A guide to end-of-life issues

Posted on June 25th, 2007

Archived in Aging, Health care, Medical ethics, Religion in American life

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Each day countless Americans and their families face the decisions and dilemmas that arise as people with serious diseases and injuries move toward death in a nation with:

  • a costly, fragmented and highly technological medical system;
  • an extremely diverse religious and spiritual character; and
  • a very litigious legal culture.

Disputes occurring at the end of life frequently rise to national attention, most recently the case of Emilio Gonzalez, a Texas toddler with a fatal neurological disease who died May 19, 2007, after a legal struggle between his doctors, who wished to end life support under a state law, and his mother, who opposed that action. Because of the many sources of potential conflict in this country, resolving issues that arise at the end of life is a major focus of the field of bioethics.

The bitter controversy that culminated in the 2005 death of Terri Schiavo riveted national attention on end-of-life issues and revealed the enormous range of opinions and beliefs that American hold about them. The debate revealed that the majority of Americans seemed to share two beliefs:

  • That end-of-life decisions are best made by individuals and families rather than by officials or legislatures; and
  • That the dying individual has the right to dignity and autonomy, including choosing the extent and kind of medical intervention in the dying process – which is the general basis of bioethical reasoning about end-of-life care in this country.

Law in the United States emphasizes the autonomy and dignity of the patient in medical decision-making. The right of patients to refuse medical intervention is well established. The courts have also defined artificial respiration, nutrition and hydration as medical interventions. The right affirmatively to end one’s own life exists only in the state of Oregon and can be exercised only under very limited circumstances. Whether physicians should aid in suicide is extremely controversial within the profession, however. Euthanasia, or actively ending someone else’s life without that person taking the step that causes death — as opposed to withdrawing life support from an otherwise dying individual — is not permitted anywhere in the United States. Pain medications, however, may be given in doses that could be potentially lethal if the intention is not ending the patient’s life but controlling otherwise intractable pain. Many conflicts arise when patients are unable to express their views and their wishes are either not clearly known or are disputed by family members.

Covering end-of-life issues and cases is complicated because much depends on the particular circumstances, including the precise medical condition and prognosis; the patient’s and family members’ religious, spiritual or moral beliefs; and the legal situation, which varies among states. Changes in any of these can alter the ethical calculus of the cases and raise additional, or different, bioethical questions. For example, the current drive in a number of states to revise laws on organ donation, in order to increase the supply of organs available from deceased individuals, has raised the issue of potential conflict between a dying person’s expressed desire both to donate organs after death and to avoid artificial extension of life, which may be necessary to preserve the organs in a condition suitable for donation.

ReligionLink’s Guide to end-of-life issues provides experts and resources to help journalists cover the conflicts and controversies that arise as changing medical technology and treatment extend the boundaries of survival and, on occasion, redefine society’s understanding of death, life, dignity and autonomy.

How to use this guide

This guide begins by outlining major end-of-life issues, then divides sources into two categories – national sources and organizations – and closes with background.



Regional sources
Northwest Northeast Northwest West Southwest Midwest South Southeast East Northwest Northeast Northwest West Southwest Midwest South Southeast East


Jump to:
Major end-of-life issues
National sources
Organizations
Religious
Christian
Jewish
Muslim
Organizations focused on end-of-life care
Major bioethics centers
Background

Major end-of-life issues

Physician-assisted suicide and euthanasia – The state of Oregon permits physicians, under strictly limited circumstances, to provide terminally ill patients with the means of ending their own lives.  Belgium and the Netherlands permit both physician-assisted suicide and, under strictly limited circumstances, euthanasia, or causing the death of the patient. In both countries, physicians may comply with requests to end the lives of patients undergoing intolerable suffering if specific legal requirements are met.  Both of these procedures are very controversial in the United States, both among health-care professionals and the public.

Advance care planning – Two years after the vast publicity and intense interest surrounding the Schiavo case, 80 percent of Americans still have not made an advance care document for themselves. Such documents serve the purpose of indicating who will serve as agent or surrogate if an individual is unable to make decisions concerning his or her own care. They also express the values that a person holds about the end of life.

Curing vs. relieving – The bright line that formerly existed between curative and palliative care, between curing a condition or relieving its symptoms, is becoming more blurred.

Resource allocation – In a time of intense competition for funding, how can the health-care system allocate sufficient resources to provide the staffing and staff time needed for adequate end-of-life care?

Pain – How can the health-care system deal with both the physical pain and the existential and spiritual suffering of dying individuals?

