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)

Although clinical ethics consultation is a high-stakes endeavor with an increasing prominence in health care systems, progress in developing standards for quality is challenging. In this article, we describe the results of a pilot project utilizing portfolios as an evaluation tool. We found that this approach is feasible and resulted in a reasonably wide distribution of scores among the 23 submitted portfolios that we evaluated. We discuss limitations and implications of these results, and suggest that this is a significant step (...) on the pathway to an eventual certification process for clinical ethics consultants. (shrink)

The application of neuroimaging technology to the study of the injured brain has transformed how neuroscientists understand disorders of consciousness, such as the vegetative and minimally conscious states, and deepened our understanding of mechanisms of recovery. This scientific progress, and its potential clinical translation, provides an opportunity for ethical reflection. It was against this scientific backdrop that we convened a conference of leading investigators in neuroimaging, disorders of consciousness and neuroethics. Our goal was to develop an ethical frame to move (...) these investigative techniques into mature clinical tools. This paper presents the recommendations and analysis of a Working Meeting on Ethics, Neuroimaging and Limited States of Consciousness held at Stanford University during June 2007. It represents an interdisciplinary approach to the challenges posed by the emerging use of neuroimaging technologies to describe and characterize disorders of consciousness. (shrink)

: This paper presents a method of moral problem solving in clinical practice that is inspired by the philosophy of John Dewey. This method, called "clinical pragmatism," integrates clinical and ethical decision making. Clinical pragmatism focuses on the interpersonal processes of assessment and consensus formation as well as the ethical analysis of relevant moral considerations. The steps in this method are delineated and then illustrated through a detailed case study. The implications of clinical pragmatism for the use of principles in (...) moral problem solving are discussed. (shrink)

Vulnerability is an important criterion to assess the ethical justification of the inclusion of participants in research trials. Currently, vulnerability is often understood as an attribute inherent to a participant by nature of a diagnosed condition. Accordingly, a common ethical concern relates to the participant’s decisionmaking capacity and ability to provide free and informed consent. We propose an expanded view of vulnerability that moves beyond a focus on consent and the intrinsic attributes of participants. We offer specific suggestions for how (...) relational aspects and the dynamic features of vulnerability could be more fully captured in current discussions and research practices. (shrink)

Advancements in novel neurotechnologies, such as brain computer interfaces and neuromodulatory devices such as deep brain stimulators, will have profound implications for society and human rights. While these technologies are improving the diagnosis and treatment of mental and neurological diseases, they can also alter individual agency and estrange those using neurotechnologies from their sense of self, challenging basic notions of what it means to be human. As an international coalition of interdisciplinary scholars and practitioners, we examine these challenges and make (...) recommendations to mitigate negative consequences that could arise from the unregulated development or application of novel neurotechnologies. We explore potential ethical challenges in four key areas: identity and agency, privacy, bias, and enhancement. To address them, we propose democratic and inclusive summits to establish globally-coordinated ethical and societal guidelines for neurotechnology development and application, new measures, including “Neurorights,” for data privacy, security, and consent to empower neurotechnology users’ control over their data, new methods of identifying and preventing bias, and the adoption of public guidelines for safe and equitable distribution of neurotechnological devices. (shrink)

: This response to Lynn Jansen's critique of clinical pragmatism concentrates on two themes: (1) contrasting approaches to moral epistemology and (2) the connection between theory and practice in clinical ethics. Particular attention is paid to the status of principles and the role of consensus, with some closing speculations on how Dewey might view the current state of bioethics.

