In lieu of an abstract, here is a brief excerpt of the content:Minding Brain Injury, Consciousness, and Ethics: Discourse and DeliberationsJoseph J. Fins (bio) and James Giordano (bio)The annual John Collins Harvey Lecture at the Georgetown University’s Pellegrino Center for Clinical Bioethics is a forum for addressing contemporary topics at the intersection of medicine and bioethics. This year, in marking the decadal anniversary of the launch of the Brain Research through Advancing Innovative Neurotechnology (BRAIN) Initiative, the Harvey Lecture provided (...) an interactive discussion with renowned clinician, researcher, scholar, and author, Joseph J. Fins, MD—who is the E. William Davis, Jr., MD Professor of Medical Ethics, Chief of the Division of Medical Ethics, and a Professor of Medicine at Weill Cornell Medical College—conducted by James Giordano, PhD, MPhil—who is a Professor of Neurology and Biochemistry, and Chief of the Pellegrino Center’s Neuroethics Studies Program at the Georgetown University Medical Center. The discourse focused upon the topic of covert consciousness, and the ways in which current and developing brain science technologies, together with revised practices of medicine, in general, may afford new opportunities in patient care, but may also give rise to issues, questions, challenges, and opportunities for neuroethics.Prof. James GIORDANO:Prof. Fins, your most recent book, Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness (Fins 2015), addresses your ongoing work to employ current and emerging neurological approaches to reveal conscious functions in patients with profound brain injury and disease. To be sure, the destination—if you will—is to talk about covert consciousness. But in commencing this discussion, I’d like to propose a route, which traces your professional journey to this point in your career, and how it led you on your search to reveal consciousness in those patients who lack expressive capability. You went into palliative care first, and that brought you to where you are today. [End Page 227]Prof. Joseph J. FINS:First, let me thank you and the Pellegrino Center for the honor of giving the John Harvey Collins Lecture in such an interactive manner. The forefront of neurological care—and the neuroethical issues and methods focal to such practice—wasn’t what I initially intended to do professionally, but I think that therein is a good lesson for young people’s career aspirations. Simply put, one doesn’t always know where they’ll end up at the beginning of the journey, and as Kierkegaard said, life is lived forward, but is understood backwards (Kierkegaard 1843).In the nineties and the early 2000s, I was trying to help improve the quality of care of people at the end of life, and I wrote a book, entitled The Palliative Ethic of Care: Clinical Wisdom at Life’s End (Fins 2006), in which I addressed notions of phronesis—practical wisdom—in integrating theory and practice toward improving how people die. I became interested in the Quinlan case (Quinlan 1976), and the right to die, and around the same time, I ran into a colleague of mine at Cornell: Dr. Nicholas D. Schiff. Dr. Schiff is a neurologist, who was a protégé of Fred Plum, who was the originator of the concept of the vegetative state with Bryan Jennett, back in 1972. Fred was both of our teachers here at Cornell. Niko (Dr. Schiff) was interested in patients with disorders of consciousness, and was beginning to envision doing work—that ultimately, we did—using deep brain stimulation (DBS) to try to treat patients in the minimally conscious state, a category that was subsequently codified in 2002.I realized that a whole population of people—with these disorders of consciousness—had been somewhat marginalized, and their neglect essentially devolves back to the considerations of the right to die. The right to die was established in the Quinlan case because Judge Hughes—the presiding chief judge of the New Jersey Supreme Court—talked about Ms. Quinlan’s loss of a cognitive, sapient state as being the moral warrant for her right to die, given the fact that it was viewed as a futile situation. I recognized, over the ensuing years—from my background in palliative and end-of-life care—[1] that we had over-generalized notions of futility... (shrink)

Joseph J. Fins calls for a reconsideration of severe brain injury treatment, including discussion of public policy and physician advocacy.

Book reviewed in this article: How We Die. By Sherwin B. Nuland. New York: Alfred A. Knopf.

The COVID-19 Pandemic a stress test for clinical medicine and medical ethics, with a confluence over questions of the proportionality of resuscitation. Drawing upon his experience as a clinical ethicist during the surge in New York City during the Spring of 2020, the author considers how attitudes regarding resuscitation have evolved since the inception of do-not-resuscitate orders decades ago. Sharing a personal narrative about a DNR quandry he encountered as a medical intern, the author considers the balance of patient rights (...) versus clinical discretion, warning about the risk of resurgent physician paternalism dressed up in the guise of a public health crisis. (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)

If ever I summon before me my highest ideals of men and medicine, I find them sprung from the spirit of Osler. —Wilder Penfield, M.D. Neuroethics is a recently coined term that is shaping our cultu...

