Bioethics Research at The Hastings Center - The Hastings Center Guidelines on End-of-Life Care

Project Summary

The Hastings Center Guidelines on End-of-Life Care

The Guidelines project working group meeting in plenary session in New York City, January 22-23, 2007.

Participants in the Guidelines project research consultation with representatives of disability communities, Rehabilitation Institute of Chicago, July 23-24, 2007.

Foreground, left to right: Rebecca Brashler, RIC; Adrienne Asch, Guidelines working group; Gloria Ramsey, Guidelines working group; Nancy Berlinger, Guidelines project director.

Background, left to right: Carmen Cichetti, RIC; Kristi Kirschner, RIC and Guidelines working group.

Project Director: Nancy Berlinger

Project Consultants: Bruce Jennings and Susan Wolf

Funders: Sussman Charitable Trust and the Patrick and Catherine Weldon Donaghue Medical Research Foundation

Click here for a listing of The Hastings Center Guidelines on End of Life Care: Working Group

Project Goals and Objectives

The Hastings Center has convened a three-year project that will produce a revised, updated, and expanded version of an historic Center publication: Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (1987).

This project seeks to improve the quality of end of life care in the United States by providing ethical guidelines for the current generation of health care professionals on the decisions dying patients, their families, and other caregivers may face. The new guidelines will also describe the practices, policies, and other systems that support communications and decision making and promote access to palliative care, hospice care, and other services.

This project concerns a topic of high public interest. Its audiences include clinicians, policymakers, and experts responsible for providing, regulating, or improving end of life care, as well as journalists and scholars.
The Guidelines project’s working group held a plenary meeting in New York City on January 22-23, 2007. On July 23-24, 2007, the Rehabilitation Institute of Chicago hosted a research consultation where project leaders met with representatives of disability communities nationwide to explore issues of disability relevant to end of life care. The project’s leaders are now drafting text, planning further consultations, and exploring publication and dissemination options that will promote awareness and use of the new guidelines.

Current as of December 2007.

The Guidelines project is funded by a major grant from The Patrick and Catherine Weldon Donaghue Medical Research Foundation (www.donaghue.org) and a distribution from The Albert Sussman Charitable Remainder Annuity Trust.

For more information about the Guidelines project, please contact Nancy Berlinger, berlingern@thehastingscenter.org

The Hastings Center Guidelines on End of Life Care: Working Group
(list current as of March 9, 2007)

Adrienne Asch, PhD, MS, is the Edward and Robin Milstein Professor of Bioethics at Wurzweiler School of Social Work, professor of epidemiology and population health at Albert Einstein College of Medicine, and Director of the Center for Ethics at Yeshiva University. She was a contributor to Improving End of Life Care: Why Has It Been So Difficult? (The Hastings Center, 2005).

Mary Ann Baily, PhD, is associate for ethics and health policy at The Hastings Center. She was a coauthor of Access to Hospice Care: Expanding Boundaries, Overcoming Barriers (The Hastings Center, 2003).

Nancy Berlinger, PhD, MDiv, project director, is deputy director and associate for religious studies at The Hastings Center. She is the author of After Harm: Medical Error and the Ethics of Forgiveness (Johns Hopkins, 2005).

Susan Block, MD, is chief of the division of psychosocial oncology and palliative care at Dana-Farber Cancer Institute and Brigham and Women’s Hospital, codirector of the Harvard Medical School Center for Palliative Care, and professor of psychiatry at Harvard Medical School.

Robert A. Burt, JD, is Alexander M. Bickel Professor of Law at Yale Law School. He is the author of Death Is That Man Taking Names: Intersections of American Medicine, Law and Culture (University of California, 2002) and was a coauthor of Improving End of Life Care: Why Has It Been So Difficult? (The Hastings Center, 2005).

Daniel Callahan, PhD, is the director of the international program at The Hastings Center. He cofounded The Hastings Center in 1969 and served as its president from 1969-1996. He was an associate project director of the Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (The Hastings Center and Indiana University Press, 1987). His books include The Troubled Dream of Life: In Search of a Peaceful Death (Georgetown, 2000). He was a coauthor of Improving End of Life Care: Why Has It Been So Difficult? (The Hastings Center, 2005).

