Minding Brain Injury, Consciousness, and Ethics: Discourse and Deliberations
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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. 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]
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...
