Elizabeth Lanphier

Background Little is understood on how intersectionality and social background of patients and families influence ethical and clinical decision-making, particularly in the critical care setting. This study aims to explore how family identity and socioeconomic features influence the perceived medical appropriateness and ethical permissibility of treatment options for NICU patients when controlling for patient diagnosis and prognosis.Methods We conducted focus groups (n = 7) with interdisciplinary Neonatal Intensive Care Unit (NICU) health care professionals (N = 33) at a single Level IV NICU over an 8-month period. Participants reviewed and discussed a hypothetical case of a neonate with severe neurological impairment. Focus groups received the same medical information regarding the patient and prognosis but were provided 1 of 2 social scenarios where the family’s contextual information (parental education, first language, religion, medical literacy, access to care, family structure, and parental presence at the bedside) were intentionally varied. Comparative thematic analysis was performed.Results Critical differences were identified in the way participants: (1) responded to parental requests for continued intervention and (2) incorporated the family’s education, income, geography, medical literacy, and active presence on the unit in their medical recommendations. Specifically, we found that teams were more open to the idea of accommodating parental requests in the context of increased family resources, than they were in the context of lower family resources.Conclusion Interpretation of family social context by NICU care teams can produce disparities in which interventions are offered, and which parental preferences are accommodated, underscoring the impact of family and social characteristics on clinical care.

Background Making clinical ethics consultation (CEC) services available to patients and their family members is a best practice most hospitals in the United States claim to follow. However, patients and families often lack awareness of CEC and rarely request CEC services. One reason patients and families might underutilize CEC is they lack access to important information about hospitals’ CEC services.Methods Since patients and families often use hospital websites to find information about services, we applied a standardized search protocol to characterize information about CEC services hospitals have published on their own websites or websites of their academic affiliates. Our sample included the top 100 general, adult hospitals in the US identified by Newsweek and Statista in their 2024 ranking of hospitals around the world.Results We found 88 hospitals (88%) had information on their websites indicating availability of CEC services, with 79 (79%) indicating patients and families may request those services. Hospitals with websites indicating availability of CEC services often provided information about how to request CEC (77.3%), how CEC might benefit requesters (69.3%), and a specific phone number for making requests (58%). Other types of potentially important information appeared less often on the hospitals’ websites, such as the names of people who provide CEC (27.3%), an email address for requesting CEC (20.5%), and whether and how the hospital charges for CEC (19.3%).Conclusions This study reveals both needed improvements and potential models of best practice related to providing information about CEC services for patients and families on the websites of leading hospitals in the United States. US hospitals have an opportunity to promote accessibility of CEC by improving the quality of information about CEC services on their websites.

This article reports on a pilot study soliciting patient and caregiver views on trauma-informed principles to influence the provision of trauma-informed ethics consultation (TIEC). The study conducted case-based focus groups with participants (1) to assess the feasibility and efficacy of focus group methodology for collecting information to better understand and describe patient and family perspectives relevant to TIEC and (2) to analyze participant reflections so as to further conceptualize and operationalize TIEC. Overall, the case-based focus group methodology was generally effective. Findings show that patients and families conceptualize trauma-informed principles in ways that overlap with and reinforce each other. For example, safety supports inclusion, and inclusion supports a sense of safety. Preliminary thematic analysis suggests that how one may construe actions and practices as “trauma informed” in ethics consultation is influenced by the individual’s identity, background, and experiences, suggesting that TIEC is an active, iterative process.

Recent philosophical and social conversations around sexual consent focus mainly on two aspects of consent. One consideration is the necessary condition that consent must be present for a sex act to be sex and not rape. The other consideration involves the conditions that are sufficient for consent to be valid. However, it is our contention that these necessary and sufficient conditions oversimplify the social, legal, moral, and interpersonal aspects of sexual experience. Our aim in this paper is to explore and defend the controversial category of “nonconsensual sex.” Accepting the possibility of this category allows us to interrogate the gap between the legal and political objectives of defining and prosecuting rape, and begin to construct a view of ethically ideal sex. We argue that rape and nonconsensual sex are not equivalent, and that institutional responses to rape and sexual assault ought to recognize and address the (albeit problematic) category of nonconsensual sex. We contend that although nonconsensual sex ought not to be legally confused with rape, it is still morally problematic, and should thus be distinguished from fully consensual sex. We then sketch a framework through which institutions should address a range of sexual activity that reflects lived sexual experience. This analysis is in part a response to second-wave feminist and hetero-normative views of rape and sexual assault, which we claim fail to account for the non-binary nature of sex and consent. Our approach is sex-and-desire positive, and focuses on the mutuality of sex without assumptions regarding the sex, gender, sexual orientation or sexual preferences of the persons engaging in potential sex acts.

