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Speakerseries 2 0 SPEAKER SERIES 2018 LAW AND NEUROSCIENCE February 13, 2018 Class 5 Joseph J. Fins, M.D., M.A.C.P. The E. William Davis, Jr., M.D. Professor of Medical Ethics Chief of the Division of Medical Ethics and Professor of Medicine Co-Director, Consortium for the Advanced Study of Brain Injury Weill Cornell Medical College Solomon Center Distinguished Scholar in Medicine, Bioethics & the Law Yale Law School HOW NEUROSCIENCE CAN INFORM CIVIL RIGHTS AND DISABILITY LAW FOR PATIENTS WITH SEVERE BRAIN INJURY Reading Materials 1. Biographical information on Joseph J. Fins, M.D., M.A.C.P. 2. My Time in Medicine 3. Giving Voice to Consciousness 4. In Search of Hidden Minds 5. Rehabilitation, Education, and the Integration of Individuals with Severe Brain Injury into Civil Society: Towards an Expanded Rights Agenda in Response to New Insights from Translational Neuroethics and Neuroscience 6. Mosaic Decisionmaking and Reemergent Agency after Severe Brain Injury 7. Brain Injury and the Civil Right We Don’t Think About 8. Whither the “Improvement Standard”? Coverage for Severe Brain Injury after Jimmo v. Sebelius BIOGRAPHICAL INFORMATION ON JOSEPH J. FINS, M.D., M.A.C.P. Joseph J. Fins, M.D., M.A.C.P. is The E. William Davis, Jr. M.D. Professor of Medical Ethics and Chief of the Division of Medical Ethics at Weill Cornell Medical College where he is a Tenured Professor of Medicine, Professor of Medical Ethics in Neurology, Professor of Health Care Policy and Research, and Professor of Medicine in Psychiatry. He the founding Chair of the Ethics Committee of New York-Presbyterian Weill Cornell Medical Center where he is an Attending Physician and Director of Medical Ethics. A member of the Adjunct Faculty of Rockefeller University and Senior Attending Physician at The Rockefeller University Hospital, he Co- Directs, the Consortium for the Advanced Study of Brain Injury (CASBI) at Weill Cornell and Rockefeller. In 2014, he served as the Dwight H. Terry Visiting Scholar in Bioethics and Visiting Professor in the History of Medicine at Yale. In 2015, he was appointed the Solomon Center Distinguished Scholar in Medicine, Bioethics and the Law at Yale Law School. Dr. Fins is an elected Member of the National Academy of Medicine (formerly the Institute of Medicine) of the National Academy of Sciences, a Fellow of the American Academy of Arts and Sciences, and an Academico de Honor (Honored Academic) of the Real Academia Nacional de Medicina de España (the Royal National Academy of Medicine of Spain). A recipient of a Robert Wood Johnson Foundation Investigator Award in Health Policy Research, Dr. Fins has also received a Soros Open Society Institute Project on Death in America Faculty Scholars Award, a Woodrow Wilson National Fellowship Foundation Visiting Fellowship and support from the Dana, Buster and Katz Foundations and the National Institutes of Health, amongst others. He was appointed by President Clinton to The White House Commission on Complementary and Alternative Medicine Policy and currently serves on The New York State Task Force on Life and the Law by gubernatorial appointment. In 2015, Dr. Fins received the Patricia Price Browne Prize in Biomedical Ethics from the University of Oklahoma School of Medicine. Dr. Fins was graduated from Wesleyan University (B.A. with Honors, The College of Letters, 1982) and Cornell University Medical College (M.D., 1986). He completed his residency in Internal Medicine and Fellowship in General Internal Medicine at The New York Hospital-Cornell Medical Center and has served as Associate for Medicine at The Hastings Center. He is a Diplomat of the American Board of Internal Medicine, and was recertified in 2012. The author of over 300 publications, his most recent book is Rights Come to Mind: Brain Injury, Ethics and The Struggle for Consciousness (Cambridge University Press, 2015). Dr. Fins is also the author of A Palliative Ethic of Care: Clinical Wisdom at Life’s End (Jones and Bartlett, 2006) and a co-author of the 2007 Nature paper describing the first use of deep brain stimulation in the minimally conscious state. His current scholarly interests include ethical and policy issues in brain injury and disorders of consciousness, civil and disability rights for individuals with severe brain injury, palliative care, ethics in neurology and psychiatry, medical education, methods of ethics case consultation, the history of medicine and bioethics in the Spanish-speaking world. Dr. Fins is an associate editor of the 4th Edition of the Encyclopedia of Bioethics and the Journal of Clinical Ethics. He