In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both (...) distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19 . (shrink)

The COVID-19 pandemic has led to intense conversations about ventilator allocation and reallocation during a crisis standard of care. Multiple voices in the media and multiple state guidelines mention reallocation as a possibility. Drawing upon a range of neuroscientific, phenomenological, ethical, and sociopolitical considerations, the authors argue that taking away someone’s personal ventilator is a direct assault on their bodily and social integrity. They conclude that personal ventilators should not be part of reallocation pools and that triage protocols should be (...) immediately clarified to explicitly state that personal ventilators will be protected in all cases. (shrink)

This collection addresses whether ethicists, like authorities in other fields, can speak as experts in their subject matter. Though ethics consultation is a growing practice in medical contexts, there remain difficult questions about the role of ethicists in professional decision-making. Contributors examine the nature and plausibility of moral expertise, the relationship between character and expertise, the nature and limits of moral authority, how one might become a moral expert, and the trustworthiness of moral testimony. This volume engages with the growing (...) literature in these debates and offers new perspectives from both academics and practitioners. The readings will be of particular interest to bioethicists, clinicians, ethics committees, and students of social epistemology. These new essays promise to advance discussions in the professionalization and accreditation of ethics consultation. (shrink)

Ableist attitudes and structures regarding disability are increasingly recognized across all sectors of healthcare delivery. After Dobbs, novel questions arose in the USA concerning how to protect reproductive autonomy while avoiding discrimination against and devaluation of disabled persons. As a case study, we examine the Louisiana’s Department of Public Health August 1st Emergency Declaration, “List of Conditions that shall deem an Unborn Child ‘Medically Futile.’” We raise a number of medical, ethical, and public health concerns that lead us to argue (...) the declaration should be rescinded. The ethically objectionable declaration provides valuable lessons concerning how to uphold both reproductive and disability justice in a post-Dobbs landscape. [Currently published online first. Forthcoming in Volume 53, Issue 1 (Jan-Feb), 2023, of The Hastings Center Report]. (shrink)

Background: Caregivers and administrators in long-term facilities have fragile moral work in caring for residents with dementia. Residents are susceptible to barriers and vulnerabilities associated with the most intimate aspects of their lives, including how they express themselves sexually. The conditions for sexual agency are directly affected by caregivers’ perceptions and attitudes, as well as facility policies. Objective: This article aims to clarify how to approach capacity determinations as it relates to sexual activity, propose how to theorize about patient autonomy (...) in this context, and suggest some considerations for finding an ethically responsible and practically feasible way to respect the sexual rights of this population. Research Design: The focus is on residents with early to moderate dementia in states of daily dependency on professional caregivers. The article critically examines existing empirical research on sexuality among persons with dementia, caregivers’ attitudes, and institutional roadblocks to enabling residents’ sexuality. A relational lens and insights from disability studies are used in the philosophical analysis. Participants and Research Context: No research participants were part of this analysis. Ethical Considerations: This article offers a conceptual analysis and normative framework only. Findings: The analysis highlights the delicate balance that capacity assessments for sexual activity have to strike; while caregivers should protect those who cannot give adequate consent, the denial of sexuality among residents can cause deep, long-ranging harms. Sexual agency features into an ongoing sense of self for many individuals with dementia, and the imposition of inappropriate standards and expectations for sexual autonomy can lead to unwarranted obstacles to sexual activity. Discussion: Recommendations include developing clear and inclusive institutional policies and practices of care, providing education for caregivers on how to discuss and document residents’ sexual preferences over time, and taking advantage of ethics consultation services. Conclusion: This analysis establishes the need for more research and discussion on this sensitive topic. Future research should investigate the specific responsibilities of caregivers in furthering the sexual interests of residents, how exactly to modify existing capacity instruments, and how best to support historically marginalized patients in their sexual identities. (shrink)

Robert Veatch’s The Foundations of Justice: Why the Retarded and the Rest of Us Have Claims to Equality delves into deep questions of justice through the case of a child with disabilities. I describe what is basically right about this vision, as well as what is problematic from the standpoint of contemporary disability bioethics. From there, I dive into the notion of vulnerability that is at play in his work. He describes disability as necessarily a condition of weakness, lesser-than existence, (...) and neediness. When disability is viewed in this way as an inherently vulnerable state of being, the essential sociopolitical dimensions of disability receive inadequate attention, which, in turn, makes it impossible to identify injustices correctly. I connect these points to concrete challenges faced by disability communities during the COVID-19 pandemic, which have raised profound questions about the just use of scarce critical care resources. Any case drawn from the pandemic is a very different kind of case than that of the child in Veatch’s book, but a commonality is the question of who should get what limited resources when needs and urgency vary. (shrink)

