shortage, different policies for paid time off, furloughs, reduced pay, and layoffs. Organizational-level stressors included institutional policies, staffing constraints and high patient volume (i.e., increased number of cases and longer lengths of stay), and perceived poor leadership. At the individual worker level, stressors included concerns about viral transmission to family, strained personal relationships, and work-life fit, particularly for those with young children. Respondents identified promising protective factors at multiple levels, including responsive state leadership, job security, concrete opportunities to provide input into institutional policy, strong leadership and communication, and feeling cared for by one's institution. CONCLUSION: Findings support a multi-level strategy that acknowledges internal organizational and external factors shaping clinicians' work-related well-being, consistent with the Total Worker Health® approach.

Protecting Practitioners in Stressed Systems: Translational Bioethics and the COVID-19 Pandemic.

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.

Dirty Work in Medicine: Understanding U.S. Physicians' Agency in Contested Medical Practices.

Physicians who participate in abortion and medically assisted death in the United States work at the margins of institutionalized medicine. What motivates them to engage in such "dirty work"? This article uses ethnographic materials from two recent projects to analyze physicians' roles as gatekeepers to contested medical services. Abortion and medically assisted death share many similarities: They are both deeply stigmatized practices that are heavily restricted in many U.S. jurisdictions, and which many physicians are reluctant to participate in for moral, religious, or professional reasons. They both also confer medicine with the power to govern life and death decisions through the apparatus of state law. However, state laws operate quite differently on physicians in these two cases, with different outcomes. This comparative analysis demonstrates how dirty work in medicine enrolls the agency and subjectivity of physicians in distinctive ways that may be eclipsed by totalizing biopolitical frameworks. [abortion, medical aid in dying, physicians, agency, biopolitics, United States].

Society for Medical Anthropology Statement on Supreme Court Dobbs v. Jackson Women's Health Organization Decision.

This statement summarizes key findings from anthropological and related scholarship on the harmful consequences of inadequate abortion access, leading the Society for Medical Anthropology to register profound concern about the recent Supreme Court decision in Dobbs v. Jackson. After circulation to SMA members for input, a finalized version passed a membership vote by an overwhelming margin. This statement complements one produced by the Council for Anthropology and Reproduction, available here.

Narratives of prevention and redemption in opioid overdose obituaries.

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.

Improving the Continuity of Care for People Living with HIV Experiencing Incarceration in North Carolina Jails: Stakeholder Perspectives.

BACKGROUND Jail detention can disrupt the continuity of care for people living with HIV/AIDS (PLWH). Using a state's "Data to Care" (D2C) program might help overcome this barrier, but raises important questions of data security, personal privacy, resource allocation, and logistics.METHODS As part of a study involving in-depth expert stakeholder interviews, a 1-day workshop was convened to identify and discuss potential ethical challenges in extending North Carolina's D2C program to jail settings. Workshop participants included public health officials, community advocates, HIV clinicians, jail administrators, privacy experts, criminal justice researchers, and a formerly incarcerated PLWH. Workshop participants discussed the results of earlier stakeholder interviews with the goal of identifying the most important points to consider in assessing the merits of extending D2C surveillance to jail settings.RESULTS Although the workshop participants expressed support for improving the continuity of HIV care for jail detainees, they had mixed perspectives on whether a jail-based D2C program should include in-jail or post-release follow-up interventions. Their positions were influenced by their views on 4 sets of implementation issues: privacy/data-sharing; government assistance/overreach; HIV criminalization/exceptionalism; and community engagement.LIMITATIONS The limitations of this stakeholder engagement exercise include its purposive recruitment, relatively small number of participants, and limited duration.CONCLUSIONS Improving the continuity of HIV care in particular jail settings will depend on a number of local considerations. In deciding between models featuring in-jail and post-release follow-up care, the most important of these considerations will be the possibility of establishing good partnerships between the jail, the health department, and the community. Additional research on the dynamics and impact of different models is needed.

Expert stakeholders' perspectives on a Data-to-Care strategy for improving care among HIV-positive individuals incarcerated in jails.

Data-to-Care (D2C) uses surveillance data (e.g., laboratory, Medicaid billing) to identify out-of-care HIV-positive persons to re-link them to care. Most US states are implementing D2C, yet few studies have explored stakeholders' perspectives on D2C, and none have addressed these perspectives in the context of D2C in jail. This article reports findings from qualitative, semi-structured interviews conducted with expert stakeholders regarding their perspectives on the ethical challenges of utilizing D2C to understand and improve continuity of care among individuals incarcerated in jails. Participants included 47 professionals with expertise in ethics and privacy, public health and HIV care, the criminal justice system, and community advocacy. While participants expressed a great deal of support for extending D2C to jails, they also identified many possible risks. Stakeholders discussed many issues specific to D2C in jails, such as heightened stigma in the jail setting, the need for training of jail staff and additional non-medical community-based resources, and the high priority of this vulnerable population. Many experts suggested that the actual likelihood of benefits and harms would depend on contextual details. Implementation of D2C in jails may require novel strategies to minimize risk of disclosing out-of-care patients' HIV status.

Health Care Providers' Experiences with Implementing Medical Aid-in-Dying in Vermont: a Qualitative Study.