Nessa Coyle, NP, PhD, is a member of the pain and palliative care service of Memorial Sloan-Kettering Cancer Center. She is the coeditor, with Betty Ferrell, of the Textbook of Palliative Nursing (Oxford, 2nd ed., 2005).

J. Randall Curtis, MD, MPH, is professor of pulmonary and critical care medicine at the University of Washington in Seattle and director of the Harborview Medical Center/University of Washington End-of-Life Research Program. He is coeditor of Managing Death In the ICU: The Transition From Cure to Comfort (Oxford, 2001).

Nancy Neveloff Dubler, LLB, is director of the division of bioethics, department of family and social medicine, Montefiore Medical Center, where she directs the clinical ethics consultation service, and professor of bioethics at the Albert Einstein College of Medicine. She was a coauthor of Improving End of Life Care: Why Has It Been So Difficult? (The Hastings Center, 2005).

Linda Emanuel, MD, PhD, is the director of the Buehler Center on Aging, Health & Society at the Feinberg School of Medicine at Northwestern University. She is the founder and principal of the Education for Physicians in End-of-life Care (EPEC) project and established the Institute for Ethics at the American Medical Association. She was a coauthor of Access to Hospice Care: Expanding Boundaries, Overcoming Barriers (The Hastings Center, 2003).

Betty R. Ferrell, RN, PhD, is a research scientist in nursing research and education at the City of Hope Medical Center, principal investigator of the End-of-Life Nursing Education Consortium (ELNEC), and coeditor, with Nessa Coyle, of the Textbook of Palliative Nursing (Oxford, 2nd ed., 2005). She was a member of the review committee for the National Quality Forum's Framework and Preferred Practices for Palliative and Hospice Care (2007).

Joseph J. Fins, M.D, FACP, is chief of the division of medical ethics and professor of medicine, professor of public health and professor of medicine in psychiatry at Weill Medical College of Cornell University and a member of the adjunct faculty of Rockefeller University. He is also director of medical ethics at New York Presbyterian Hospital/Weill-Cornell Medical Center and the author ofA Palliative Ethic of Care: Clinical Wisdom at Life's End (Jones and Bartlett, 2006).

George Fitchett, DMin, PhD, is Director of Research and Associate Professor, Department of Religion, Health, and Human Values, at Rush University Medical Center. He has conducted numerous studies of chaplains and their work, developed spiritual assessment tools for clinical use, and collaborated with clinical researchers from medicine and nursing to investigate interdisciplinary questions related to spiritual care.

Alan Fleischman, MD, has recently been appointed Senior Vice President and Medical Director of the March of Dimes Foundation, having been a March of Dimes supporter and volunteer for over 20 years. He is also Chair of the Federal Advisory Committee to the National Children’s Study at the National Institute of Child Health and Human Development, NIH, and Clinical Professor of Pediatrics and Clinical Professor of Epidemiology and Population Health at the Albert Einstein College of Medicine in New York.

Kathleen Foley, MD, is an attending neurologist in the pain and palliative care service at Memorial Sloan-Kettering Cancer Center, where she holds the Chair of the Society of Memorial Sloan-Kettering Cancer Center in Pain Research. She was a coauthor of Improving End of Life Care: Why Has It Been So Difficult? (The Hastings Center, 2005).

Carlos Gomez, MD, PhD, is an associate director of the Institute for Education and Leadership at Capital Hospice. He was profiled in the Bill Moyers’s documentary, On Our Own Terms: Moyers on Dying (PBS, 2000).

Bruce Jennings, MA, project consultant, is the director of the Center for Humans and Nature, is senior consultant to The Hastings Center, and teaches at the Yale School of Public Health. He served as an associate project director of the Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (The Hastings Center and Indiana University Press, 1987), and, with Mildred Z. Solomon, was the cofounder of Decisions Near the End of Life, a continuing education program that reached 40,000 health care professionals in 32 states during 1991-97. He is a coauthor of Improving End of Life Care: Why Has It Been So Difficult? (The Hastings Center, 2005) and of Access to Hospice Care: Expanding Boundaries, Overcoming Barriers (The Hastings Center, 2003).

