Shared risk and shared responsibility: the ethics of male contraceptives.

INTRODUCTION: Efforts to develop reversible male contraceptives analogous to female oral contraceptives are underway and may be introduced in the next decade. The advent of novel male contraceptives provides an opportunity for an ethical reformulation of the contraceptive paradigm given the relational, rather than individual, nature of sexual relationships, and family planning. For individuals in any sexual relationship that could result in pregnancy, issues of reproductive autonomy, freedom, equality in reproductive decision-making and risks-both of side effects and of unintended pregnancies-are significant. Historically, however, women have been attributed the greatest responsibilities simultaneously with the most restrictions on their freedom of choice and access to reproductive care. OBJECTIVES: In this paper, we extend our prior "shared risk" model of male contraception to one of "shared risk and responsibility" to ethically inform this discourse. CONCLUSIONS: This updated framework more fully captures the complexity of this novel technology and may be of use to regulatory and legal agencies grappling with an intervention that poses medical risks to the member of the relationship who does not face risks of becoming pregnant.

Retrospective analysis of equity-based optimization for COVID-19 vaccine allocation.

Marginalized racial and ethnic groups in the United States were disproportionally affected by the COVID-19 pandemic. To study these disparities, we construct an age-and-race-stratified mathematical model of SARS-CoV-2 transmission fitted to age-and-race-stratified data from 2020 in Oregon and analyze counterfactual vaccination strategies in early 2021. We consider two racial groups: non-Hispanic White persons and persons belonging to BIPOC groups (including non-Hispanic Black persons, non-Hispanic Asian persons, non-Hispanic American-Indian or Alaska-Native persons, and Hispanic or Latino persons). We allocate a limited amount of vaccine to minimize overall disease burden (deaths or years of life lost), inequity in disease outcomes between racial groups (measured with five different metrics), or both. We find that, when allocating small amounts of vaccine (10% coverage), there is a trade-off between minimizing disease burden and minimizing inequity. Older age groups, who are at a greater risk of severe disease and death, are prioritized when minimizing measures of disease burden, and younger BIPOC groups, who face the most inequities, are prioritized when minimizing measures of inequity. The allocation strategies that minimize combinations of measures can produce middle-ground solutions that similarly improve both disease burden and inequity, but the trade-off can only be mitigated by increasing the vaccine supply. With enough resources to vaccinate 20% of the population the trade-off lessens, and with 30% coverage, we can optimize both equity and mortality. Our goal is to provide a race-conscious framework to quantify and minimize inequity that can be used for future pandemics and other public health interventions.

Perspectives About Racism and Patient-Clinician Communication Among Black Adults With Serious Illness.

Importance: Black patients with serious illness experience higher-intensity care at the end of life. Little research has used critical, race-conscious approaches to examine factors associated with these outcomes. Objective: To investigate the lived experiences of Black patients with serious illness and how various factors may be associated with patient-clinician communication and medical decision-making. Design, Setting, and Participants: In this qualitative study, one-on-one, semistructured interviews were conducted with 25 Black patients with serious illness hospitalized at an urban academic medical center in Washington State between January 2021 and February 2023. Patients were asked to discuss experiences with racism, how those experiences affected the way they communicated with clinicians, and how racism impacted medical decision-making. Public Health Critical Race Praxis was used as framework and process. Main Outcomes and Measures: The experience and of racism and its association, as described by Black patients who had serious illness, with patient-clinician communication and medical decision-making within a racialized health care setting. Results: A total of 25 Black patients (mean [SD] age, 62.0 [10.3] years; 20 males [80.0%]) with serious illness were interviewed. Participants had substantial socioeconomic disadvantage, with low levels of wealth (10 patients with 0 assets [40.0%]), income (annual income <$25 000 among 19 of 24 patients with income data [79.2%]), educational attainment (mean [SD] 13.4 [2.7] years of schooling), and health literacy (mean [SD] score in the Rapid Estimate of Adult Literacy in Medicine-Short Form, 5.8 [2.0]). Participants reported high levels of medical mistrust and high frequency of discrimination and microaggressions experienced in health care settings. Participants reported epistemic injustice as the most common manifestation of racism: silencing of their own knowledge and lived experiences about their bodies and illness by health care workers. Participants reported that these experiences made them feel isolated and devalued, especially if they had intersecting, marginalized identities, such as being underinsured or unhoused. These experiences were associated with exacerbation of existing medical mistrust and poor patient-clinician communication. Participants described various mechanisms of self-advocacy and medical decision-making based on prior experiences with mistreatment from health care workers and medical trauma. Conclusions and Relevance: This study found that Black patients' experiences with racism, specifically epistemic injustice, were associated with their perspectives on medical care and decision-making during serious illness and end of life. These findings suggest that race-conscious, intersectional approaches may be needed to improve patient-clinician communication and support Black patients with serious illness to alleviate the distress and trauma of racism as these patients near the end of life.

