Biographical Sketches of Workshop Speakers and Planning Committee Members
Anthony Back, M.D., is a professor of medicine at the University of Washington, Division of Oncology, and the co-founder of VitalTalk. He is the co-director of the Cambia Palliative Care Center of Excellence with Dr. Randy Curtis. His research on patient–physician communication has been funded by the National Cancer Institute, Robert Wood Johnson Foundation, Gordon and Betty Moore Foundation, Arnold P. Gold Foundation, and many others. He was a faculty scholar for the Project on Death in America. He co-founded VitalTalk as a 501(c)(3) foundation with Dr. Robert Arnold and Dr. James Tulsky to use a start-up entrepreneurship approach to disseminating clinician-skills training for serious illness. Currently he is the principal investigator for Care.Lab, a national initiative funded by the John A. Hartford Foundation, to scale up innovations that improve care for serious illness. His research in physician-assisted dying dates back to 1996, before the Washington Death with Dignity legislation was passed, when he published a survey showing that 12 percent of physicians in Washington State had received an explicit request for physician-assisted suicide in the past year, and that the most common underlying reasons for these requests were non-physical—loss of control, being a burden, being dependent on others, and loss of dignity. Followup studies showed that physicians lacked expertise in communicating about patients’ fears in the dying process, and that many patients used physician-assisted dying as a gateway to a conversation about dying. He recently provided consultation to a consortium of Nordic countries considering legalization of physician-assisted dying practices. In his practice
as an oncologist in Washington State, he has been involved in many discussions with patients and families about these issues.
Jeffrey T. Berger, M.D., FACP, is the chief of the Division of Palliative Medicine and Bioethics at the New York University Winthrop Hospital and a professor of medicine at Stony Brook University School of Medicine. Dr. Berger currently chairs the Committee on Bioethical Issues of the Medical Society of the State of New York and is a member of the New York State Palliative Care Education and Training Council. He recently served as the chairman of the ethics committee of the American Academy of Hospice and Palliative Medicine, has served on the American College of Physicians’ Committee on Ethics, Professionalism, and Human Rights, and on the Clinical Ethics Consultation Affairs Committee of the American Society for Bioethics and Humanities. Dr. Berger is an associate editor of The Journal of Clinical Ethics and has published widely in the medical and bioethics literature. His particular interests are in surrogate decision making and end-of-life ethics.
Nancy Berlinger, Ph.D., is a research scholar at The Hastings Center, an independent, nonpartisan, nonprofit bioethics research institute based in Garrison, New York. She oversees the center’s program area on aging, chronic conditions, and the end of life. Her research interests include societal challenges arising from population aging. She co-directs a 2-year grant-funded planning process to develop a social ethics framework for bioethics scholarship in this area. Products will include an essay set to be published in early 2019. She directed the multiyear research and consensus project to revise the landmark Hastings Center Guidelines on treatment decision making and care near the end of life and was the first author of the new edition (Oxford University Press, 2013). Her collaborations with the Society of Hospital Medicine and the American Association of Critical-Care Nurses to translate ethics guidelines into practice have developed a primary palliative care communication process for frontline clinicians caring for seriously ill patients (2017). With colleagues at the National University of Singapore (NUS), the Ethox Centre of Oxford University, and The Hastings Center, she co-developed and co-edited the Singapore Bioethics Casebook, an online public tool for learning about treatment decision making (NUS, 2014) and ethical challenges in aging societies (NUS, 2017). She co-founded and co-directs The Hastings Center’s Undocumented Patients project, which maintains a Web-based knowledge hub used by clinicians, scholars, students, journalists, and policy makers and has developed policy recommendations for improved city-level solutions. Her books on problems of safety and harm in health care systems include After Harm: Medical Error and the Ethics of Forgiveness (Johns Hopkins
University Press, 2005) and Are Workarounds Ethical?: Managing Moral Problems in Health Care Systems (Oxford University Press, 2016). She is a member of the Bioethics Committee at Montefiore Medical Center and an adjunct lecturer at Lehman College, City University of New York, both in the Bronx, New York.
Mara Buchbinder, Ph.D., is an associate professor of social medicine and adjunct associate professor of anthropology at the University of North Carolina (UNC) at Chapel Hill, as well as core faculty in the UNC Center for Bioethics. Dr. Buchbinder is a medical anthropologist with broad interests in cultures of health, illness, and medicine in the United States. Her recent work focuses on how patients, families, and health care providers navigate social and ethical challenges resulting from changes in medical technology, law, and health policy. Her current project, the Vermont Study of Aid-in-Dying, is an ethnographic study of the implementation and cultural impact of Vermont’s Patient Choice and Control at End of Life Act. Dr. Buchbinder is the recipient of a Greenwall Faculty Scholars Award (2015–2017) and a 2017 Phillip and Ruth Hettleman Prize for Artistic and Scholarly Achievement by Young Faculty at UNC at Chapel Hill. Her research has been funded by the National Institutes of Health, the National Science Foundation, The Greenwall Foundation, and the Wenner-Gren Foundation.