This is the first article in a two-part series describing subject and family perspectives from the central thalamic deep brain stimulation for the treatment of traumatic brain injury using the Medtronic PC + S first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury, with subjects who were deemed capable of providing voluntary informed consent. In this article, we report on interviews conducted prior to surgery wherein we asked participants about their experiences recovering from (...) brain injury and their perspectives on study enrollment and participation. We asked how risks and benefits were weighed, what their expectations and fears were, and how decisions were reached about trial participation. We found that informed consent and enrollment decisions are fraught. Subjects and families were often split, with subjects more focused on putative benefits and families concerned about incremental risk. Both subjects and families viewed brain injury as disruptive to personal identity and relationships. As decisions were made about study enrollment, families struggled with recognizing the re-emergent agency of subjects and ceding decision-making authority to subjects who had previously been dependent upon them for protection and guidance. Subjects and family members reported a hope for the relief of cognitive disabilities, improved quality of life, normalization of interpersonal interactions, and a return to work or school as reasons for study participation, along with altruism and a desire to advance science. Despite these aspirations, both subjects and families appreciated the risks of the intervention and did not suffer from a therapeutic misconception. A second essay to be published in the next issue of Cambridge Quarterly of Healthcare Ethics—Clinical Neuroethics will describe interviews conducted after surgery, the effects of cognitive restoration for subjects, families, and challenges presented to the social structures they will call upon to support them through recovery. This subsequent article will be available online prior to its formal publication in October 2023. (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)

This is the second paper in a two-part series describing subject and family perspectives from the CENTURY-S (CENtral Thalamic Deep Brain Stimulation for the Treatment of Traumatic Brain InjURY-Safety) first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury (msTBI). To participate, subjects were independently assessed to formally establish decision-making capacity to provide voluntary informed consent. Here, we report on post-operative interviews conducted after a successful trial of thalamic stimulation. All five msTBI subjects met (...) a pre-selected primary endpoint of at least a 10% improvement in completion time on Trail-Making-Test Part B, a marker of executive function. We describe narrative responses of subjects and family members, refracted against that success. Interviews following surgery and the stimulation trial revealed the challenge of adaptation to improvements in cognitive function and emotional regulation as well as altered (and restored) relationships and family dynamics. These improvements exposed barriers to social reintegration made relevant by recoveries once thought inconceivable. The study’s success sparked concerns about post-trial access to implanted devices, financing of device maintenance, battery replacement, and on-going care. Most subjects and families identified the need for supportive counseling to adapt to the new trajectory of their lives. (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)

When the COVID-19 surge hit New York City hospitals, the Division of Medical Ethics at Weill Cornell Medical College, and our affiliated ethics consultation services, faced waves of ethical issues sweeping forward with intensity and urgency. In this article, we describe our experience over an eight-week period (16 March through 10 May 2020), and describe three types of services: clinical ethics consultation (CEC); service practice communications/interventions (SPCI); and organizational ethics advisement (OEA). We tell this narrative through the prism of time, (...) describing the evolution of ethical issues and trends as the pandemic unfolded. We delineate three phases: anticipation and preparation, crisis management, and reflection and adjustment. The first phase focused predominantly on ways to address impending resource shortages and to plan for remote ethics consultation, and CECs focused on code status discussions with surrogates. The second phase was characterized by the dramatic convergence of a rapid increase in the number of critically ill patients, a growing scarcity of resources, and the reassignment/ redeployment of staff outside their specialty areas. The third phase was characterized by the recognition that while the worst of the crisis was waning, its medium- and long-term consequences continued to pose immense challenges. We note that there were times during the crisis that serving in the role of clinical ethics consultant created a sense of dis-ease as novel as the coronavirus itself. In retrospect we learned that our activities far exceeded the familiar terrain of clinical ethics consultation and extended into other spheres of organizational life in novel ways that were unanticipated before this pandemic. To that end, we defined and categorized a middle level of ethics consultation, which we have termed service practice communication intervention (SPCI). This is an underappreciated dimension of the work that ethics consult services are capable of in times of crisis. We believe that the pandemic has revealed the many enduring ways that ethics consultation services can more robustly contribute to the ethical life of their institutions moving forward. (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)

