What Does Disability Justice Require of Antimicrobial Stewardship?

This commentary on a case argues that antimicrobial stewardship requires an intersectional disability justice approach if it is to be equitable, particularly for multiply marginalized patients with disabilities residing in nursing homes, who are more susceptible to antibiotic under- and overtreatment. Disability justice concepts emphasize resistance to structural and capitalist roots of ableism and prioritize leadership by disabled persons. A disability justice perspective on antimicrobial stewardship means prioritizing clarification of presumptive diagnoses of infection in vulnerable patients, clinician education led by disabled persons, and data collection.

Reframing Mental Health Ethics.

Mental health ethics has been classically focused on ethical concepts and problems in clinical mental health spaces. Psychiatric and psychotherapeutic ethics are main threads of analysis in this subfield of bioethics. However, ethical issues emerge around mental health and illness both within and beyond clinical settings. In particular, ethical quandaries arise in employment, education, family caregiving, and incarceration of people with mental health conditions outside of the clinical setting. Likewise, ethics are an important consideration within alternative care systems where mentally ill people seek support beyond biomedicine, psychotherapy, and case management. In this article, we argue that our understanding of "mental health ethics" should expand to be more inclusive of value questions and conflicts that arise in all areas of the lives of people with mental health conditions, rather than focusing more narrowly on how clinical practitioners and researchers should best respond to ethical quandaries in the delivery of mental healthcare. Community mental health is an ideal space in which to think about such ethical issues, as scholars and practitioners in the field strive to meet not only medical needs but the broader social needs of people with mental health conditions. We begin by providing an overview of psychiatric and psychotherapeutic ethics, and then describe broader applications of ethics in the lives of people experiencing mental illness. We encourage community mental health practitioners and researchers to reconceptualize disciplinary boundaries to consider the vast scope of ethical issues related to mental health in and out of the clinic.

Smuggled Doughnuts and Forbidden Fried Chicken: Addressing Tensions around Family and Food Restrictions in Hospitals.

It is a common practice for family members to bring food to hospitalized loved ones. However, in some cases, this food contravenes a patient's dietary plan. Such situations can create significant tension and distrust between health care professionals and families and may lead the former to doubt a family's willingness or ability to support patient recovery. This case-study essay offers an ethical analysis of these situations. We draw on Hilde Lindemann's work to argue that providing food to family members is an important way that families discharge their moral functions of caring for their members and holding them in their identities. When family members are hospitalized, other means of performing these functions are limited. Acknowledging the ethical importance of feeding family members alongside the medical need for dietary restrictions, we offer strategies for creative problem-solving that center diet as a subject for shared decision-making and regular, ongoing communication among health care professionals, patients, and families.

Louisiana's "Medically Futile" Unborn Child List: Ethical Lessons at the Post-Dobbs Intersection of Reproductive and Disability Justice.

Ableist attitudes and structures are increasingly recognized across all sectors of health care delivery. After Dobbs, novel questions arose in the United States concerning how to protect reproductive autonomy while avoiding discrimination against and devaluation of disabled persons. In this essay, we examine the Louisiana Department of Health's emergency declaration, "List of Conditions That Shall Deem an Unborn Child 'Medically Futile,'" issued August 1, 2022. We raise a number of medical, ethical, and public health concerns that lead us to argue that the declaration should be rescinded. Analysis of this ethically objectionable declaration provides valuable lessons about how to uphold both reproductive and disability justice in a post-Dobbs landscape.

An Open Discussion of the Impact of OpenNotes on Clinical Ethics: A Justification for Harm-Based Exclusions from Clinical Ethics Documentation.

The OpenNotes (ON) mandate in the 21st Century Cures Act requires that patients or their legally authorized representatives be able to access their medical information in their electronic medical record (EMR) in real time. Ethics notes fall under the domain of this policy. We argue that ethics notes are unique from other clinical documentation in a number of ways: they lack best-practice guidelines, are written in the context of common misconceptions surrounding the purpose of ethics consultation, and often answer questions of a different nature than other documentation. Thus, we believe the clinical ethics community would benefit from clarification on when the withholding of ethics notes is justified. We provide recommendations for excluding information from ethics documentation based on the likelihood and magnitude of harm that may occur with particular disclosures and suggest approaches to decrease the potential harms that may occur. We define and explain six types of reasons to exclude information from ethics notes based on significant harms that are not addressed in the ON policy: (1) harmful revelations from a protected chart note; (2) negative emotional effects on patients or families; (3) the purpose of the consultation is undermined by harmful consequences; (4) avoidable negative impact on interpersonal dynamics; (5) inappropriate labeling or disclosure of medical, social, or financial information; and (6) inclusion of biasing or otherwise unfair information. We also suggest approaches to mitigate harm when excluding, including, reframing, or delaying release of information that is perceived to be relevant to an ethics case. Overall, we hope our analysis and recommendations will initiate a much-needed discussion about the impact of the ON mandate on clinical ethics documentation.