Daniel Callahan is a pioneer in bioethics, a noted author, and one of the world’s preeminent bioethics scholars. He co-founded The Hastings Center with Willard Gaylin in 1969 and served as its director from 1969 to 1983 and president from 1984 to 1996. He is currently a member of its board of directors. He is a senior scholar at the Institute of Politics and Policy Studies at Yale University and has been a senior lecturer at Harvard Medical School. He is also a cofounder of the Yale–Hastings Program in Ethics and Health Policy. Dr. Callahan received his Ph.D. in philosophy from Harvard and his B.A. from Yale. He has honorary degrees from several universities, including Charles University in the Czech Republic. He is an elected member of the National Academy of Medicine and a member of the National Academy of Social Science, and he is a former member of the director’s advisory committee of the Centers for Disease Control and Prevention and of the advisory council of the U.S. Department of Health and Human Services Office of Scientific Integrity. He won the 1996 Freedom and Scientific Responsibility Award of the American Association for the Advancement of Science. He was awarded the 2008 Centennial Medal of the Harvard Graduate School of Arts and Sciences. Dr. Callahan is the author or editor of 47 books and 450 articles. His most recent books are The Five Horsemen of The Modern World: Climate, Food, Water, Chronic
Illness, and Obesity (Columbia University Press, 2016); In Search of the Good: A Life in Bioethics (MIT Press, 2012); The Roots of Bioethics: Health, Progress, Technology, Death (Oxford University Press, 2012); and Taming the Beloved Beast: How Medical Technology Costs Are Destroying Our Health Care System (Princeton University Press, 2009). He has contributed articles to The New York Times, the New England Journal of Medicine, the Journal of the American Medical Association, The New Republic, Deadalus, and The Atlantic.
Courtney S. Campbell, Ph.D., is the Hundere Professor of Religion and Culture at Oregon State University in Corvallis. He has been a member of the Oregon Hospice Association Ethics Task Force on Physician Aid in Dying and the National Hospice and Palliative Care Organization Ethics Task Force on Physician-Assisted Death. He has published several articles and essays on the impact of legalized physician-assisted death in Oregon and Washington for hospice programs as well as more general writings on end-of-life ethics.
James Childress, Ph.D., is a philosopher and theologian whose scholarship addresses ethics, particularly biomedical ethics. Currently he is the John Allen Hollingsworth Professor of Ethics at the Department of Religious Studies at the University of Virginia (UVA) and he teaches public policy at the Frank Batten School of Leadership and Public Policy. He is also professor of medical education at UVA and directs its Institute for Practical Ethics and Public Life. He holds a B.A. from Guilford College, a B.D. from Yale Divinity School, and an M.A. and a Ph.D. from Yale University. He was vice-chairman of the U.S. Task Force on Organ Transplantation, and he has also served on the board of directors of the United Network for Organ Sharing (UNOS), the UNOS Ethics Committee, the Recombinant DNA Advisory Committee, the Human Gene Therapy Subcommittee, the Biomedical Ethics Advisory Committee, and several data and safety monitoring boards for National Institutes of Health clinical trials. From 1996 to 2001 he served on the presidentially appointed National Bioethics Advisory Commission. He is a fellow of The Hastings Center, an independent bioethics research institution.
Dan Diaz is an advocate for end-of-life options. He was the husband of Brittany Maynard, the 29-year-old woman who died in November 2014 from a brain tumor. The couple moved from California to Oregon, one of seven states that has authorized medical aid-in-dying, in order for Brittany to have the option of a gentle dying process. As a result of Brittany’s story, legislators have introduced bills to authorize medical aid-in-dying in more than 25 states. Mr. Diaz advocates for expanding the availability of end-of-life options for terminally ill individuals. His efforts
were instrumental in securing the passage of the legislation in California, Colorado, and the District of Columbia. His efforts continue across the country, keeping the promise he made to Brittany.
Erik Fromme, M.D., M.C.R., is the director of the Serious Illness Care Program at Ariadne Labs. As director, he oversees the research, growth, and spread of the program. Prior to joining Ariadne, Dr. Fromme was the section chief and medical director for palliative care at Oregon Health & Science University, founding its outpatient palliative care program and developing a research program in patient-reported outcomes, hospice and palliative care health service research, and physician orders for life-sustaining treatment.
Linda Ganzini, M.D., M.P.H., is the associate director of the Health Services Research and Development Center of Innovation in the Veterans Affairs (VA) Portland Health Care System. Dr. Ganzini joined the Oregon Health & Science University (OHSU) Department of Psychiatry faculty immediately upon completion of a gerontology fellowship at the Portland VA Medical Center (PVAMC) in 1989. She also joined the psychiatry staff at the Portland VA as the director of the Consult Liaison Psychiatry Service (1989–1998, 2015–present). From 1994 to 1997, she was the director of the OHSU Medical Student Clerkship in Psychiatry, and from 1996 to 2001, she was the associate director of the OHSU Psychiatry Residency Training Program. The department honored her with the Psychiatry Residency Teaching Award in 1991 and the Distinguished Service Award in 1996 in recognition of her contributions to the residency training program. She was awarded the Nancy C. A. Roeske, M.D., Certificate of Recognition for Excellence in Medical Student Education by the American Psychiatric Association in 1997 and the Faculty Development Award in 2003. She was the director of the Health Services Research and Development Enhancement Award Program at the PVAMC between 2006 and 2013. Dr. Ganzini’s research interests are centered in the areas of geriatric mental health, end-of-life care issues, and suicide. Dr. Ganzini has published extensively in peer-reviewed journals, invited articles, book chapters, editorials, and commentaries on the topics of Oregon’s Death with Dignity Act, physician aid-in-dying, assessing mental health in the terminally ill, and medical ethics among psychiatrists and health care providers.