Sandra H. Johnson, JD, LLM, holds the Tenet Endowed Chair in Health Law and Ethics at Saint Louis University School of Law and Center for Health Care Ethics. She directed the Mayday Project on Legal and Regulatory Issues in Pain Relief at the American Society of Law, Medicine, and Ethics from 1996-2006. She was a coauthor of Improving End of Life Care: Why Has It Been So Difficult? (The Hastings Center, 2005). She is coeditor-in-chief of the Journal of Law, Medicine & Ethics.

Kristi L. Kirschner, MD, is director of the Donnelley Family Disability Ethics Program and medical director of the Women with Disabilities Center at the Rehabilitation Institute of Chicago., where she holds the Coleman Chair in Rehabilitation Medicine. She is an associate professor of physical medicine and rehabilitation, and of medical humanities and bioethics, at the Feinberg School of Medicine at Northwestern University.

Alan Meisel, JD, is professor of law, Dickie, McCamey & Chilcote Professor of Bioethics, and director of the Center for Bioethics and Health Law at the University of Pittsburgh. He served on the President’s Commission for the Study of Ethical Issues in Medicine and Biomedical and Behavioral Research and participated in the authorship of its report, Deciding to Forego Life-Sustaining Treatment. He is the principal author of the legal treatise, The Right to Die: The Law of End-of-Life Decisionmaking (Aspen., 3rd ed., 2004) and was a coauthor of Improving End of Life Care: Why Has It Been So Difficult? (The Hastings Center, 2005).

Richard Payne, MD, is Esther Colliflower Director of the Duke Institute on Care at the End of Life and professor of medicine and divinity at Duke Divinity School. His publications include the Institute of Medicine report, Approaching Death: Improving Care at the End of Life (1997).

Gloria Ramsey, RN, JD, is associate professor in the graduate school of nursing and director of community outreach and information dissemination at the Center for Health Disparities Research and Education at the Uniformed Services University of the Health Sciences.

Charles P. Sabatino, JD, is the director of the American Bar Association’s Commission on Law and Aging. He is the lead author of the American Bar Association Legal Guide for Older Americans (Random House, 1st ed., 1998).

Colleen Scanlon, RN, MS, JD, is senior vice president for advocacy at Catholic Health Initiatives in Denver, Colorado. She served on the coordinating council of the National Center for State Courts Project on End-of-Life Decision Making, which produced the book Resolving Disputes Over Life-Sustaining Treatments (1996).

Mildred Z. Solomon, EdD, is associate professor of social medicine at Harvard Medical School and vice president of the Education Development Center, Inc. With Bruce Jennings, she cofounded Decisions Near the End of Life, a continuing education program that reached 40,000 health care professionals in 32 states during 1991-1997. She is principal investigator of the Initiative for Pediatric Palliative Care, and has advised the Institute of Medicine on pediatric palliative care and on organ donation after cardiac death. Dr. Solomon currently sits on the U.S. Secretary of Health and Human Services Advisory Committee on organ donation, and is a national expert on the intersections between end-of-life care and organ donation. She directs the Harvard Medical School fellowship in medical ethics.

Daniel Sulmasy, OFM, MD, PhD, is a Franciscan friar, the Sisters of Charity Chair in Ethics at St. Vincent's Hospital in New York City, and professor of medicine and director of the bioethics institute of New York Medical College. Dr. Sulmasy’s most recent books are The Rebirth of the Clinic (Georgetown, 2006) and A Balm for Gilead: Meditations on Spirituality and the Healing Arts (Georgetown, 2006). He was a coauthor of Access to Hospice Care: Expanding Boundaries, Overcoming Barriers (The Hastings Center, 2003).

Susan M. Wolf, JD, project consultant, is McKnight Presidential Professor of Law, Medicine & Public Policy, Faegre & Benson Professor of Law, and professor of medicine at the University of Minnesota as well as a faculty member in the University’s Center for Bioethics. She was project director for the Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying (The Hastings Center and Indiana University Press, 1987).

Last Updated: 8 February 2008