When addressing cultural and religious differences in the clinical setting we need to be realists. Despite our public homage to pluralism and good intentions, it is just not possible to overcome all the differences that might exist and achieve perfect understanding of others. Try as we may, we will never be able to see perfectly the world through another's eyes. Instead of reaching for such perfection, we should instead reach for an approximation of shared understanding that will promote discourse and (...) civility when peoples of different races, genders, cultures, religions, and sexual preferences interact in the clinic. (shrink)

By considering the history of bioethics and international humanitarian law, Joseph J. Fins contends that bioethics as an academic and moral community should stand in solidarity with Ukraine as it defends freedom and civility.

As scholars envision a new regulatory or statutory neurorights schema it is important to imagine unintended consequences if reforms are implemented before their implications are fully understood. This paper critically evaluates provisions proposed for a new Chilean Constitution and evaluates this movement against efforts to improve the diagnosis of, and treatment for, individuals with disorders of consciousness within the broader context of disability law, international human rights, and a capabilities approach to health justice as advanced by Amartya Sen and Martha (...) Nussbaum. Framed in this way, any neurorights regime would need to satisfy several criteria. First it would be obliged to balance both positive and negative rights in the furtherance of human capabilities. Second, it would need to be future oriented and informed about the science it sought to regulate and not fall prey to science fiction fantasies that remain ungrounded in reality. Third, it would need to be specific and avoid generalizations that would lead to conceptual confusion and litigation that could delay scientific progress. Finally, it would need to harmonize novel neurorights with long-established norms in international disability and human rights law. A failure to meet these criteria will destine any novel neurorights regime to the periphery. At this juncture Chile’s nascent constitutional venture into neurorights fails to satisfy these criteria. While there yet may be a role for a more capacious and bivalent articulation of neurorights that account for capabilities and precedent, the current Chilean neurorights reforms are vague and premature. As such they should undergo additional scholarly scrutiny and should not be adopted by other jurisdictions. (shrink)

I am honored to pay tribute to Dr. Pellegrino and a bit humbled as there are so many others who would want to have this opportunity and who knew Dr. Pellegrino better than I. Tom Beauchamp suggested that I might place Dr. Pellegrino into the broader context of the history of medicine. He wrote Thaddeus Pope:Without being disrespectful of the many celebrated figures from Hippocrates to Percival, my view is that no physician has been more productive in the field or (...) made a greater contribution than Ed. I would like to see someone address this question.1And then he suggested my name. So here I am, an improbable choice because I wasn’t from the Kennedy Institute. I am a Hastings Center guy, two perennial teams, always .. (shrink)

While neuroethics is generally thought to be a modern addition to the broader field of bioethics, this subdiscipline has existed in clinical practice throughout the course of the 20th century. In this essay, Fins describes an older tradition of clinical neuroethics that featured such physician-humanists as Sir William Osler, Wilder Penfield, and Fred Plum, whose work and legacy exploring disorders of consciousness is highlighted. Their normative work was clinically grounded and focused on the needs of patients, in contrast to (...) modern neuroethics, which is more speculative and distant from the lived reality of the clinic. Using recent developments in the diagnosis and treatment of disorders of consciousness, and the history of the vegetative and minimally conscious states, Fins asks why modern neuroethics has taken this turn and what can be done to restore clinical neuroethics to a more proportionate place in the field. (shrink)

One of the challenging problems in large scale cyber-argumentation platforms is that users often engage and focus only on a few issues and leave other issues under-discussed and under-acknowledged. This kind of non-uniform participation obstructs the argumentation analysis models to retrieve collective intelligence from the underlying discussion. To resolve this problem, we developed an innovative opinion prediction model for a multi-issue cyber-argumentation environment. Our model predicts users’ opinions on the non-participated issues from similar users’ opinions on related issues using intelligent (...) argumentation techniques and a collaborative filtering method. Based on our detailed experimental results on an empirical dataset collected using our cyber-argumentation platform, our model is 21.7% more accurate, handles data sparsity better than other popular opinion prediction methods. Our model can also predict opinions on multiple issues simultaneously with reasonable accuracy. Contrary to existing opinion prediction models, which only predict whether a user agrees on an issue, our model predicts how much a user agrees on the issue. To our knowledge, this is the first research to attempt multi-issue opinion prediction with the partial agreement in the cyber-argumentation platform. With additional data on non-participated issues, our opinion prediction model can help the collective intelligence analysis models to analyze social phenomena more effectively and accurately in the cyber argumentation platform. (shrink)