This article responds to Autumn Fiester’s “TIEC, Trauma Capacity, and the Moral Priority of Surrogate Decision Makers in Futility Disputes,” in which Fiester argues for a vision of trauma-informed ethics consultation that systematically prioritizes the preferences of surrogate decision makers in cases of disagreement between surrogates and clinical teams over continued life-sustaining therapies for severely neurologically impaired patients. We identify three issues arising from Fiester’s article that allow us to clarify our account of trauma-informed ethics consultation on which she builds and that illustrate the need for further research on trauma-informed ethics consultation in both theory and practice. The first issue responds to her charge that ours was an overly “modest” proposal. The second issue is to suggest closer attention to distinctions between ethics consultation process, methods, and content that we argue would enhance Fiester’s account. The third is to better evaluate the appropriate role of “ethically acceptable options” in trauma-informed ethics consultation. In conclusion, we raise several global points regarding the further development of trauma-informed ethics consultation and conceptualizations of trauma-informed care relevant to it.

While on the surface the rapid adoption of generative artificial intelligence (AI) in healthcare signals a new technological innovation that may sideline the social sciences, arts, and literature comprising the medical humanities, we argue that one way to understand the applications of AI based on large language models (LLM) in healthcare is as a deeply narrative project. LLM-based AI endorses narrative and humanistic value insofar as it is trained on vast amounts of narrative data as inputs and generates outputs in narrative formats. We contend that the medical humanities, rather than being replaced by AI in healthcare, are all the more essential to understand the practical and ethical opportunities and constraints for responsible use and integration of such tools. By analyzing two case studies of generative AI in healthcare reported in literature, we show that narrative medicine and the medical humanities provide crucial theoretical frameworks and disciplinary skills to assess, integrate, and critique the roles and impacts of such technologies in healthcare. Rather than offsetting narrative practice via AI, responsible use of LLM-based AI in healthcare requires attention to the functions of narrative in medicine and the importance of the medical humanities.

Lauren Freeman and Heather Stewart (2024) have written a richly researched and argued, while also highly engaging and accessible, book with Microaggressions in Medicine. They argue for why microaggressions are best understood on a harm-based account and situate this view within timely examples from a range of healthcare experiences. In their view, focusing on the harms produced by microaggressions shifts the locus of concern from the agent committing a microaggression to the agent receiving it, and it enables an attribution of a microaggression regardless of an agent's intent or even awareness.Freeman and Stewart leave the reader with an expanded understanding of what microaggressions are and how they function.... Read More.

The Food and Drug Administration (FDA) recently issued its first approval of an oral contraceptive medication for access without a clinician’s prescription. One might expect this will lead to fewer people seeking to terminate unplanned pregnancies, including in states that imposed severe restrictions on abortion care following the Supreme Court’s reversal on abortion rights in Dobbs v. Jackson Women’s Health Organization. Despite the clear potential health benefits, increased accessibility of oral contraceptives offers no real solution to ongoing threats to patients’ reproductive health and moral rights created by post-Dobbs abortion restrictions. To secure their patients’ reproductive health and well-being, clinicians must work to maximize the benefits of OTC oral contraceptives without relenting in their advocacy for safe and accessible abortion care.

We agree with McCullough, Coverdale and Chervenak1 that ‘medical educators and academic leaders are in a pivotal and powerful position to role model’ to counter ‘incivility’ in medicine, which can include ‘dismissing’ or ‘demeaning others’. They note that ‘women may be at greater risk for experiencing incivility compared with men’, as may other individuals who experience ‘patterns of disrespect based on minority status’. The authors promote ‘professionalism’ and ‘etiquette’ to foster civility within medicine. Yet theory and experience suggest that medical educators and academic leaders are also in powerful positions to mobilise these concepts to perpetuate exclusions from, and biases within, medicine, upholding racist, sexist and ableist norms. Feminist methodology reveals how ethical theorising historically excluded views and experiences of marginalised individuals and groups and provides frameworks for interrogating supposedly universal norms. Presuming dominant values and experiences reflect universal ones can further marginalise already oppressed groups and individuals. A feminist analysis reveals how ‘professionalism’ or ‘etiquette’ are historically shaped by white or male identity and experience, including norms of attire, hair, accessories, speech or behaviour. Part of the hidden curriculum of medicine becomes intuiting how leaders implicitly or explicitly define ‘professionalism’. McCullough et al define ‘professionalism’ in medicine as ‘sustained commitments to scientific and clinical excellence… making the protection and promotion of health-related interest the physician’s primary concern …