In an effort to address healthcare disparities in lesbian, gay, bisexual, transgender, and queer populations, many hospitals and clinics institute diversity training meant to increase providers’ awareness of and sensitivity to this patient population. Despite these efforts, many healthcare spaces remain inhospitable to LGBTQ patients and their loved ones. Even in the absence of overt forms of discrimination, LGBTQ patients report feeling anxious, unwelcome, ashamed, and distrustful in healthcare encounters. We argue that these negative experiences are produced by a variety (...) of subtle, ostensibly insignificant features of healthcare spaces and interpersonal interactions called microaggressions. Healthcare spaces and providers often convey heteronormative microaggressions, which communicate to LGBTQ—and, we suggest, intersex and asexual —people that their identities, experiences, and relationships are abnormal, pathological, unexpected, unwelcome, or shameful. We identify heteronormative microaggressions common to healthcare settings and specify how they negatively impact LGBTQIA patients. We argue that standard diversity training cannot sufficiently address heteronormative microaggressions. Despite these challenges, healthcare institutions and providers must take responsibility for heteronormative microaggressions and take steps to reduce their frequency and mitigate their effects on LGBTQIA care. We conclude by offering strategies for problem-solving at the level of medical education, institutional culture and policy, and individual awareness. (shrink)

The covert administration of medication occurs with incapacitated patients without their knowledge, involving some form of deliberate deception in disguising or hiding the medication. Covert medication in food is a relatively common practice globally, including in institutional and homecare contexts. Until recently, it has received little attention in the bioethics literature, and there are few laws or rules governing the practice. In this paper, we discuss significant, but often overlooked, ethical issues related to covert medication in food. We emphasise the (...) variety of ways in which eating has ethical importance, highlighting what is at risk if covert administration of medication in food is discovered. For example, losing trust in feeders and food due to covert medication may risk important opportunities for identity maintenance in contexts where identity is already unstable. Since therapeutic relationships may be jeopardised by a patient’s discovery that caregivers had secretly put medications in their food, this practice can result in an ongoing deception loop. While there may be circumstances in which covert medication is ethically justified, given a lack of suitable alternatives, we argue that in any particular case this practice should be continually re-evaluated in light of the building moral costs to the relational agent over time. (shrink)

The question of whether a patient has insight is among the first to be considered in psychiatric contexts. There are several competing conceptions of clinical insight, which broadly refers to a patient’s awareness of their mental illness. When a patient is described as lacking insight, there are significant implications for patient care and to what extent the patient is trusted as a knower. Insight is currently viewed as a multidimensional and continuous construct, but competing conceptions of insight still lack consensus (...) on the specifics. Studies also give contradictory evidence regarding the frequency and consequences of poor insight. A number of crucial questions remain unanswered. After outlining some of the key theoretical disagreements about what insight means, I highlight ethical issues that have not received much attention in the literature. Given the conceptual ambiguities and the absence of standardised bedside tools, there are significant ethical concerns about insight assessments. I highlight two main ethical concerns, specifically that these assessments risk: marginalising patients by setting unattainable ideals for self-knowledge and minimising the patient’s own perspective on their mental health. I close with recommendations for documenting and responding to concerns about poor insight, so patients who are vulnerable to losing epistemic trust are better supported in their therapeutic relationships. (shrink)

At its core, nonideal theory is an attempt not only to address issues of justice, but it also provides us a lens through which we can articulate our limitations as knowers and reasoners, the ways in which we are relational in our autonomy needs, and the ways in which we are deeply dependent upon institutions and social supports for our agency and identities. Bringing this lens into bioethics means shifting our orientation in our scholarship and our practice. This shift will (...) have implications in how bioethical evaluations are taken up and played out in policies, institutional structures that inform the clinical encounter, and avenues for protection and redress for marginalized and vulnerable populations. It will also allow theorists and researchers to interrogate the status quo, revealing how many standard policies and practices are embedded in social and institutional arrangements that privilege the few or are built on exclusionary norms. The path forward, and the aim of this volume, is to extend the scholarship of nonideal approaches to bioethics. The volume is divided into two main parts. The first is focused on philosophically unpacking nonideal theory as an approach in bioethics. The second offers applications of nonideal theory in environmental ethics, healthcare ethics, public heath ethics, and genetic ethics. Our collective aim is to expand what has been considered nonideal bioethics. The history of nonideal theory has as its point of reference a turn away from Rawlsian justice, but the future of nonideal theory is ripe with possibilities. (shrink)

Baby A1 was born prematurely with severe encephalopathy, injured brainstem, and a potentially injured spinal cord. He had no response to pain or other external stimuli. The neonatal team unanimousl...