Clinical ethics consultation is largely outside the scope of regulation and oversight, despite its importance. For decades, the bioethics community has been unable to reach a consensus on whether there should be accountability in this work, as there is for other clinical activities that influence the care of patients. The American Society for Bioethics and Humanities, the primary society of bioethicists and scholars in the medical humanities and the organizational home for individuals who perform CEC in the United States, has (...) initiated a two‐step quality attestation process as a means to assess clinical ethics consultants and help identify individuals who are qualified to perform this role. This article describes the process. (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)

Book reviewed in this article: How We Die. By Sherwin B. Nuland. New York: Alfred A. Knopf.

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)

Patient narratives from two investigational deep brain stimulation trials for traumatic brain injury and obsessive‐compulsive disorder reveal that injury and illness rob individuals of personal identity and that neuromodulation can restore it. The early success of these interventions makes a compelling case for continued post‐trial access to these technologies. Given the centrality of personal identity to respect for persons, a failure to provide continued access can be understood to represent a metaphorical identity theft. Such a loss recapitulates the pain of (...) an individual's initial injury or illness and becomes especially tragic because it could be prevented by robust policy. A failure to fulfill this normative obligation constitutes a breach of disability law, which would view post‐trial access as a means to achieve social reintegration through this neurotechnological accommodation. (shrink)

If ever I summon before me my highest ideals of men and medicine, I find them sprung from the spirit of Osler. —Wilder Penfield, M.D. Neuroethics is a recently coined term that is shaping our cultu...

: 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.

Building upon an earlier critique of the Food and Drug Adminstration (FDA) granting of a humanitarian device exemption for deep brain stimulation in treatment-resistant obsessive compulsive disorder, this article considers how we regulate and finance DBS. It suggests that these devices are mosaic in nature: both potentially therapeutic and probative and that their dual roles need to be appreciated to maximize their therapeutic and investigational potential.

“That's my dad on the floor.”And there he was unconscious in a pool of blood in the bathroom. A paramedic who had accompanied him to the john was holding him off the ground, the USMC tattoo on his forearm cradling his head. My sister shrieked, and I went down on my knees to see about his airway. “We need a doctor here. Cardiac Team!” Could this really be happening to him? To us? Jesus Christ.

Abstract:This paper, presented as the 2019 Cambridge Quarterly Neuroethics NetworkCharcot Lecture, traces the nosology of disorders of consciousness in light of 2018 practice guidelines promulgated by the American Academy of Neurology, the American College of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research. By exploring the ancient origins of Jennett and Plum’s persistent vegetative state and subsequent refinements in the classification of disorders of consciousness—epitomized by the minimally conscious state, cognitive motor dissociation, and the recently (...) described chronic vegetative state—the author argues that there is a counter-narrative to the one linking these conditions to the right to die. Instead, there is a more nuanced schema distinguishing futility from utility, informed by technical advances now able to identify covert consciousness contemplated by Jennett and Plum. Their prescience foreshadows recent developments in the disorders of consciousness literature yielding a layered legacy with implications for society’s normative and legal obligations to these patients. (shrink)

When confronted by the novel ethical challenges posed by a pandemic, it is helpful to turn to history for guidance and direction. In this essay, the author revisits Thucydides's description of the Plague of Athens from The Peloponnesian War as he considers the New York State Task Force on Life and the Law's 2015 guidelines on ventilator allocation. Confronted by the exigencies of the Covid‐19 surge that struck New York, he questions the task force's decision not to give any degree (...) of preference to health care workers who might become ill. He posits that they are due a compensatory ethic and some deference given the risks they have assumed, often with inadequate protective gear. Reflecting on his ambivalence, he asks if his change of heart reflects the impact of experiential learning or the erosion of nomos—or governing norms—described by Thucydides when the plague struck Athens. (shrink)

David and I were at a conference on Amelia Island in Florida back in 1995. The meeting, sponsored by the University of Florida, was entitled, “Physician-Assisted Death: Implications for Patients, Care Providers, and Society,” a title that seems quaint given the controversy over the right to die engendered by the Schiavo case. But that's a different talk for a different time.