Reimagining Commitments to Patients and the Public in Professional Oaths.

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.

Disability bioethics and the commitment to equality.

Robert Veatch's The Foundations of Justice: Why the Retarded and the Rest of Us Have Claims to Equality (1986) 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.

Vulnerability in practice: Peeling back the layers, avoiding triggers, and preventing cascading effects.

The concept of vulnerability is widely used in bioethics, particularly in research ethics and public health ethics. The traditional approach construes vulnerability as inherent in individuals or the groups to which they belong and views vulnerability as requiring special protections. Florencia Luna and other bioethicists continue to challenge traditional ways of conceptualizing and applying the term. Luna began proposing a layered approach to this concept and recently extended this proposal to offer two new concepts to analyze the concept of vulnerability, namely understanding external conditions that trigger vulnerability and layers of vulnerability with cascading effects. Luna's conception of vulnerability is useful, which we demonstrate by applying her layered view and the new analyses in multiple contexts. We begin by outlining Luna's view and we use vignettes from healthcare involving transgender patients, the care of patients in psychiatric contexts, and research involving prisoners to illustrate how each part of Luna's concept elucidates important moral issues.

Against Personal Ventilator Reallocation.

The COVID-19 (Coronavirus disease of 2019) 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.

Disability Rights as a Necessary Framework for Crisis Standards of Care and the Future of Health Care.

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.

Overcoming Obstacles to Shared Mental Health Decision Making.

Shared decision making (SDM) is difficult to implement in mental health practice, but it remains an ethical ideal for motivating therapeutic capacity in patient-clinician relationships; this discrepancy warrants attention from clinical and ethical perspectives. This article explores what some clinicians see as obstacles to even attempting SDM with patients with psychiatric disabilities. In particular, this article identifies 4 such obstacles: a patient's lack of decision-making capacity, a patient's poor insight, a health care professional's therapeutic pessimism or personal dislike, and a patient's or health care professional's conflicting recovery orientations or goals of care. This article argues that each obstacle could be overcome in many cases and that health care professionals, patients, and their caregivers should remain dedicated to attempting SDM in mental health practice.

Covert administration of medication in food: a worthwhile moral gamble?

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.

Covert Consciousness and Covert Ethics.

Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness (2015) by Joseph J. Fins offers rich narratives of families and patients who experience disorders of consciousness in flawed health-care systems that are not clinically, structurally, financially, or ethically prepared to respond to the inherent complexities of these conditions. In 2018, only a few years after the publication of this book, the medical guidelines for these disorders officially changed with key publications in Neurology. Fins has called on bioethicists to respond to these significant developments, and this paper serves as a response to that call. This article offers a critical analysis of a couple of Fins's arguments. But it also emphasizes the importance of these developments and Fins's work for thinking through bedside and organizational ethics issues that arise in advocating for patients with disorders of consciousness.

Clarifying a Clinical Ethics Service's Value, the Visible and the Hidden.

Our aim in this article is to define the difficulties that clinical ethics services encounter when they are asked to demonstrate the value a clinical ethics service (CES) could and should have for an institution and those it serves. The topic emerged out of numerous related presentations at the Un-Conference hosted by the Cleveland Clinic in August 2018 that identified challenges of articulating the value of clinical ethics work for hospital administrators. After a review these talks, it was apparent that the field of clinical ethics may be at a crisis of sorts due to increased pressure to provide explicit measures to healthcare institutions to concretely demonstrate that CESs make a valuable difference in healthcare delivery. In this article we grapple with how to satisfy the need for demonstrable value in a field in which metrics alone may not capture the scope of clinical ethics practice. We suggest that capturing the value of a CES has been difficult because the benefits of ethics consultation may be overt or attributable to the CES, but are often hidden due to the systems-level and process-oriented nature of clinical ethics work. Part of the difficulty in demonstrating the value of CESs is capturing and conveying all of the ways the integration of a CES throughout an institution positively affects patients, families, visitors, healthcare professionals, administrators, and the institution itself. Our aim is to (1) elucidate the multifaceted value added by a CES, including value that tends to be hidden and (2) suggest how to demonstrate value to others in a way that is not simplistic or reductionistic.

Homeless, Ill, and Psychiatrically Complex: The Grueling Carousel of Cassandra Lee.

Ask any clinical ethics consultant, and they can tell you about their transformative cases. Some stick with us because all roads led nowhere. Cassandra Lee had a history of pulling out lines and tubes and a distaste of warming blankets. Her admission marked her thirtieth over the past year. Many of the challenges facing the hospital caring for her were not unique: significant psychiatric issues, prolonged nonadherence to medical advice, and end-of-life decision-making combined to create an ethically dense and vexing situation. Ms. Lee, like so many patients, was suffering because of system failures.