How can social institutions complicate and worsen vulnerabilities of particular individuals or groups? We begin by explicating how certain diagnoses within mental health and medicine operate as interactive kinds of labels and how such labels can create institutional barriers that hinder one's capacity to achieve wellbeing. Interactive-kind modeling is a conceptual tool that elucidates the ways in which labeling can signal to others how the labeled person ought to be treated, how such labeling comes about and is perceived, and how (...) it compounds vulnerabilities. We argue that this shift in standpoint helps us recognize and mitigate compounded vulnerabilities. (shrink)

We argue that we have obligations to future people that are similar in kind to obligations we have to current people. Modifying Michael Bratman’s account, we argue that as planning agents we must plan for the future to act practically in the present. Because our autonomy and selfhood are relational by nature, those plans will involve building affiliative bonds and caring for others. We conclude by grounding responsibility to future others by the way we plan through our social institutions. Our (...) account fills out the story of responsibility to future generations by referring only to ourselves, our practical identities, and practical reason. (shrink)

ABSTRACT:Robert Veatch argues that physician oaths should not be valued as substantive moral commitments, transformational rituals, or symbolic acts. Further, he insists that oath recitation in medical schools is immoral. I respond to Veatch's criticisms and argue that, with alterations to their content and practice, oaths can have value for articulating moral commitments and building a sense of moral community within the profession. I break down Veatch's multitude of objections to oaths over his career, and I suggest how medical schools (...) can avoid the pitfalls identified by Veatch. A promising and innovative path forward is to integrate a commitment to diversity, equity, and inclusion—though with an understanding that a few lines in an oath are far from sufficient for institutional culture, faculty accountability, or students' education. (shrink)

This book offers new essays exploring concepts and applications of nonideal theory in bioethics. Nonideal theory refers to an analytic approach to moral and political philosophy (especially in relation to justice), according to which we should not assume that there will be perfect compliance with principles, that there will be favorable circumstances for just institutions and right action, or that reasoners are capable of being impartial. Nonideal theory takes the world as it actually is, in all of its imperfections. Bioethicists (...) have called for greater attention to how nonideal theory can serve as a guide in the messy realities they face daily. Although many bioethicists implicitly assume nonideal theory in their work, there is the need for more explicit engagement with this theoretical outlook. A nonideal approach to bioethics would start by examining the sociopolitical realities of healthcare and the embeddedness of moral actors in those realities. How are bioethicists to navigate systemic injustices when completing research, giving guidance for patient care, and contributing to medical and public health policies? When there are no good options and when moral agents are enmeshed in their sociopolitical viewpoints, how should moral theorizing proceed? What do bioethical issues and principles look like from the perspective of historically marginalized persons? These are just a few of the questions that motivate nonideal theory within bioethics. This book begins in Part I with an overview of the foundational tenets of nonideal theory, what nonideal theory can offer bioethics, and why it may be preferable to ideal theory in addressing moral dilemmas in the clinic and beyond. In Part II, authors discuss applications of nonideal theory in many areas of bioethics, including reflections on environmental harms, racism and minority health, healthcare injustices during incarceration and detention, and other vulnerabilities experienced by patients from clinical and public health perspectives. The chapters within each section demonstrate the breadth in scope that nonideal theory encompasses, bringing together diverse theorists and approaches into one collection. (shrink)

Clinical and ethical reasoning often follows the grooves, the forks, the paths of decision trees. Health-care professionals and clinical ethicists can come to rely on them, especially in intricate cases with complex problems that need to be broken down into analyzable steps. Despite their usefulness, decision trees can lead everyone astray if they are rooted in outdated medicine. In his 2015 book, Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness, Joseph Fins illuminates the errors of common (...) medical and ethical understandings of disorders of consciousness, especially vegetative states and minimally conscious states.1 Fins weaves together over 50 in-depth interviews with patients... (shrink)