Jennifer Gibson, Ph.D., is the Sun Life Financial Chair in Bioethics and director of the University of Toronto Joint Centre for Bioethics; an associate professor in the Institute of Health Policy, Management & Evaluation and the Dalla Lana School of Public Health; and the director of the World Health Organization Collaborating Centre for Bioethics at the University
of Toronto. Dr. Gibson has a Ph.D. in philosophy (bioethics and political theory). Her program of research and teaching focuses on ethical issues at the level of health systems and institutions. She is particularly interested in the role and interaction of values in decision making at different levels in the health system and in developing evidence-informed and ethically grounded approaches to today’s wicked health problems, such as resource allocation, infectious disease outbreaks, complex chronic disease, and health equity locally and globally. Dr. Gibson has served on government and policy advisory committees related to Ebola preparedness and response, critical care triage, drug funding and supply, organ transplantation, pandemic planning, public health surveillance, and health system integration. Internationally, Dr. Gibson works closely with the World Health Organization and the Global Network of Collaborating Centres for Bioethics on global health ethics issues. Nationally, in 2015–2016, she chaired the Provincial–Territorial Expert Advisory Group on PhysicianAssisted Death and was an expert witness to the Canadian Parliament on Bill C-14, which is Canada’s federal legislation on medical assistance in dying (MAiD). She is a member and working group chair of the Canadian Council of Academies’ Expert Panel on MAiD, which was created at the request of the government of Canada to conduct three independent studies of medical assistance in dying in relation to mature minors, advance requests, and mental illness as a sole underlying medical condition. She is also working with various governance levels on data collection and monitoring of MAiD.
Scott Halpern, M.D., Ph.D., is an associate professor of medicine, epidemiology, and medical ethics and health policy at the University of Pennsylvania Perelman School of Medicine, and a practicing critical care medicine doctor. He is the founding director of the Palliative and Advanced Illness Research Center, which generates evidence to advance policies and practices that improve the lives of all people affected by serious illness. He is also the founding director of the Fostering Improvement in End-of-Life Decision Science program, the nation’s only program that applies behavioral economic principles to understand and improve upon the health decisions made by seriously ill patients, their caregivers, and their clinicians. Among his nearly 20 awards are The Greenwall Foundation Faculty Scholar Award in Bioethics, AcademyHealth’s Alice S. Hersh New Investigator Award, the Young Leader Award from the Robert Wood Johnson Foundation, the American Federation for Medical Research’s Outstanding Investigator Award for the best scientist in any field under the age of 45, and the Association for Clinical and Translational Science’s Distinguished Investigator Award for lifetime achievement in translation of clinical practice into public benefit and policy. He is an elected member
of the American Society of Clinical Investigation, a member of the editorial boards of the Annals of Internal Medicine and the American Journal of Bioethics, and from 2013 to 2015 he was an Anniversary Fellow at the Institute of Medicine. Dr. Halpern has authored more than 150 peer-reviewed articles, and this work has been featured in every major media outlet.
Barbara Hansen, R.N., is the chief executive officer of the Oregon Hospice and Palliative Care Association. She is an R.N. with more than 30 years of experience in hospice and home care in Oregon. She has been a hospice nurse case manager, clinical coordinator, and program director. She has also provided direct patient care as a wound and ostomy nurse and has visited home care and hospice programs in more than 30 states as a Joint Commission surveyor. She is passionate about improving access to home-based palliative care services.
Stephanie Harman, M.D., is a clinical associate professor in the Stanford University School of Medicine’s Department of Medicine and a recognized expert in palliative care, bioethics, and health care communication skills. She is currently the clinical section chief of palliative care in the Division of Primary Care and Population Health. She is the founding medical director of the adult palliative care program and co-chair of the ethics committee at Stanford Health Care, and she co-authored Stanford’s policy on participation in California’s End of Life Option Act. She served as a steering committee member and a panelist for the End of Life Option Act 2017 Main Convening of California Stakeholders Conference. She is an awardee of the 2017 Cambia Health Foundation’s Sojourns Scholar Leader program, a career award program for emerging palliative care leaders. Prior to that she completed a professorship grant from the Gold Foundation to teach humanistic communication, and she is a faculty member of the Academy of Communication in Healthcare. Her current projects include decision making for admissions to the intensive care unit and the application of machine learning and predictive informatics to improve palliative care access.
Katrina Hedberg, M.D., M.P.H., is the health officer and state epidemiologist with the Public Health Division of the Oregon Health Authority. Dr. Hedberg has worked at the Oregon Public Health Division for the past 25 years as a public health physician and manager in a variety of programs. She is also an affiliate professor in the Oregon Health & Science University–Portland State University School of Public Health. Dr. Hedberg received her undergraduate degree from Yale University and her medical degree from Oregon Health & Science University. She completed 1 year of clinical training at Emory University and then worked
for the Centers for Disease Control and Prevention from 1986 to 1989. Dr. Hedberg earned her master’s of public health degree from the University of Washington and is board certified in public health and preventive medicine. Dr. Hedberg has co-authored numerous publications, including articles on nontuberculous mycobacterial disease, a community-wide outbreak of cryptosporidiosis, smoking-related mortality, and Oregonians’ participation in the Death with Dignity Act. Her recent projects include evaluating the public health impact of marijuana legalization, and convening a task force to develop statewide prescribing guidelines to address the epidemic of opioid overdose and misuse in Oregon.
Barbara Jones, Ph.D., M.S.W., FNAP, is the associate dean for health affairs and University Distinguished Teaching Professor at The University of Texas (UT) at Austin Steve Hicks School of Social Work and the co-director of the Institute for Collaborative Health Research and Practice. She is the associate director of social sciences and community-based research at the LIVESTRONG Cancer Institutes and a professor of population health, psychiatry, and oncology at Dell Medical School. Dr. Jones’s research focuses on improving care for children, adolescents, and young adults with cancer and their families. She teaches courses across the curriculum on topics such as grief and loss, social work in health care, psychosocial oncology, and interprofessional education. Dr. Jones’s clinical experience has been primarily in the fields of pediatric oncology, children’s grief and loss, pediatric palliative and end-of-life care, adolescent and young adult oncology, grief, trauma, and survival. Her current research focuses on coordinated care for children facing illness, family resilience, pediatric palliative care, pediatric oncology social work interventions, and adolescent and young adult cancer survivors. Dr. Jones has received national awards for her work in oncology and palliative care, including the 2014 American Psychosocial Oncology Society Outstanding Training and Education Award, the 2013 Social Worker of the Year from the Association of Pediatric Oncology Social Workers, and the 2009 Project on Death in America Social Work Leadership Award. She has also received awards for her teaching, such as the 2014 UT Dads’ Centennial Teaching Fellowship Award, and in 2016 she was selected as a member of UT’s Academy of Distinguished Teachers.