Retrospective Analysis of Equity-Based Optimization for COVID-19 Vaccine Allocation.

Marginalized racial and ethnic groups in the United States were disproportionally affected by the COVID-19 pandemic. To study these disparities, we construct an age-and-race-stratified mathematical model of SARS-CoV-2 transmission fitted to age-and-race-stratified data from 2020 in Oregon and analyze counter-factual vaccination strategies in early 2021. We consider two racial groups: non-Hispanic White persons and persons belonging to BIPOC groups (including non-Hispanic Black persons, non-Hispanic Asian persons, non-Hispanic American Indian or Alaska Native persons, and Hispanic or Latino persons). We allocate a limited amount of vaccine to minimize overall disease burden (deaths or years of life lost), inequity in disease outcomes between racial groups (measured with five different metrics), or both. We find that, when allocating small amounts of vaccine (10% coverage), there is a trade-off between minimizing disease burden and minimizing inequity. Older age groups, who are at a greater risk of severe disease and death, are prioritized when minimizing measures of disease burden, and younger BIPOC groups, who face the most inequities, are prioritized when minimizing measures of inequity. The allocation strategies that minimize combinations of measures can produce middle-ground solutions that similarly improve both disease burden and inequity, but the trade-off can only be mitigated by increasing the vaccine supply. With enough resources to vaccinate 20% of the population the trade-off lessens, and with 30% coverage, we can optimize both equity and mortality. Our goal is to provide a race-conscious framework to quantify and minimize inequity that can be used for future pandemics and other public health interventions.

Addressing Racism in Ethics Consultation: An Expansion of the Four-Box Method.

AbstractRacism is a pervasive issue in patient care and a key social determinant of health. Clinical ethicists, like others involved in patient care, have a duty to recognize and respond to racism on both individual and systems-wide levels to improve patient care. Doing so can be challenging and, like other skills in ethics consultation, may benefit from specialized training, standardized tools and approaches, and practice. Learning from existing frameworks and tools, as well as building new ones, can help guide clinical ethicists to systematically approach racism as it affects clinical cases. Here, we propose an expansion of the commonly used four-box method to clinical ethics consultation, where racism is considered as a potential factor in each of the four boxes. We apply this method to two clinical cases to highlight ethically salient information that might be missed using the standard formulation of the four boxes but captured with the expanded version. We argue that this expansion of an existing clinical ethics consultation tool is ethically justified insofar as it (a) creates a more just approach, (b) supports individual consultants and services, and (c) facilitates communication in contexts where racism impinges on effecting good patient care.

What the 'greater good' excludes: Patients left behind by pre-operative COVID-19 screening in an Ethiopian town.

During the coronavirus disease 2019 (COVID-19) pandemic, bioethical analyses often emphasized population health and societal benefit. Hospital policies frequently focused on reducing risk of transmitting SARS-CoV-2 by restricting visitors; requiring protective equipment; and screening staff, patients and visitors. While restrictions can be burdensome, they are often justified as essential measures to protect the whole population against a virus with high rates of transmission, morbidity and mortality. Yet communities are not monolithic, and the impacts of these restrictions affect different groups differently. An ophthalmological unit outreach program in Ethiopia serves to illustrate. Pre-operative screening policies were designed to protect as many patients as possible but had adverse impacts on underserved communities. As this case study demonstrates, creating hospital policies that truly serve the good of the society may require a more holistic review of impacts on inequitably positioned communities.

Transformative Justice in Ethics Consultation.

Clinical ethics consultants bear witness to the direct harms of intersecting axes of oppression-such as racism and classism-as they impinge on elucidating and resolving ethical dilemmas in health care. Health Care Ethics Consultation (HCEC) professional guidance supports recognizing and analyzing power dynamics and social-structural obstacles to good care. However, the most relied upon bioethical principles in clinical ethics have been criticized for insufficiency in this regard. While individual ethics consultants have found ways to expand their approaches, they do so in an ad hoc way without frameworks to guide consistency. Motivated by the practical expertise of clinical ethicists, this essay offers a new framework to support openness to analyzing power imbalances and respecting marginalized voices and values. This framework is grounded in transformative justice, where the aim is to take responsibility for oppression by centering and responding to moral perspectives and value systems that are all too often silenced.