BACKGROUND: The evolving legal landscape for medical aid-in-dying (AID) in the USA raises clinical and public health challenges and concerns regarding how health care providers will accommodate AID while expanding access to high-quality end-of-life care. OBJECTIVE: To describe Vermont health care providers' experiences practicing under the "Patient Choice and Control at End of Life" Act. DESIGN: Qualitative semi-structured interviews analyzed using grounded theory. PARTICIPANTS: The larger study included 144 health care providers, terminally ill patients, caregivers, policy stakeholders, and other Vermont residents working in 10 out of Vermont's 14 counties. This article reports on a subset of 37 providers who had clinical experience with the law. MAIN MEASURES: Themes from interviews. KEY RESULTS: Physicians were roughly split between hospital and community-based practices. Most were women (68%) and the largest subgroup specialized in internal or family medicine (53%). Most of the nurses and social workers were women (89%) and most worked for hospice and home health agencies (61%). We identified five domains in which participants engaged with AID: (1) clinical communication and counseling; (2) the Act 39 protocol; (3) prescribing medication; (4) planning for death; and (5) professional education. How providers experienced these five domains of clinical practice depended on their practice setting and the supportive resources available. CONCLUSION: Health care providers' participation in AID involves clinical tasks outside of responding to patients' requests and writing prescriptions. Research to identify best practices should focus on all domains of clinical practice in order to best prepare providers.

Supporting OB-GYNs in Abortion-Restrictive States-A Playbook for Institutions.

This Viewpoint provides proposed institutional practices, such as medicolegal collaboration and providing materials and resources, to support obstetrician-gynecologists (OB-GYNs) in abortion-restrictive states.

Access to Aid-in-Dying in the United States: Shifting the Debate From Rights to Justice.

Much of the literature on aid-in-dying (AID) has drawn heavily on rights-based ethical and legal frameworks that emphasize patients' rights of self-determination in end-of-life decision-making. Less attention has focused on how terminally ill people actually experience such putative rights once they are legally authorized. This analytic essay draws on findings from the Vermont Study on Aid-in-Dying, an ethnographic study of the implementation of AID in Vermont (2015-2017). First, I show that terminally ill people can face a range of barriers to accessing AID in permissive jurisdictions, and that access to AID is mediated by various inequalities endemic to US health care, as well as some that are unique to AID. I then build on these findings to examine the utility of the concept of justice for public health scholarship on AID. By integrating empirical, ethical, and policy analysis, I reframe rights-based frameworks that emphasize the role of individual choice and decision-making at the end of life. In doing so, I draw attention to health care justice as a neglected issue in public health perspectives on AID.

Choreographing Death: A Social Phenomenology of Medical Aid-in-dying in the United States.

This article draws on ethnographic research on the implementation of Vermont's 2013 medical aid-in-dying (AID) law to explore a fundamental paradox: While public discourse characterizes AID as a mechanism for achieving an individually controlled autonomous death, the medico-legal framework that organizes it enlists social support and cultivates dependencies. Therefore, while patients pursuing AID may avoid certain types of dependency-such as those involved in bodily care-the process requires them to affirm and strengthen other bureaucratic, material, and affective forms. By tracing the social phenomenology of several AID deaths, I illustrate how AID results in distinctive forms of sociality and dependency that require terminally ill people and caregivers to embrace a collaborative stance toward choreographing death. I argue that assisted dying offers an opportunity to resist dominant U.S. cultural narratives that view dependency in purely negative terms and reimagine the relationships between disability, dependency, and care at the end of life.

Aid-in-dying laws and the physician's duty to inform.

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 (AID) 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.

Keeping out and getting in: reframing emergency department gatekeeping as structural competence.

Sociologists have tended to frame medical gatekeeping as an exclusionary social practice, delineating how practitioners and clerical staff police the moral boundaries of medicine by keeping out patients who are categorised as 'bad', 'deviant', or otherwise problematic. Yet medical gatekeeping, understood more broadly, can include not only keeping patients out of particular clinical settings, but also redirecting them to alternative sources of care. In this article, I draw on qualitative analysis of audio-recorded patient-provider interactions in a United States emergency department (ED) to illustrate medical gatekeeping as a two-step process of, first, categorising certain patient complaints as unsuitable for treatment within a particular setting, and second, diverting patients to alternative sites for care. I refer to these as the restrictive and facilitative components of medical gatekeeping to denote how each relates to patients' access to care, recognising that both components of medical gatekeeping are part of a coordinated organisational strategy for managing resource scarcity. By illustrating how ED providers reveal intimate knowledge of structural vulnerabilities in diverting socioeconomically disadvantaged patients with chronic back pain to clinical sites that are better equipped to provide care, I suggest that we rethink the emphasis on restrictive practices in sociological accounts of medical gatekeeping.

Abortion providers, professional identity, and restrictive laws: A qualitative study.

Most studies on the impact of restrictive abortion laws have focused on patient-level outcomes. To better understand how such laws affect providers, we conducted a qualitative study of 27 abortion providers working under a restrictive law in North Carolina. Providers derived professional identity from their motivations, values, and experiences of pride related to abortion provision. The law affected their professional identities by perpetuating negative characterizations of their profession, requiring changes to patient care and communication, and creating conflicts between professional values and legal obligations. We conclude that a holistic understanding of the impact of abortion laws should include providers' perspectives.