John Kelly, M.A., is a long-time, Boston-based disability rights activist and writer. He is the New England regional director for Not Dead Yet, the national grassroots disability group opposed to legalizing assisted suicide. Since 2011 he has also been the director of Second Thoughts MA: Disability Rights Advocates Against Assisted Suicide. Mr. Kelly has been writing, testifying, and speaking out against the legalization of assisted
suicide for 20 years. Mr. Kelly has appeared on CNN and Fox News, and in The Boston Globe, Newark Star-Ledger, and many others. As someone commonly referred to as “paralyzed from the neck down” from a spinal cord injury, Mr. Kelly refutes the commonplace idea that people in his condition would be “better off dead,” as seen in myriad films from Whose Life Is It Anyway to Million Dollar Baby and last year’s hit Me Before You. He finds that the same prejudice animates much of the “right to die” movement, which translates disability into a poor “quality of life” judgment that pushes severely disabled people, including people disabled by their serious illness, toward death. During the assisted suicide ballot campaign in 2012, Mr. Kelly represented the disability rights perspective, thrice squaring off against assisted suicide proponent Dr. Marcia Angell. Other opposition groups often asked Mr. Kelly to represent them at public events. He has a master’s in sociology from Brandeis and is A.B.D. in its Ph.D. program. He has presented at academic conferences throughout the country. His most recent publication is an op-ed in The Boston Globe on January 16, 2018. It can be found at https://www.bostonglobe.com/opinion/2018/01/16/the-mass-legislature-must-say-assisted-suicide/oPzo9UYRWbf7jJMGfC9dxJ/story.html (accessed June 21, 2018).
John Keown, D.C.L. (Oxon.), holds the Rose Kennedy Chair in the Kennedy Institute of Ethics at Georgetown University. Formerly he taught the law and ethics of medicine in the Faculty of Law at the University of Cambridge. His books include Euthanasia Examined (Cambridge University Press, 1995); Euthanasia, Ethics and Public Policy (Cambridge University Press, 2002, 2nd edition forthcoming 2018); Debating Euthanasia (with Emily Jackson; Hart, 2012); The Law and Ethics of Medicine (Oxford University Press, 2012); and Bioethics and the Human Goods (with Alfonso Gómez-Lobo; Georgetown University Press, 2015). His research on euthanasia has been cited by the Law Lords and by the U.S. Supreme Court.
Scott Kim, M.D., Ph.D., is a senior investigator in the Department of Bioethics at the National Institutes of Health. Dr. Kim received his M.D. from Harvard and a Ph.D. in moral philosophy (on Kantian ethics) from the University of Chicago, and he trained in adult psychiatry at the Massachusetts General Hospital. Dr. Kim combines philosophical, clinical, and empirical research approaches to address a variety of ethical issues (ethical issues in pragmatic clinical trials, assessment of decision-making capacity, surrogate consent for incapacitated patients, theory and practice of informed consent, and physician-assisted death). He is especially interested in the interface between psychiatry and euthanasia/assisted suicide as the practice is actually implemented in Belgium and the Netherlands, and its implications for the United States and Canada. Dr. Kim’s work has
been supported by the National Institute of Mental Health, the National Institute of Neurological Disorders and Stroke, the National Institute on Aging, the National Human Genome Research Institute, the Michael J. Fox Foundation, the American Association for Geriatric Psychiatry, and The Greenwall Foundation. His work has appeared in the New England Journal of Medicine, Nature, JAMA, and other key journals. His book Evaluation of Capacity to Consent to Treatment and Research (Oxford University Press, 2010) was recently translated into Japanese. He currently serves on the Council of Canadian Academies Expert Panel on Medical Assistance in Dying. More information can be found at scottkimbioethics.org (accessed June 21, 2018).
Barbara A. Koenig, Ph.D., is a professor of bioethics and medical anthropology, based at the Institute for Health and Aging at the University of California, San Francisco (UCSF). She is the director of UCSF Bioethics, a nascent program that spans ethics research, clinical ethics, and ethics education across the university’s four professional schools. Professor Koenig pioneered the use of empirical methods in the study of ethical questions in science, medicine, and health. She has longstanding interests in palliative care and technology use near the end of life. In San Francisco in the early 1980s, she was one of the first anthropologists to work on the then-emerging epidemic of HIV/AIDS, focusing on the impact of the disease on clinicians’ care for dying patients. Professor Koenig also led the first National Institutes of Health–funded study of the dynamics of end-of-life decision making and patient choice in a public hospital cancer clinic serving patients from varied ethnocultural backgrounds; her work revealed the limitations of traditional bioethics practices in a diverse society. Professor Koenig’s research led to her being named a Soros Faculty Scholar in the Open Society Institute’s Project on Death in America. With the recent passage of California’s physician aid-in-dying legislation, she convened a statewide conference to bring together the law’s opponents and proponents to reflect on implementation challenges.