In ‘The ethics of consent during labour and birth: episiotomies,’ van der Pijl et al 1 respond to the prevalence of unconsented procedures during labour, proposing a set of necessary features for adequate consent to episiotomy. Their model emphasises information sharing, value exploration and trust between a pregnant person and their healthcare provider(s). While focused on consent to episiotomy, van der Pijl et al contend their approach may be applicable to consent for other procedures during labour and beyond pregnancy-related care. One feature of their model for adequate informed consent is trust in the systems in which prenatal and labour and delivery care are provided. Yet, for some pregnant persons, mistrust in health systems is a reasonable sequela of experiences like racism and epistemic injustice. For a programme in which trust is central to adequate consent, it is important to identify—and counter—forms of mistrust toward pregnant persons within healthcare and acknowledge and rectify reasonable mistrust of pregnant persons toward healthcare. Like other kinds of healthcare disparities, van der Pijl et al note that ‘the burden of unconsented procedures is not evenly distributed over groups’ and tracks with ‘racial, socioeconomic and other disparities in maternity care’. They are drawing on data from a less diverse context than the one …

In lieu of an abstract, here is a brief excerpt of the content:Editors' Introduction to the Special Issue on the Translational Work of BioethicsElizabeth Lanphier and Larry R. ChurchillRecent essays in Perspectives and Biology and Medicine, including "Can Clinical Ethics Survive Climate Change" by Andrew Jameton and Jessica Pierce and "Ethical Maxims for a Marginally Inhabitable Planet" by David Schenck and Larry R. Churchill, both appearing in the Autumn 2021 issue, inspired conversations between us, among our colleagues, and with various contributors to this symposium. We asked of ourselves and each other: where can, should, or must bioethics as a field go to make what bioethicists know and publish about in the academic literature relevant to public policy decisions, health and technological innovation, and a general public? In other words, where do we, practically speaking, go with our bioethical insights and discoveries to make a tangible impact on issues like climate change—though that is only one of the various topics that the authors in this symposium tackle.This translational work of connecting scholarly innovation back to overt practical innovation is often peripheral to academic bioethics. It is not the work the academy typically recognizes in its credit system. Yet this translational work is becoming a critical, central duty of bioethics for the 21st century, while the kinds of work the academy most valorizes may be the least important at this time. In particular, the need for translational initiatives is increasingly evident as pandemics linger into a new normal, the long history and ongoing impacts of racism become even more evident at institutional levels, and the devastating health implications of global warming emerge. [End Page 515]Bioethicists function in privileged proximity to the deleterious effects of failed health and social policy, as well the interplay between seemingly personal health choices, such as those related to diet or lifestyle, and inequitable conditions that impact the options available to individuals and groups. We are increasingly distressed by what we see from this privileged window into health. The COVID-19 pandemic has made preexisting social and policy inequities impacting health impossible to ignore. At the same time, the patterns of carbon pollution portend health crises of unprecedent severity and magnitude in the near future—and will likely deepen inequities and disparities already occurring between those most contributing to, and those most harmed by, climate change.As a field, bioethics has, since its start, been at the intersection of theory and practice. But it is not sufficient for the field to reside passively at this crossroads. The field must be constantly innovating new byways and highways, new offshoots from existing pathways and connector roads between them, that build out both the theory and practice of bioethics in a mutually innovative relationship to each other. Bioethics does not make sense without attention to the real-world practices and the lived realities of health and care. The practical engagement is what deepens and enriches theory, in ways that are more responsive to the real world in which bioethicists toil. But it also is not enough to merely contribute to the body of bioethics scholarship. The translational bioethics we envision is also about using novel theories and concepts to actively shape practices and realities; it is a bioethics in which theory and practices mutually influence each other, each reaching out to generate and change the other.This collection of essays, drawn from a diverse number of scholars, offers several promising paths forward. The essays were written in the spring of 2022, two years into the COVID-19 pandemic, two years after the murder of George Floyd and international attention to the movement for Black lives, and for the most part in the weeks just prior to a set of US Supreme Court decisions with enormous impacts on health, including the June 24 Dobbs v. Jackson Women's Health Organization and the June 30 West Virginia v. EPA decisions.The authors are diverse in age, spheres of work, discipline, sex, race, and ethnicity. They expand our vision for what bioethics can and should be. While we have grouped the essays by subject matter, most of the pieces speak to the field as a whole and invite cross-fertilization. We hope readers will find new ideas, old ideas...

