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)

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)

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)

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)

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)

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)

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)

Many of us believe that, at minimum, we have a duty not to shorten or unduly burden the lives of future people. This perceived duty could lead to ethical concerns about leaving the earth in environmental ruin, pursuing certain biotechnologies, or playing with the human genome. It is both tempting and intuitive to understand this duty as a duty not to harm future generations. This line of thought leads to a philosophical puzzle articulated by Derek Parfit. Despite many attempts to (...) resolve this puzzle, Parfit’s criticisms remain formidable.We aim to articulate an account of duties to future generations that has the flexibility to move from the abstract analytic framework Parfit works within to respond to questions .. (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)

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...