Joanne Lynn, M.D., M.S., is the director of the Center for Elder Care and Advanced Illness at the Altarum Institute. She is a geriatrician, hospice physician, health services researcher, quality improvement advisor, and policy advocate who has focused on shaping American health care so that every person can count on living comfortably and meaningfully through the period of serious illness and disability in the last years of life, at a sustainable cost to the community. She now leads Altarum’s work on elder care and advanced illness. Before coming to Altarum, Dr. Lynn was a consultant to the administrator of the Centers for Medicare & Medicaid Services, a faculty member of the Institute for Healthcare Improvement,
and a clinical expert in improvement for the Care Transitions Project at the Colorado Foundation for Medical Care. She has also been a senior researcher at RAND and a professor of medicine and community health at Dartmouth Medical School and George Washington University. Dr. Lynn has published more than 250 professional articles, and her dozen books include MediCaring Communities, a guide for reforms; The Handbook for Mortals, a guide for the public; The Common Sense Guide to Improving Palliative Care, an instruction manual for clinicians and managers seeking to improve quality; and Sick to Death and Not Going to Take it Any More!, an action guide for policy makers and advocates. She has also authored amicus briefs for key appellate court cases and has been often interviewed by reporters. Dr. Lynn is a member of the National Academy of Medicine and the National Academy of Social Insurance, a fellow of the American Geriatrics Society and The Hastings Center, and a master of the American College of Physicians. Her areas of expertise include chronic disease management, community health, managed care, end-of-life care, and the continuum of care.
David Magnus, Ph.D., is the Thomas A. Raffin Professor of Medicine and Biomedical Ethics and a professor of pediatrics and medicine at Stanford University, where he is the director of the Stanford Center for Biomedical Ethics and co-chair of the Ethics Committee for the Stanford Hospital. He is the former president of the Association of Bioethics Program Directors and is the editor-in-chief of the American Journal of Bioethics. He has published articles on a wide range of topics in bioethics, including research ethics, genetics, stem cell research, organ transplantation, and end-of-life and patient communication. He was a member of the Secretary of Agriculture’s Advisory Committee on Biotechnology in the 21st Century and currently serves on the California Human Stem Cell Research Advisory Committee. He is the principal editor of a collection of essays titled Who Owns Life? (2002) and his publications have appeared in the New England Journal of Medicine, Science, Nature Biotechnology, and the British Medical Journal. He has appeared on many radio and television shows, including 60 Minutes, Good Morning America, The Today Show, CBS This Morning, FOX News Sunday, ABC World News, and NPR. In addition to his scholarly work, he has published opinion pieces in the Philadelphia Inquirer, the Chicago Tribune, the San Jose Mercury News, and the New Jersey Star-Ledger.
Frances Norwood, Ph.D., is an assistant research professor in the Department of Anthropology and the Institute for European, Russian, and Eurasian Studies at George Washington University. She recently served as the president of the Washington Association of Professional Anthropologists. With a Ph.D. in medical anthropology from the University of California,
San Francisco, and the University of California, Berkeley, Dr. Norwood has more than 20 years of experience conducting health policy research on innovations in home- and community-based care, long-term care, and end-of-life supports for persons who are elderly and persons living with disabilities in the United States and the Netherlands. She is the author of a number of articles on chaplaincy and end-of-life care and is a recipient of the Margaret Mead Award for her book The Maintenance of Life (2009).
Bregje Onwuteaka-Philipsen, Ph.D., is a professor of end-of-life research at Vrije Universiteit Medical Center in Amsterdam, the Netherlands. She leads the research line “public health at the end of life” at the department of public and occupational health. This is part of the research program Aging and Later Life of the Amsterdam Public Health Research Institute. The main themes of this research line are palliative care, advance care planning, and end-of-life decisions. Furthermore, she is the chair of the Vrije Universiteit Medical Center Expertise Center for Palliative Care, in which all care, educational, and research activities in the field of palliative care come together. She has ample experience in leading and participating in national and international research projects. She leads the Dutch nationwide monitoring of end-of-life decision making and euthanasia regulation, which has taken place every 5 years since 1990 (before and after the enactment of the euthanasia law in 2002). She has been involved since 1995 and has led it since 2005. In 2001 this study was combined with a European Community study (EC 5th Framework), making it possible to compare end-of-life decision making between countries for the first time. She has more than 250 publications listed in PubMed.
David Orentlicher, M.D., J.D., is the Cobeaga Law Firm Professor at the University of Nevada, Las Vegas (UNLV), William S. Boyd School of Law and the co-director of the UNLV health law program. Nationally recognized for his expertise in health law and constitutional law, Dr. Orentlicher has testified before Congress, had his scholarship cited by the U.S. Supreme Court, and has served on many national, state, and local commissions. A graduate of Harvard Medical School and Harvard Law School, Dr. Orentlicher is the author of Matters of Life and Death and co-author of Health Care Law and Ethics, now in its 9th edition. He has published numerous articles and essays on a wide range of topics, including physician aid-in-dying, health care reform, reproductive decisions, affirmative action, and presidential power. Dr. Orentlicher’s work has appeared in leading professional journals, such as the New England Journal of Medicine and the Journal of the American Medical Association (JAMA), as well as in The New York Times, Time, USA Today, CNN Opinion, the Chicago Tribune, and other major newspapers. Dr. Orentlicher also has taught as
an adjunct or visiting professor at the University of Chicago Law School, Northwestern University School of Medicine, and Princeton University. He is a member of the American Law Institute and a former president of the American Society of Law, Medicine & Ethics. Dr. Orentlicher previously directed the American Medical Association’s Division of Medical Ethics, where he drafted the American Medical Association’s first patient’s bill of rights and many other guidelines relied upon by courts and government agencies, and he has practiced both law and medicine. Between 2002 and 2008, Dr. Orentlicher served in the Indiana House of Representatives, where he authored legislation to promote job creation, protect children from abuse and neglect, and make health care coverage more affordable.