Autobiographical essays can be an indulgence. Often self-congratulatory and low on self-reflection, they seldom serve a purpose other than to stoke nostalgia. So when given this opportunity to write about my life in medicine and bioethics, I decided I would take stock, and not simply celebrate whatever accomplishments I might have had. Rather, I would use this opportunity to look for themes that linked the decades together. My hope was that the process might assemble the mosaic that has been my (...) life into a discernible pattern that could only be seen from a distance, and from the vantage of historical reflection. Maybe, if I was lucky, past would be prologue, and I would learn something that might help me script the... (shrink)

Without exaggeration, it could be said that we are entering a golden age of neuroscience. Informed by recent developments in neuroimaging that allow us to peer into the working brain at both a structural and functional level, neuroscientists are beginning to untangle mechanisms of recovery after brain injury and grapple with age-old questions about brain and mind and their correlates neural mechanisms and consciousness. Neuroimaging, coupled with new diagnostic categories and assessment scales are helping us develop a new diagnostic nosology (...) about disorders of consciousness which will likely improve prognostication and suggest therapeutic advances. Historically such diagnostic refinement has yield therapeutic advances in medicine and there is no reason to doubt that this will be the case for disorders of consciousness, perhaps bringing relief to a marginalized population now on the periphery of the therapeutic agenda. In spite of this promise, the translation of research findings into the clinical context will be difficult. As we move from descriptive categories about disorders of consciousness, like the vegetative or minimally conscious states, to ones further specified by integrating behavioral and neuroimaging findings, humility not hubris should be the virtue that guides the ethical conduct of research and practice. (shrink)

Let’s face it, the humanities are in trouble. Last year, in The Chronicle of Higher Education, Thomas H. Benton warned prospective graduate students to avoid doctoral studies in the humanities. His rationale: a job market down 40%, the improbability of tenure, the more certain prospect of life as an adjunct, and eventual outright exile from one’s chosen field. Benton, the pen name of William Pannapacker, an associate professor of English at Hope College in Holland, Michigan, pulled no punches. His piece (...) was entitled, “Graduate School in the Humanities: Just Don’t Go.”. (shrink)

Informed consent is a perennial topic in bioethics. It has given the field a place in clinical practice and the law and is often the starting point for introductory instruction in medical ethics. One would think that nearly everything has been said and done on this well-worn topic.

In response to national trends calling for increasing accountability and an emerging dialogue within bioethics, we describe an effort to credential clinical ethicists at a major academic medical center. This effort is placed within the historical context of prior calls for credentialing and certification and efforts currently underway within organized bioethics to engage this issue. The specific details, and conceptual rationale, behind the New York-Presbyterian Hospital’s graduated credentialing plan are shared as is their evolution and ratification within the context of (...) institutional policy. While other programs will design their credentialing schema consistent with their local context and demographics, the description of one such effort is offered to be instructive to others who want to bring additional standardization to the assessment of the readiness and credentials of those who will engage in the practice of clinical ethics case consultation. (shrink)

As improvements in neuroscience have enabled a better understanding of disorders of consciousness as well as methods to treat them, a hurdle that has become all too prevalent is the denial of coverage for treatment and rehabilitation services. In 2011, a settlement emerged from a Vermont District Court case, Jimmo v. Sebelius, which was brought to stop the use of an “improvement standard” that required tangible progress over an identifiable period of time for Medicare coverage of services. While the use (...) of this standard can have deleterious effects on those with many chronic conditions, it is especially burdensome for those in the minimally conscious state, where improvements are unpredictable and often not manifested through repeatable overt behaviors. Though the focus of this paper is on the challenges of brain injury and the minimally conscious state, which an estimated 100,000 to 200,000 individuals suffer from in the United States, the post-Jimmo arguments presented can and should have a broad impact as envisioned by the plaintiffs who brought the case on behalf of multiple advocacy groups representing patients with a range of chronic care conditions. (shrink)

A 47-year-old woman with a history of anxiety disorder is admitted to the hospital for shortness of breath. On the third day of hospitalization, she asks her physician for a copy of all documents pertaining to her care. What expectation should she have for full disclosure? Are there limits on her access to her medical records and do her physician's concerns about professional privilege matter?The virtues of transparency in medicine have been well described. As proponents of transparency, we favor patient (...) access to their medical records, but we are increasingly troubled by the ease and extent of disclosure in current practice as technology advances and... (shrink)

