Mending the Brain, Minding Our Ethics
Nicholas D. Schiff, M.D., and Joseph J. Fins, M.D., F.A.C.P.
Cornell University Medical College, New York, NY
Grant Program:
Clinical Neuroscience Research
Funded in:
September 2005, for 3 years
Funding Amount:
$300,000
Lay Summary
Mending the Brain, Minding Our Ethics
The researchers are currently studying a patient who, after years of being in a minimally conscious state, recently emerged from this state and has regained some of his communication abilities. Under the proposed Dana grant, the researchers plan to compare physiological and related brain functions of this patient with adults who are in the upper levels of minimal consciousness. Ten minimally conscious adults will be identified within the more than thirty hospitals that make up the New York Presbyterian Health Care System. Following clinical exams, the patients will undergo testing to identify functioning neurons and neural networks. This will include Diffusion-Tensor imaging (DTI) to identify intact nerve connections (networks), PET imaging to identify “active” brain areas (that are using fuel), and 24-hour EEG to track brain signals. Patients will be assessed over time to capture brain changes, which will be correlated with their behavior.
Throughout the study, the Cornell investigators will also explore the experiences of the patients and their families through structured interviews, to assess how information is conveyed and to identify problems that signal the need for changes in practice. The researchers will address how the ethical dimensions of decisions, such as informed consent and refusal, relate to increased information provided by the brain scans and EEG. Are surrogate decision-makers more or less likely to authorize study or treatment depending upon the level of the patient’s consciousness? Among ethical questions facing clinicians is the potential conflict of interest. How, for instance, would clinicians weigh the importance of obtaining research findings if surrogate decision-makers prefer to curtail use of research measurements or treatments?
Results of this study are anticipated to add to the scientific basis for distinguishing among levels of minimal consciousness that can improve the clinicians’ abilities to predict outcomes of care and treatment. Results also are expected to provide the template for development of practice standards for future research and care for consideration by the American Academy of Neurology.
Abstract
Mending the Brain, Minding Our Ethics
We will draw upon data generated from our ongoing studies of patients with severe brain injuries and our clinical experience in ethics consultation with affected families to better delineate clinical criteria that will help inform diagnostic thinking, prognostication, and the development of care plans and clinical research. By bridging the interface between neuroscience and neuroethics in this real world fashion, we hope to contribute to the evolution of patient care and foster the continued progress of responsible and responsive research in this area of science.
During the grant period, we will focus on expanding data collection from prospectively identified patients who are on the upper limits of the minimally conscious states and from those who have recently emerged by reestablishing functional communication and to understand the differences between them. In tandem with this scientific assessment, we will also systematically interview families about their experiences with the health care system and how care and communication with clinicians might be improved.
Specifically, we will prospectively identify patients with severe disorders of consciousness from within the 30+ hospitals in the New York Presbyterian Health Care System or other sources and study a small number of individuals with clinical examinations, neuroimaging studies, and electrophysiologic studies as well as structured quantitative and qualitative interviews with their families. These studies will be used to further inform practice guidelines that we will draft during the study period and provide data to further support RO1 funding for larger scale studies, both neurophysiologic (Schiff) and epidemiologic (Fins).
Investigator Biographies
Nicholas D. Schiff, M.D., and Joseph J. Fins, M.D., F.A.C.P.
Nicholas D. Schiff, M.D., is Assistant Professor of Neurology and Neuroscience at the Weill Medical College of Cornell University and Assistant Attending Neurologist at the New York Presbyterian Hospital. He is Director of the Laboratory of Cognitive Neuromodulation at Weill-Cornell where he conducts clinical studies of the pathophysiology of impaired consciousness as well as basic studies of the neurophysiological mechanisms of arousal and the effects of neuromodulation on forebrain integration.