Steven Pantilat, M.D., is a professor of medicine in the Department of Medicine at the University of California, San Francisco (UCSF), the Kates-Burnard and Hellman Distinguished Professor in Palliative Care, and the founding director of the UCSF Palliative Care Program, which received a Circle of Life Award from the American Hospital Association in 2007. Dr. Pantilat is an internationally recognized expert in palliative care. He is a leading voice for changing the health care system and creating innovative programs to improve care for people living with serious illness. Dr. Pantilat is the director of the Palliative Care Quality Network, a national collaboration of 100 palliative care teams focused on improving the quality of care. He also directs the UCSF Palliative Care Leadership Center. Dr. Pantilat wrote a book titled Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Their Caregivers (DaCapo Lifelong Books, 2017). He has also published more than 100 peer-reviewed scientific papers, authored two dozen book chapters, and co-edited with colleagues at UCSF two textbooks on palliative care titled Care at the Close of Life and Hospital-Based Palliative Medicine. Dr. Pantilat is board certified in hospice and palliative medicine and in internal medicine with focused practice in hospital medicine. Dr. Pantilat was elected a master of hospital medicine by the Society of Hospital Medicine in 2014 and is a fellow of the American Academy of Hospice and Palliative Medicine. In 2007 he was a Fulbright Senior Scholar at the Royal Prince Alfred Hospital in Sydney, Australia. He served as the president of the Society of Hospital Medicine in 2005–2006 and is the former chair of the ethics committee for the Society of Hospital Medicine. Dr. Pantilat serves on the UCSF Medical Center ethics committee.
Gary Pasternak, M.D., M.P.H., is the medical director at Mission Hospice and Home Care in San Mateo, California, and the co-director of the Mission House, a residential hospice home. He is board certified in
internal medicine and hospice and palliative medicine. Dr. Pasternak participated in developing Mission Hospice guidelines for implementing the California End of Life Option Act (EOLOA) and assists patients and families with the EOLOA.
Richard Payne, M.D., is the John B. Francis Chair in Bioethics at the Center for Practical Bioethics in Kansas City, Missouri. As of July 1, 2017, he was the Esther Colliflower Professor of Medicine and Divinity (Emeritus) at Duke Divinity School at Duke University. Dr. Payne created the Initiative to Improve Palliative Care for African Americans (IIPCA) in 1999 as a 501(c)(3) organization to promote education and research to improve access to pain management and palliative and end-of-life care for African American patients. He also directed the creation a palliative care curriculum for clinicians to address the needs of African American patients (APPEAL), which has been taught widely throughout the country. Dr. Payne created and directed a community-based palliative care program, the Harlem Palliative Care Network, to address the needs of medically underserved patients and families in New York City. This program eventually created the first inpatient hospice unit for the Harlem community, located in North General Hospital. He is the former chief of pain and symptom management at the MD Anderson Cancer Center and the chief of pain and palliative care service at Memorial Sloan Kettering Cancer Center. Dr. Payne’s work at Duke included directing the Institute for Care at the End of Life, which focused on connections between faith and medical communities to improve care of the serious and terminally ill. He also created several programs with Duke Divinity School and the Center for Practical Bioethics to educate pastors and lay faith leaders in African American churches in palliative care. Dr. Payne is board certified in neurology, pain medicine, and palliative care. He has more than 275 publications in these fields. He has also edited four books, given several endowed lectures, and received numerous awards in pain management, palliative care, and ethics.
Cheryl Phillips, M.D., AGSF, is the president and chief executive officer of the Special Needs Plans Alliance, a national leadership association for special needs and Medicare/Medicaid plans serving vulnerable adults. Prior to this she was the senior vice president for public policy and health services at LeadingAge. She has also served as the chief medical officer of On Lok Lifeways, the originator of the PACE (Program of All-Inclusive Care for the Elderly) model based in San Francisco, California, and the medical director for senior services and chronic disease management for the Sutter Health System, a network of doctors, hospitals, and other health providers in Northern California. As a fellowship-trained
geriatrician, her clinical practice focused on nursing homes and the long-term care continuum. While at Sutter Health, she developed and led a care coordination program for high-risk seniors enrolled in the Medicare Advantage plan. Dr. Phillips is a past president of the American Geriatrics Society and also a past president of the American Medical Directors Association, the physician organization for long-term care. She continues to serve on multiple technical advisory groups for chronic care, nursing home quality, and home- and community-based services and has provided multiple testimonies to the U.S. Congress. She served as a primary care health policy fellow under Secretary of Health and Human Services Tommy Thompson and she was appointed by the Governor of California as a California commissioner on aging and appointed to the Olmstead Advisory Committee for California. Dr. Phillips is on the board of directors of the SCAN Foundation.
Thaddeus Pope, J.D., Ph.D., is the director of the Health Law Institute and a professor of law at the Mitchell Hamline School of Law in Saint Paul, Minnesota. He is also an adjunct professor with the Australian Centre for Health Law Research at Queensland University of Technology, an adjunct associate professor with the Alden March Bioethics Institute at Albany Medical College, and a visiting professor of medical jurisprudence at St. Georges University. Dr. Pope has published more than 130 publications in leading medical journals, law reviews, bar journals, nursing journals, bioethics journals, and book chapters. He co-authored the definitive treatise The Right to Die: The Law of End-of-Life Decisionmaking and he runs the Medical Futility Blog. Dr. Pope works to calibrate the balance between individual liberty and public health in the end-of-life medical treatment context. Specific research topics have included medical futility, unwanted medical treatment, ethics committees, brain death, advance directives, surrogate decision making, unrepresented patients, aid-in-dying, and voluntarily stopping eating and drinking. More recently, Dr. Pope has been innovating new legal tools to better ensure fair internal dispute resolution mechanisms and adequate informed consent with patient decision aids. Prior to joining academia, Dr. Pope practiced at Arnold & Porter, and clerked on the U.S. Court of Appeals for the Seventh Circuit. Dr. Pope earned a J.D. and a Ph.D. in philosophy and bioethics from Georgetown University.
