Enacting Relational Public Health: Federally Qualified Health Centers During the COVID-19 Pandemic.

Federally Qualified Health Centers (FQHCs) proved to be critical points of access for people of color and other underserved populations during the COVID-19 pandemic, administering 61% of their COVID-19 vaccinations to people of color, compared to the 40% rate for the overall United States' vaccination effort. To better understand the approaches and outcomes of FQHCs in pandemic response, we conducted semi-structured interviews with FQHC health care providers and outreach workers and analyzed them using an inductive qualitative methodology.

Opening the Door: Rethinking "Difficult Conversations" about Living and Dying with Dementia.

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.

Choice in the Context of Dementia: Emerging Issues for Health Care Practice in Aging Societies.

This introduction to the special report "Facing Dementia: Clarifying End-of-Life Choices, Supporting Better Lives" explains why focused attention to dementia is needed in bioethics and in health care practice in a range of settings. It explains how this strongly age-associated condition shapes individual lives over years, revealing inequities in how dementia care is financed. The introduction explains the structure of the report, which consists of five essays, a consolidated set of recommendations from these essays, bibliographies, and other resources. The first essay is a landscape review written for health care professionals to support discussion, debate, and deliberation within professional societies and networks concerning a patient's voluntary choice to hasten their own death in the context of a dementia diagnosis. The landscape review is followed by three essays that suggest how several familiar concepts within care for persons with serious illness should be rethought to better support advance care planning, physician-patient conversations, and access to community-based palliative care and hospice when a person is facing dementia. The final essay presents a bold, practical argument for supporting better lives for people facing dementia, and for dementia caregivers, through primary care, the usual source of care for people with dementia.

"We're Here to Take Care of Our Community": Lessons Learned From the U.S. Federal Health Center Covid-19 Vaccine Program.

Equitable access to vaccination is crucial to mitigating the disproportionate impact of Covid-19 on low-income communities and people of color in the United States. As primary care clinics for medically underserved patients, Federally Qualified Health Centers (FQHCs) emerged as a success story in the national effort to vaccinate the U.S. public against Covid-19. In February 2021, the Federal Health Center Covid-19 Vaccine Program began allocating vaccine supply directly to FQHCs in an effort to improve vaccine equity. This qualitative study documents how FQHCs in two states successfully mitigated barriers to vaccine access, responded to patient concerns about vaccination, and worked to maintain and grow community trust in a climate of uncertainty and fear during early vaccine roll-out to the general population. Using a socio-ecological model, we show how FQHCs intervened at multiple levels to advance vaccine equity, revealing valuable lessons for health promotion practice in primary care settings or underserved communities. Our findings provide descriptive context for existing quantitative evidence showing FQHCs' greater success in vaccinating people of color, and foreground valuable and innovative strategies for trustworthy health communication practices and equitable resource allocation to medically underserved patients and populations.

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.

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.

Centering Home Care in Bioethics Scholarship, Education, and Practice.

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.

All of Us and the Promise of Precision Medicine: Achieving Equitable Access for Federally Qualified Health Center Patients.

The United States National Institutes of Health's (NIH) All of Us (AoU) initiative recruits participants from diverse backgrounds to improve the makeup of biobanks, considering nearly all biospecimens used in research come from people of European ancestry. Participants who join AoU consent to provide samples of blood, urine, and/or saliva and to submit their electronic health record to the program. In addition to diversifying precision medicine research studies, AoU will return genetic results back to many participants, which may require further follow-up care (i.e., more frequent cancer screening or mastectomy after a BRCA result). To help achieve its goals, AoU has partnered with Federally Qualified Health Centers (FQHCs), which is a type of community health center whose patient base is comprised largely of people who are uninsured, underinsured, or on Medicaid. Our NIH-funded study convened FQHC providers involved in AoU to better understand precision medicine in community health settings. Drawing from our findings, we present barriers community health patients and their providers face when accessing diagnostics and specialty care after genetic results necessitate medical follow-up care. We also propose several policy and financial recommendations to help overcome the challenges discussed, stemming from a commitment to equitable access to precision medicine advances.

The impact of health inequities on physicians' occupational well-being during COVID-19: A qualitative analysis from four US cities.

OBJECTIVE: The aim of this study is to describe frontline physicians' perceptions of the impact of racial-ethnic and socioeconomic disparities in COVID-19 infection and mortality on their occupational well-being. METHODS: One hundred and forty-five qualitative, semistructured interviews were conducted between February 2021 and June 2022 with hospital medicine, emergency medicine, pulmonary/critical care, and palliative care physicians caring for hospitalized COVID-19 patients in four US cities. RESULTS: Physicians reported encountering COVID-related health disparities and inequities at the societal, organizational, and individual levels. Encountering these inequities, in turn, contributed to stress among frontline physicians, whose concerns revealed how structural conditions both shaped COVID disparities and constrained their ability to protect populations at risk from poor outcomes. Physicians reported feeling complicit in the perpetuation of inequities or helpless to mitigate observed inequities and experienced feelings of grief, guilt, moral distress, and burnout. CONCLUSIONS: Health inequities are an under-acknowledged source of physicians' occupational stress that requires solutions beyond the clinical context.