Discharging to the Street: When Patients Refuse Medically Safer Options.

The ethical obligation to provide a reasonably safe discharge option from the inpatient setting is often confounded by the context of homelessness. Living without the security of stable housing is a known determinant of poor health, often complicating the safety of discharge and causing unnecessary readmission. But clinicians do not have significant control over unjust distributions of resources or inadequate societal investment in social services. While physicians may stretch inpatient stays beyond acute care need in the interest of their patients who are experiencing homelessness, they must also consider the implications of using an inpatient hospital bed for someone without the attendant level of medical need. Caring for patients in an inpatient setting when they no longer require acute care means fewer beds for acute care patients. And when a patient who is experiencing homelessness declines a medically safer option such as a skilled nursing facility, then clinicians may be faced with the sole option of discharge to the street, which raises troubling questions of nonmaleficence and social justice. Here we investigate the different forms of injustice that play out when patients are discharged to the street, and offer a map of the interwoven ethical responsibilities of clinicians, hospitals, and skilled nursing facilities.

Antiracist Activism in Clinical Ethics: What's Stopping Us?

Although justice is a central principle in clinical ethics, work that centers social justice is often marginalized in clinical ethics. In addition to institutional barriers that may be preventing clinical ethicists from becoming the activists that Meyers argues we should be, we must also recognize the barriers embedded in the field of clinical ethics itself. As clinical ethicists, we have an opportunity to support anti-racism work in particular by altering our own organizational structures to be more inclusive and reflective of the Black, Indigenous, and other communities of color we serve, enhancing clinical ethics education and training by making critical theories foundational, and decolonizing our clinical ethics consultation tools and practices.

Living with the Unknown: A Qualitative Study of Parental Experience of Prognostic Uncertainty in the Neonatal Intensive Care Unit.

OBJECTIVE: This study aims to characterize the experience of prognostic uncertainty for neonatal intensive care unit (NICU) parents. STUDY DESIGN: We conducted a qualitative interview study of current and former NICU parents regarding their experience with prognostic uncertainty in the NICU. Interviews were transcribed and analyzed using a grounded theory methodology. RESULTS: Twenty-four parents were interviewed before achieving thematic saturation. Three phases of the parental experience of prognostic uncertainty emerged: shock, gray daze, and looking forward. These phases often, but not always, occurred sequentially. In shock, parents felt overwhelmed by uncertainty and were unable to visualize a future for their family. In gray daze, parents felt frustrated by the continued uncertainty. While accepting the possibility of a future for their family, they could not conceptualize a path by which to achieve it. In looking forward, parents accepted uncertainty as inevitable and incorporated it into their vision of the future. CONCLUSION: While each parent experienced the prognostic uncertainty in the neonatal intensive care unit in their own way, we found three common experiential phases. By understanding how a parent experiences prognostic uncertainty in these phases, providers may become better able to communicate and form therapeutic relationships with parents.

Relational suffering and the moral authority of love and care.

Suffering is a ubiquitous yet elusive concept in health care. In a field devoted to the pursuit of objective data, suffering is a phenomenon with deep ties to subjective experience, moral values, and cultural norms. Suffering's tie to subjective experience makes it challenging to discern and respond to the suffering of others. In particular, the question of whether a child with profound neurocognitive disabilities can suffer has generated a robust discourse, rooted in philosophical conceptualizations of personhood as well as the academic and experiential expertise of practiced health-care professionals. The issue remains unresolved because it is difficult, perhaps impossible, to ever truly know an infant's lived experience. But what if this is not the best question? What if instead of asking "can this infant suffer?" the discourse is broadened to ask "is there suffering here?" This latter question demands attention to patients' subjective experiences of suffering, but also to the web of relationships that envelop them. Without losing sight of the importance of patients' experiences, consideration of their relationships may elucidate the presence of suffering when the patients themselves are unable to provide the same clarity. In this essay, care ethics frames an examination of how suffering manifests in the loving and caring relationships that surround an infant with profound neurocognitive disabilities, changing those relationships and affecting the individuals within them. Exploring suffering through these relationships may offer clarity on the presence and content of suffering for infants with profound cognitive disabilities, in turn offering moral guidance for responding to suffering and supporting flourishing in this context.