In The Healer's Power, Howard Brody placed the concept of power at the heart of medicine's moral discourse. Struck by the absence of “power” in the prevailing vocabulary of medical ethics, yet aware of peripheral allusions to power in the writings of some medical ethicists, he intuited the importance of power from the silence surrounding it. He formulated the problem of the healer's power and its responsible use as “the central ethical problem in medicine.” Through the prism of power he (...) refracted a wide range of ethical problems, from informed consent to truth-telling, from confidentiality to futility, from the physician's fantasies to the physician's virtues. At times this prism shed new light on old problems, enabling us to see from an unexpected angle the elements of which the problem was composed. At other times it exposed issues of ethical significance that had been neglected in the bioethics literature. (shrink)

Volume 20, Issue 2, February 2020, Page 51-53.

While the medical ethics literature has well explored the harm to patients, families, and the integrity of the profession in failing to disclose medical errors once they occur, less often addressed are the moral and professional obligations to take all available steps to prevent errors and harm in the first instance. As an expanding body of scholarship further elucidates the causes of medical error, including the considerable extent to which medical errors, particularly in diagnostics, may be attributable to cognitive sources, (...) insufficient progress in systematically evaluating and implementing suggested strategies for improving critical thinking skills and medical judgment is of mounting concern. Continued failure to address pervasive thinking errors in medical decisionmaking imperils patient safety and professionalism, as well as beneficence and nonmaleficence, fairness and justice. We maintain that self-reflective and metacognitive refinement of critical thinking should not be construed as optional but rather should be considered an integral part of medical education, a codified tenet of professionalism, and by extension, a moral and professional duty. (shrink)

I would like to share some reflections on how bioethics fosters dialogue between the sciences and humanities by talking a bit about my work as a physician-ethicist collaborating with neuroscientists studying severe brain injury and mechanisms of recovery. If I am successful in this Pilgrim's Progress, I hope I will convince you that the injured brain can teach us much about ourselves. It is not something I was prepared to believe as a medical student, when I was more certain of (...) things than I am now. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 38-39, October 2012.

The restructuring of the healthcare marketplace has exerted pressure directly and indirectly on clinical ethics programs. The fiscal orientation and emphasis on efficiency, outcome measures, and cost control have made it increasingly difficult to communicate arguments in support of the existence or growth of ethics programs. In the current marketplace, arguments that rely on the claim that ethics programs protect patient rights or assist in the professional formation of practitioners often result in minimal levels of funding and preclude program growth. (...) Where ethics programs could once sustain themselves on goodwill alone and values arguments in an expanding healthcare market they are now encountering—at least by anecdotal reports—cutbacks and even elimination. To respond to these challenges, we offer an economic model that can be used to demonstrate the “value” of an institutionally based ethics program. (shrink)

There is a palpable malaise in American medicine as clinical practice veers off its moorings, swept along by a new commercialism that is displacing medical professionalism and its attendant moral obligations. Although the sociology of this phenomenon is complex and multifactorial, I argue that this move toward medical commercialism was accelerated by the abortive efforts of the Clinton Administration's Health Security Act. Through an analysis of performative speech I show that, although the Clinton plan drew on many strands of speech (...) about healthcare, it favored the discourse of health policy and health economics over that of clinical practice and professionalism. Though the Clinton plan failed, this new vocabulary of health economics has led us to imagine a new descriptive framework, which has commodified healthcare and commercialized the clinic. (shrink)

It is generally agreed that physicians should not provide futile interventions, for the obvious reason that an intervention without utility causes harm without benefit. However, despite efforts to standardize a definition, there is a lack of universal consensus as to what constitutes “futility.” Two recent policy statements object to the terminology of futility based on the lack of a universal definition. Schneiderman, Jecker, and Jonsen object to the proposed alternative terminology of “inappropriate.” These differing opinions about the most apt terminology (...) raise the question of whether definitions are helpful or counterproductive in addressing disputes that... (shrink)