ABSTRACT:This essay explores how bioethics as a field, rather than as a collection of individual efforts by bioethicists working within it, can inform deliberation on matters of bioethical import that, for better or worse, are in the hands of civic processes. It is motivated by the repeal of a constitutional protection of abortion access in the Supreme Court Dobbs v. Jackson Women's Health Organization decision, which effectively returned abortion regulations to states rather than setting a baseline federal protection of abortion access up to fetal viability. Given the outsized role of local legislators in shaping health-care policy through legislation, about abortion as well as other health topics, the author proposes foundational bioethical education for legislators and considers two potential models for such education: one that operates on a clinical ethics consultation model, and one that mirrors bioethical coursework taught in traditional academic settings but modified for a legislator audience. Although both models present notable challenges requiring further conceptualization and problem-solving, overcoming these hurdles would enable bioethics to provide a service to civic learning and placemaking that would complement advocacy or lobbying efforts by individual bioethicists.

Background: While employers are increasingly considering and implementing COVID-19 vaccination requirements, little is known about the reasons offered by employees seeking religious exemptions.Methods: We conducted a mixed methods analysis of all the requests for religious exemptions submitted during the initial implementation of a COVID-19 vaccination requirement at a single academic medical center in the United States.Results: Five hundred sixty-five (3.4%) employees requested religious exemptions. At least 305 (54.0%) requesters had job titles suggesting that they had direct patient contact. Four hundred ninety-nine (88.3%) of requesters self-identified as Christian, of whom 120 (21.2%) identified as Roman Catholic. Requesters offered 0 to 8 (mean 2.7) categories of reasons for their request. The most frequently stated reasons pertained to the use of fetal cell lines in vaccine development and manufacturing (382, 67.6%), interest in maintaining purity (221, 39.1%), or belief in divine healing (172, 30.4%). Some requesters also volunteered evidence of the sincerity of their beliefs including examples of their religious practices (116, 20.5%), other practices (66, 11.7%), and emotional states (32, 5.7%). One hundred fifty-two applications (26.9%) contained text copied without attribution, primarily from sample religious exemption request letters available on the Internet.Conclusions: Most requesters focused on the use of fetal cell lines in the development or manufacturing of the vaccines as the justification for their request. The development of vaccines that are not reliant on fetal cell lines may increase vaccination rates. Understanding reasons for religious exemption requests may inform vaccine education and vaccination policies.

Rosamond Rhodes has written a welcome, clear, and expansive yet precise book that challenges the hegemonic influence of principlism in biomedical ethics and presents a viable alternative. At the outset, Rhodes critiques the idea of common morality underpinning the four principles from Tom Beauchamp and James Childress's Principles of Biomedical Ethics and ten rules from Bernard Gert, Charles Culver, and K. Danner Clouser in Bioethics: A Systematic Approach. Rhodes not only argues for why medicine is unlike everyday practices and requires a unique ethics but also offers a positive program to meet medicine's "uncommon morality."This "uncommon morality" gives rise to sixteen duties that guide medical practice. Each...

In ‘Ethics of sharing medical knowledge with the community: is the physician responsible for medical outreach during a pandemic?’ Strous and Karni note that the revised physician’s pledge in the World Medical Association Declaration of Geneva obligates individual physicians to share medical knowledge, which they interpret to mean a requirement to share knowledge publicly and through outreach. In the context of the COVID-19 pandemic, Strous and Karni defend a form of medical paternalism insofar as the individual physician must reach out to communities who may not want, or know to seek out, medical advice, for reasons of public health and health equity. Strous and Karni offer a novel defence of why physicians ought to intervene even in insular communities, and they offer suggestions for how this could be done in culturally sensitive ways. Yet their view rests on an unfounded interpretation of the Geneva Declaration language. More problematically, their paper confuses shared and collective responsibility, misattributing the scope of individual physician obligations in potentially harmful ways. In response, this reply delineates between shared and collective responsibility, and suggests that to defend the obligation of medical outreach Strous and Karni propose, it is better conceptualised as a collective responsibility of the medical profession, rather than a shared responsibility of individual physicians. This interpretation rejects paternalism on the part of individual providers in favour of a more sensitive and collaborative practice of knowledge sharing between physicians and communities, and in the service of collective responsibility.