Creating Space for Feminist Ethics in Medical School.

Alongside clinical practice, medical schools now confront mounting reasons to examine nontraditional approaches to ethics. Increasing awareness of systems of oppression and their effects on the experiences of trainees, patients, professionals, and generally on medical care, is pushing medical curriculum into an unfamiliar territory. While there is room throughout medical school to take up these concerns, ethics curricula are well-positioned to explore new pedagogical approaches. Feminist ethics has long addressed systems of oppression and broader structures of power. Some of its established concepts can offer distinct value as medical climates change and adapt in response to increased awareness of the experiences of marginalized individuals and populations. In this essay, we offer a set of concepts from feminist ethics that have a fundamental role to play in medical school curriculum: relationality, relational autonomy, and epistemic justice. Though these concepts are not exhaustive, they can be taught in tandem with the concepts that have historically grounded ethics education in medical school, such as autonomy and beneficence. Ultimately, we contend that these concepts hold particular value in ethics curriculum insofar as they diversify mainstream ethical approaches, directly address the pervasiveness of systems of oppression in medicine, and recognize the voices and concerns that may be marginalized in standard approaches.

Care Labor in VAD Therapy: Some Feminist Concerns.

Ventricular assist device (VAD) care offers a distinctive lens through which we can explore unjust gender norms. This is a resource-intensive intervention, one in which increasingly sophisticated technology brings with it the need for more long-term care. This care work is demanding, involving device maintenance, medication and appointment management, household work, and emotional support. Most patients eligible for receiving VADs are men, so it is not surprising that it is more often women who are responsible for the care of patients with VADs. Still, there is room to question why so much of this labor is expected of and taken on by female caregivers, when it could be shared with male caregivers and even patients themselves. To the extent that gender difference in the distribution of this labor is avoidable and inequitable, it becomes in part a disparity resulting from unjust social norms. In order to unpack some of this injustice, the authors utilize empiric data and theoretical work in feminist ethics to articulate some of the mechanisms of the gender disparity in VAD care labor and to offer communitarian decision-making and redistribution of care labor as potential routes toward greater justice for women with respect to VAD therapy.

The Relational Potential Standard: Rethinking the Ethical Justification for Life-Sustaining Treatment for Children with Profound Cognitive Disabilities.

In this era of rapidly advancing biomedical technologies, it is not unusual for parents of children with profound cognitive disabilities to ask clinicians to provide invasive life-sustaining treatments. Parental requests for such interventions pose a moral dilemma to the treating medical team, as there may be a discrepancy between the team's perception of the child's best interest and the apparent rationale underlying a parent's request. This gap highlights the limitation of the best interest standard in cases where, due to a neurodevelopmental disorder or brain injury, the child's capabilities are severely limited and their interests may be difficult to discern. The harm principle is also inadequate for decision-making in response to these parental requests. To address these limitations, and inspired in part by John Arras's work on the relational potential standard, we propose an integration of care ethics within pediatric decision-making using a new version of this standard. The potential for children to be in caring and loving relationships with their parents, what we will call "relational potential," may provide an ethical justification for clinicians to support parental requests for life-sustaining treatments.

Empathetic Practice: The Struggle and Virtue of Empathizing with a Patient's Suffering.

In this article, our analysis of empathy in the clinical context hinges on the complexities of patients who are acutely suffering. Using a case concerning a heart transplant patient with Duchenne muscular dystrophy, Alex, and his nurse, Joe, we investigate how empathy's phenomenological nebulousness can generate doubts about its virtue. Even when asking, "How are you, Alex?" Joe hates the question; it seems empty, silly. Cases like this show both that the enactment of empathy is sometimes challenging and that it can be reasonable to wonder if empathy is a virtue at all. Perhaps Alex's suffering is simply too massive: Joe cannot possibly know how he feels, so why try? Perhaps empathy would only cause Joe to suffer along with Alex. Not only is empathy difficult to produce in the context of Alex's suffering; it may not even be possible; and if we simply cannot muster empathy, what is the point of morally demanding it? In response, we distinguish different kinds of empathic engagements from one another and offer separate counsel. We argue that it is important to understand empathy as something that must be honed across varied contexts before it can be called a virtue. Conceptualizing and operationalizing empathy in this way helps to ground its possibility and virtue even in the most challenging and complex clinical encounters.