Timothy Quill, M.D., is the Thomas and Georgia Gosnell Distinguished Professor in Palliative Care at the University of Rochester Medical Center (URMC), where he is also a professor of medicine, psychiatry, medical humanities, and nursing. He was the founding director of the URMC Palliative Care Division and a past president of the American Academy
of Hospice and Palliative Medicine. Dr. Quill has published and lectured widely about various aspects of the doctor–patient relationship, with special focus on end-of-life decision making, including delivering bad news, non-abandonment, discussing palliative care earlier, and exploring last-resort options. He is the author of several books on end-of-life care and more than 150 articles published in major medical journals. Dr. Quill was the lead physician plaintiff in the New York State legal case challenging the law prohibiting physician-assisted death that was heard in 1997 by the U.S. Supreme Court (Vacco v. Quill). Dr. Quill received his undergraduate degree from Amherst College and his M.D. from the University of Rochester. He completed his internal medicine residency and a fellowship in medicine/psychiatry liaison at the University of Rochester School of Medicine and Dentistry. Dr. Quill is a fellow in the American Academy of Hospice and Palliative Medicine, a master in the American College of Physicians, and an American Board of Medical Specialties–certified palliative care consultant.
Peter Reagan, M.D., is a retired family physician who practiced for more than 30 years in Portland, Oregon. Dr. Reagan helped found a privately owned primary care clinic, Portland Family Practice, which provides full-spectrum care for all ages, including a large obstetrical component, inpatient pediatric and internal medicine, fairly extensive minor surgery, and frequent assisting in major surgery. When the Oregon Death with Dignity Act was on the ballot in 1994, Dr. Reagan, as a sympathetic physician, was involved in advocating for passage of the law. When the law went into effect 3 years later, he was asked to write the first legal prescription for aid-in-dying in the United States. During his time as a physician, Dr. Reagan wrote perhaps 25 prescriptions, of which perhaps 15 were used. After he retired from clinical practice in 2011, Dr. Reagan volunteered as a medical director for Compassion & Choices in Portland for 4 years, gaining experience in the practice of aid-in-dying as a consultant, both for individual cases and in the development of protocols and policies. Dr. Reagan has been asked to speak on many aspects of aid-in-dying at venues across the United States and Canada.
Omega Silva, M.D., is a professor emeritus of medicine at George Washington University, and she was a medical review officer for Employee Health Programs in Bethesda, Maryland. In 1999 Dr. Silva was appointed president-elect of the American Medical Women’s Association. Dr. Silva graduated cum laude with honors in chemistry from Howard University in 1958. She spent the next 5 years working as a chemist at the National Institutes of Health, and in 1963 she returned to Howard University to train as a physician. After earning an M.D. in 1967, Dr. Silva completed
a residency in internal medicine at the Veterans Administration Hospital in Washington, DC, and from 1970 to 1974 served as a fellow in endocrinology at George Washington University. In 1975 she was appointed an assistant professor of medicine at George Washington University, and in 1977 she was appointed an associate professor of oncology at Howard University. Dr. Silva has held academic posts at both institutions ever since, becoming a full professor at Howard in 1985 and at George Washington in 1991. From 1977 to 1996 Dr. Silva was the assistant chief of the metabolic section and the chief of the diabetic clinic at the Veterans Affairs Medical Center in Washington, DC. Dr. Silva served as the president of the American Medical Women’s Association from 2000 to 2002. She has served on six separate advisory groups for the National Institutes of Health and was a consultant to the Food and Drug Administration’s immunology section from 1981 to 1989. Dr. Silva has also served on the board of directors for the Howard University Medical Alumni Association, the National Association of Veterans Affairs Physicians, the American Medical Women’s Association, and the Foundation for the History of Women in Medicine. In 1984 Dr. Silva received a letter of commendation from the President Reagan, and in 1995 she was given a letter of thanks from President Clinton for her participation in health care reform. In 2003 Dr. Silva was elected to a mastership at the American College of Physicians. She is also listed in American Men and Women of Science, Who’s Who in Black America, Who’s Who in Professional and Executive Women, and Who’s Who of American Women.
Anita Silvers, Ph.D., is a professor and the former chair of the Philosophy Department at San Francisco State University (SFSU) and an affiliate of the SFSU Health Equity Institute. Disabled by polio as a child, Dr. Silvers is a leading advocate for equality for persons with disabilities. Her papers and books have contributed to the legal interpretation of the Americans with Disabilities Act, enacted in 1990. Her groundbreaking and acclaimed monograph Disability. Difference. Discrimination: Formal Justice (1998) is widely cited in legal affairs. Americans with Disabilities (2000), which she co-edited with Leslie Pickering Francis, anthologizes essays by leading philosophers as well as legal theorists, bioethicists, and policy makers on the foundational concepts of disability law and policy. On the faculty at SFSU since 1967, Dr. Silvers has worked to make access and disability services available on California college campuses. In 1980 she was appointed by President Jimmy Carter to serve on the National Council for the Humanities, the governing board of the National Endowment for the Humanities. Dr. Silvers has received the Phi Beta Kappa Society’s Lebowitz Prize for philosophical achievement and contribution, the Quinn Prize for service to philosophy and philosophers from
the American Philosophical Association, the California State University System’s Wang Outstanding Faculty Excellence Award, and the inaugural Human Rights Award from the California Faculty Association. Dr. Silvers is regarded as an authority on social philosophy, medical ethics, and bioethics.