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.

Ethical Challenges Experienced by Clinical Ethicists during COVID-19.

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.

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.

Not Wanting to Lose the Dignity of Risk: On Living Alone with Dementia.

Of the more than 47 million people living with Alzheimer's disease or other types of dementia, an estimated one-third live alone. This essay explores the idea of the dignity of risk as it presents in the lives of people living alone with dementia, an underrepresented group in research, and considers the tension between safeguarding people with dementia from risks associated with disease progression and denying them the experience of risk as an aspect of everyday life. For individuals, risk is associated with vulnerability, choice, uncertainty, and the pursuit of goals, and may hold positive and negative connotations. This essay considers how myriad choices in the everyday lives of people living alone with dementia present some degree of risk, and how the ability to make these choices may constitute a life of dignity, replete with meaning and richness. The essay concludes with suggestions about how to reframe living alone with dementia as a way of living that can be better socially supported.

Inclusion of people living with Alzheimer's disease or related dementias who lack a study partner in social research: Ethical considerations from a qualitative evidence synthesis.

BACKGROUND: Because use of a study partner (proxy decision-maker) to give informed consent on behalf of someone living with Alzheimer's disease or related dementias (ADRD) is common in nearly all clinical research, people living with ADRD who lack a study partner are regularly excluded from participation. Social research presents different opportunities and risks than clinical research. We argue that guidelines developed for the latter may be unduly restrictive for social research and, further, that the automatic exclusion of people living with ADRD presents separate ethical challenges by failing to support extant decision-making capacity and by contributing to underrepresentation in research. PURPOSE: The study objective was to identify key components related to including cognitively vulnerable participants who lack a study partner in social research. RESEARCH DESIGN/STUDY SAMPLE: We conducted an adaptive qualitative evidence synthesis (QES) and subsequent content analysis on 49 articles addressing capacity and research consent for potentially cognitively compromised individuals, to include people living with ADRD, who lack a study partner. RESULTS: We identified four major topic areas: defining competency, capacity, and consent; aspects of informed consent; strategies to assess comprehension of risks associated with social research; and risks versus benefits. CONCLUSIONS: Based on findings, we suggest new and ethically appropriate ways to determine capacity to consent to social research, make consent processes accessible to a population experiencing cognitive challenges, and consider the risks of excluding a growing population from research that could benefit millions.

Bioethics and Gerontology: The Value of Thinking Together.

The interdisciplinary field of bioethics focuses on what it means to be a person, flourish as a person, and be respected as a person in different conditions of health, illness, or disability. Bioethics and policy research considers normative questions such as how a good society, through its priorities and investments, should demonstrate its commitments to the lives of different populations. Bioethics and humanities scholarship, often known as "health humanities," shares affinities with age studies and disability studies and with narrative-based approaches to the study of human experience. Gerontology is concerned with the many aspects of life that affect how people age, including social structures and values that influence the experience of growing old. In this article, we briefly explore the evolution of bioethics, from a discourse that emerged in relation to developments in biomedicine, bioscience, and biotechnology; to research ethics; to broader ethical questions emerging from real-world conditions, with attention to how bioethics has considered the experience of aging. Until recently, most age-focused work in bioethics has concerned age-associated illness, particularly end-of-life decision making. Given the reality of population aging and the ethical concerns accompanying the shift in age for most places in the world, the further evolution of bioethics involves greater attention to the support of flourishing in late life and to social justice and health equity in aging societies. We argue that the discourses of bioethics and critical gerontology, in dialogue, can bring a new understanding of privilege and preference, disparity and disadvantage, and reflection and respect for aging individuals.

Hospice Access and Scope of Services for Undocumented Immigrants: A Clinician Survey.

Objectives: To characterize clinician experiences of hospice access and scope of services for undocumented immigrants. Background: The 10.5 million undocumented immigrants in the United States are not covered by Medicare's hospice benefit and are at high risk for being uninsured. Limited data are available regarding hospice services for this population. Setting/Subjects: Two hundred ninety-four interdisciplinary palliative care clinicians from across the United States. Measurements: Participants completed a web-based survey regarding hospice access and scope of services for undocumented immigrants in their location. We used simple frequencies to report clinician responses and chi-square analysis to evaluate associations between response and location. We performed rapid qualitative analysis of free-text responses to identify common limitations in scope of services. Results: A majority of clinicians (68%) perceived that access to hospice was limited or unavailable for undocumented immigrants in their location, and among respondents who provided data regarding hospice scope, 38% reported that services provided to undocumented immigrants were limited compared to those provided to other patients. Reports of restricted access and scope varied by region, and those in large metropolitan areas were more likely to report restricted scope of care than those in smaller towns (43% vs. 28%; p = 0.03). In our qualitative analysis of free-text responses, common limitations in hospice scope included reduced access to medications and equipment, inability to access inpatient hospice, inadequate translation services, reduced staffing, and restricted duration of services. Conclusions: Undocumented immigrants may face barriers in accessing comprehensive hospice services. Public policy changes that improve access to hospice may improve end-of-life care for undocumented immigrants.

Interdependent Citizens: The Ethics of Care in Pandemic Recovery.

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.

Choice Architecture.

"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.