A diplomat of the American Board of Psychiatry and Neurology, Dr. Schiff is a graduate of Stanford University and the Cornell University Medical College. He completed his residency in Neurology at the New York Hospital and served as the Administrative Chief Resident of the Neurology Department 1995-1996 working with Dr. Fred Plum, one of the pioneering neurologists in the field of disorders of consciousness. Since completing residency training, Dr. Schiff has continued his research with grant support from the NIH (NINDS) and private foundations (Charles A. Dana Foundation). He has authored over 30 peer-reviewed scientific publications that span original work in clinical neuroimaging, advanced signal processing of neurophysiological data, and the fundamental neurophysiology of cortical and thalamic neurons. His long-range goals are to develop neuromodulation strategies and improved diagnostics for the rational therapy of chronic cognitive disabilities resulting from brain injuries.
Joseph J. Fins, M.D., F.A.C.P., is Chief of the Division of Medical Ethics at Weill Medical College of Cornell University where he serves as Professor of Medicine, Professor of Public Health, and Professor of Medicine in Psychiatry. In addition, Dr. Fins is Director of Medical Ethics at New York-Presbyterian Weill Cornell Medical Center, Associate for Medicine at The Hastings Center, and a member of the Adjunct Faculty of Rockefeller University. He has been a Visiting Professor in Medical Ethics at the Complutense University in Madrid and is a recipient of a Soros Open Society Institute Project on Death in America Faculty Scholars Award and a Woodrow Wilson National Fellowship Foundation Visiting Fellowship. In July 2000, Dr. Fins was appointed by President Clinton to the White House Commission on Complementary and Alternative Medicine Policy. A diplomat of the American Board of Internal Medicine, Dr. Fins is a graduate of Wesleyan University (B.A. with Departmental 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.
A practicing internist at New York Presbyterian-Weill Cornell Medical Center, Dr. Fins chairs the hospital’s ethics committee and teaches medicine and clinical ethics to Cornell medical students and house staff. He is the author of more than one hundred fifty publications in medical ethics and health policy and A Palliative Ethic of Care: Clinical Wisdom at Life’s End published by Jones and Bartlett (2005). He has lectured widely in the United States, Europe, and Latin America. His current scholarly interests include ethical issues in brain injury and disorders of consciousness, palliative care, research ethics in neurology and psychiatry, medical education, and methods of ethics case consultation. He is a member of the Editorial Board of the Journal of Pain and Symptom Management as well as The Oncologistand has served as Abstracts Associate Editor for the Journal of the American Geriatrics Society and Co-Editor of the Department of Bioethics for Cancer Investigation.
Dr. Fins serves on the Board of Trustees of Wesleyan University, the Fund for Modern Courts, the National Advisory Committee of The Woodrow Wilson National Fellowship Foundation, and the Board of Directors of the American Society of Bioethics and Humanities. Previously, he served on the board of the New York Organ Donor Network. He is Chair of the Health and Public Policy Committee of the New York Chapter of the American College of Physicians and is an elected Fellow of the American College of Physicians and the New York Academy of Medicine. He is the recipient of a Health Advocacy Award of the New York Society of Patient Representatives and the Wholeness of Life Award of the HealthCare Chaplaincy. Dr. Fins served on Mayor-Elect Rudolph Giuliani’s Transition Team Health Care Advisory Group and has been a consultant to the Pan American and World Health Organizations. From 1997-1998, Dr. Fins served on the New York State Attorney General’s Commission on Quality Care at the End of Life.
Selected Publications
Fins J.J., Schiff N.D., and Foley K.M. Late recovery from the minimally conscious state: ethical and policy implications. Neurology. 2007 Jan 23;68(4):304-7 .
Schiff N.D. Measurements and models of cerebral function in the severely injured brain. J Neurotrauma. 2006 Oct;23(10):1436-49 .
Voss H.U., Uluç A.M., Dyke J.P., Watts R., Kobylarz E.J., McCandliss B.D., Heier L.A., Beattie B.J., Hamacher K.A., Vallabhajosula S., Goldsmith S.J., Ballon D., Giacino J.T., and Schiff N.D. Possible axonal regrowth in late recovery from the minimally conscious state. J Clin Invest. 2006 Jul;116(7):2005-11 .
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