Helene Starks, Ph.D., M.P.H., is an associate professor in the Department of Bioethics and Humanities, School of Medicine, and adjunct associate professor in the Departments of Health Services, Family Medicine, and Pediatrics at the University of Washington (UW). She is also the director of the Metrics, Quality & Evaluation Core for the Cambia Palliative Care Center of Excellence and core faculty in the Graduate Certificate in Palliative Care, offered jointly by the schools of nursing and medicine. She received an M.P.H. in health policy and administration from the University of California, Berkeley, and a B.A. in communications and a Ph.D. in health services research from UW. Dr. Starks’s current research interests include issues related to palliative and end-of-life care for patients, their family members, clinicians, and health systems; medical decision making and clinician–patient communication; qualitative and mixed-methods research; stakeholder engagement; implementation and dissemination science; and quality improvement and systems change. She is currently leading a study on patient and family experiences with the California End of Life Option Act. As the director of the Metrics, Quality & Evaluation Core for the Cambia Palliative Care Center of Excellence, she led the development and implementation of a metrics reporting system to support all four UW Medicine hospitals in achieving certification in specialty palliative care from the Joint Commission in spring 2016. Dr. Starks is also part of a team developing ongoing quality metrics using electronic health records data for 18 measures of quality primary and specialty palliative care. She currently serves on the Quality Committee for the American Academy of Hospice and Palliative Medicine to promote further dissemination of these quality metrics.
Thomas Strouse, M.D., is a professor of clinical psychiatry and the inaugural holder of the Maddie Katz Chair in Palliative Care Research and Education. He is also the medical director of Stewart and Lynda Resnick Neuropsychiatric Hospital at the University of California, Los Angeles (UCLA), and the vice-chair for clinical affairs in the David Geffen UCLA School of Medicine Department of Psychiatry. Dr. Strouse has been a faculty member at UCLA since he completed his residency training there in 1991. Early in his career he was director of the UCLA Consultation/Liaison Psychiatry Service and worked closely with the UCLA liver trans-
plant program for more than a decade. He served from 1994 to 2007 as the director of cancer pain management and supportive oncology services at the Outpatient Cancer Center at Cedars-Sinai Medical Center. Along with his current efforts to promote palliative care clinical research within the UCLA Health System, Dr. Strouse continues to attend on the Ronald Reagan UCLA Medical Center Palliative Care Consultation Service and is actively engaged with UCLA’s Operation Mend, a program for wounded U.S. servicemen and women. In 2003 he received the Robert T. Angarola Award, the highest honor bestowed by the Southern California Cancer Pain Initiative to the individual most allied with improving quality of life for persons with cancer in a given year. Dr. Strouse is a fellow of the Academy of Psychosomatic Medicine and an American Psychiatric Association distinguished fellow and a member of the American College of Psychiatrists. He is board certified in general psychiatry, psychosomatic medicine, and hospice/palliative medicine. In July 2014 Dr. Strouse assumed the role of chair of the American Board of Internal Medicine Test Committee responsible for writing the certifying exam for all North American physician candidates for the American Board of Medical Specialties subspecialty of hospice and palliative medicine. In 2010 he was appointed associate editor of the Journal of Supportive Oncology and is now the editor of the Journal of Community and Supportive Oncology; in 2017 he became an associate editor of the Journal of Palliative Medicine.
Daniel Sulmasy, M.D., Ph.D., is the André Hellegers Professor of Biomedical Ethics in the Departments of Medicine and Philosophy at Georgetown University, where he is a faculty member of the Pellegrino Center for Clinical Bioethics and a senior research scholar in the Kennedy Institute of Ethics. He has served on numerous governmental advisory bodies, including the Presidential Commission for the Study of Bioethical Issues from 2010 to 2017.
James A. Tulsky, M.D., of the Dana-Farber Cancer Institute has a longstanding interest in doctor–patient communication and quality of life in serious illness, and he has published widely in these areas. His current research focuses on the evaluation and enhancement of communication between oncologists and patients with advanced cancer; the identification of clinical, psychosocial, and spiritual trajectories of patients at the end of life; development of self-management interventions for patients with life-limiting illness; and evaluating the role of palliative care in congestive heart failure. He is a founding director of VitalTalk (www.vitaltalk.org), a nonprofit devoted to nurturing healthier connections between clinicians and patients through communication skills teaching.
Neil Wenger, M.D., M.P.H., is a professor of general internal medicine and health services research at the University of California, Los Angeles (UCLA). He directs the UCLA Health Ethics Center and is a general internist who specializes in the care of the complex patient. He is a consulting researcher at RAND.
Matthew Wynia, M.D., M.P.H., is the director of the Center for Bioethics and Humanities at the University of Colorado. Trained in internal medicine, infectious diseases, public health, and health services research, Dr. Wynia currently splits his time between clinical, administrative, research, and outreach responsibilities at the American Medical Association (AMA) and the University of Chicago, both in Chicago, and the University of Colorado’s Anschutz Medical Campus. In July 2015 he moved to Colorado to serve as the full-time director of the university’s Center for Bioethics and Humanities. Dr. Wynia has developed a research institute and training programs focusing on bioethics, professionalism, and policy issues (the AMA Institute for Ethics) and founded the AMA’s Center for Patient Safety. He has led projects on a wide variety of issues related to ethics and professionalism, including understanding and measuring the ethical climate of health care organizations and systems; ethics and quality improvement; communication, team-based care, and engaging patients as members of the team; defining physician professionalism; public health and disaster ethics; medicine and the Holocaust; and inequities in health and health care. He has delivered more than two dozen named lectures and visiting professorships nationally and internationally and is the author of more than 140 published articles, chapters, and essays; the co-editor of several books; and the co-author of a book on fairness in health care benefit design. He is a past president of the American Society for Bioethics and Humanities, and a past chair of the ethics forum of the American Public Health Association and the ethics committee of the Society for General Internal Medicine.