sits on the editorial boards of: The Hastings Center Report; The Pharos Alpha Omega Alpha Honor Medical Society; The Oncologist; Cambridge Quarterly of Healthcare Ethics, BioMed Central Medical Ethics; Neuroethics, American Journal of Bioethics; and Neuromodulation as well as the MIT Basic Bioethics Series. A Past President of the American Society for Bioethics and Humanities, he is a member of Board of Trustees of The Hastings Center and the International Neuroethics Society. He is a Master, and past Governor, of the American College of Physicians, been honored with the College’s Laureate Award and served as a trustee of the American College of Physicians Foundation. He is a Trustee Emeritus of Wesleyan University, which has honored him with its Distinguished Alumnus Award. Dr. Fins is also a Fellow of The Hastings Center and The New York Academy of Medicine where he served as a Fellow Ambassador. He was appointed to the Council of the Europaische Akademie (Germany) and is an elected member of the Dana Alliance for Brain Initiatives, the American Clinical and Climatological Association and Alpha Omega Alpha. My Time in Medicine Joseph J. Fins Perspectives in Biology and Medicine, Volume 60, Number 1, Winter 2017, pp. 19-32 (Article) Published by Johns Hopkins University Press DOI: https://doi.org/10.1353/pbm.2017.0016 For additional information about this article https://muse.jhu.edu/article/669111 Access provided by Cornell University (20 Sep 2017 19:45 GMT) My Time in Medicine Joseph J. Fins ABSTRACT Through this autobiographical reflection on a life in medicine and bioethics, the author discovers that time is a unifying theme in his work. From his early writing on the regulation of house staff work hours and his abandonment of essential- ism and the development of clinical pragmatism as a method of moral problem-solving to his scholarship on end-of-life care and disorders of consciousness, time has been a central heuristic in an effort to bridge ethical theory and clinical practice. UTOBIOGRAPHICAL ESSAYS CAN BE an indulgence. Often self-congratulatory Aand 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, Division of Medical Ethics, New York Presbyterian–Weill Cornell Medical Center, 435 East 70th Street, Suite 4-J, New York, NY 10021. E-mail: [email protected]. The author is grateful for the editorial comments of Amy B. Ehrlich and Samantha F. Knowlton, and to Franklin G. Miller for two decades of friendship and collegiality. Perspectives in Biology and Medicine, volume 60, number 1 (winter 2017): 19–32. © 2017 by Johns Hopkins University Press 19 Joseph J. Fins if I was lucky, past would be prologue, and I would learn something that might help me script the next few chapters in my story. I must confess that I was surprised by what I have come up with, and hence my predictable, but intentionally deceptive, title. This essay in not about my life in medicine, but rather about how time, as a heuristic, has informed and organized my clinical work as a doctor and my more theoretical scholarship as a bioethicist. And like all things temporal, this realization has only become apparent in retro- spect. As Kierkegaard (1843) wrote: It is perfectly true, as philosophers say, that life must be understood backwards. But they forget the other proposition, that it must be lived forwards. And if one thinks over that proposition it becomes more and more evident that life can never really be understood in time simply because at no particular moment can I find the necessary resting-place from which to understand it—backwards. (89) I wrote what I thought was my first reflection on time and medicine for a talk I gave in Salerno back in 2010, when I was writing my book Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness (2015). I was reflecting on the case of Terry Wallis, who had emerged from the minimally conscious state. Having been thought vegetative for nearly two decades, he was now able to talk and communicate reliably. The problem was that he was stuck in time. A veritable Rip Van Winkle, he remained in 1984, the year of his injury. Time had stopped for him, even as it had moved on for the rest of us (Fins 2009). Initially, this temporal lapse was a curiosity and presented practical challenges. Wallis thought his daughter, who resembled his ex-wife, was his wife. When he saw then-President George W. Bush giving a State of the Union address, he turned to his mother and asked, “What happened to Reagan?” (Fins 2015, 167). Wallis was living in what Augustine might have called “an eternal present,” but ironically it was 1984.
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