Care for families and caregivers – How can institutions be organized to aid both the dying and those involved in their care?

Potential conflicts between the desires of the dying – How can the wish to be an organ donor be reconciled with expressed desires to avoid artificial extension of life, which may be needed to preserve organs?

Definition of death – Most states in the United States define death as either the cessation of breathing and blood circulation or the cessation of all electrical activity in every part of the brain. Some people argue, however, that irreversible cessation of electrical activity in the cerebral cortex, which controls consciousness and cognition, constitutes death because the individual then has no possibility of regaining any capacity for thinking, awareness or other higher brain functions.

National sources

  • Tom Beauchamp is a professor of philosophy and a senior research scholar at Georgetown University’s Kennedy Institute of Ethics in Washington, D.C. In 1976, he joined the staff of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, where he wrote the bulk of The Belmont Report (1978), the first and still-definitive document on patients’ rights and human experimentation. Beauchamp is a co-author of Principles of Biomedical Ethics (Oxford University Press, 2001). Contact 202-687-6726, beauchat@georgetown.edu.
  • Nancy Berlinger is deputy director and research associate at the Hastings Center in Garrison, N.Y., and director of its Guidelines on End of Life Care project. Contact 845-424-4040 ext. 210, berlingern@thehastingscenter.org.
  • Dr. Ira R. Byock is director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon, N.H. He is past president of the American Academy of Hospice and Palliative Medicine and author of Dying Well: Peace and Possibilities at the End of Life. Contact 603-650-5402.
  • Nigel Cameron is research professor of bioethics and president of the Institute on Biotechnology and the Human Future at the Illinois Institute of Technology in Chicago. He is author of The New Medicine: Life and Death After Hippocrates and Death Without Dignity: Euthanasia in Perspective. Contact 312-906-5296, nigelcameron@aol.com.
  • Arthur Caplan is a professor and chairman of bioethics at the University of Pennsylvania, director of the university’s Center for Bioethics and a “go-to” bioethicist for many journalists. His books include, as co-editor, The Case of Terri Schiavo: Ethics at the End of Life. Contact 215-898-7136, caplan@mail.med.upenn.edu.
  • Dr. Christine Cassel is president and CEO of the American Board of Internal Medicine and ABIM Foundation, both in Philadelphia. She is a geriatrician, ethicist and co-editor of Approaching Death: Improving Care at the End of Life. Contact 215-446-3500.
  • James F. Childress is a professor of religious studies at the University of Virginia in Charlottesville. He co-wrote Principles of Biomedical Ethics (Oxford University Press, 1994), co-edited the Dictionary of Christian Ethics (Westminster, 1986), and wrote Moral Responsibility in Conflicts: Essays on Nonviolence, War and Conscience (Louisiana State University Press, 1983). Childress was vice chairman of the national Task Force on Organ Transplantation. Contact 434-924-6724, jfc7c@virginia.edu.
  • Larry R. Churchill holds the Ann Geddes Stahlman Chair of Medical Ethics at Vanderbilt University Medical School in Nashville. He also holds appointments in Vanderbilt’s divinity school and in the department of philosophy. Contact 615-936-2686, larry.churchill@vanderbilt.edu.
  • Charles A. Corr is professor emeritus of philosophical studies at Southern Illinois University in Edwardsville. He is on the executive committees of the National Donor Family Council and the International Work Group on Death, Dying and Bereavement. His books include, as co-author, Death and Dying, Life and Living. Contact charlescorr@mindspring.com.
  • Kenneth J. Doka is professor of gerontology in the graduate school of the College of New Rochelle in New Rochelle, N.Y., and senior consultant to the Hospice Foundation of America. His books include Living With Grief: Who We Are, How We Grieve and Pain Management at the End-of-Life. Contact 914-654-5418, Ken@DrKenDoka.com.
  • Rabbi Elliot Dorff is the rector and co-chairman of the bioethics department at the University of Judaism in Los Angeles. He wrote Matters of Life and Death: A Jewish Approach to Modern Medical Ethics. Contact 310-440-1255, edorff@uj.edu. (Ed. note: The University of Judaism merged with Brandeis-Bardin to become American Jewish University in 2007.)
  • Dr. Joseph J. Fins is chief of the division of medical ethics at Weill Medical College of Cornell University in Ithaca, N.Y, and professor of medicine, public health and medicine in psychiatry. He is also an associate at The Hastings Center. He wrote A Palliative Ethic of Care: Clinical Wisdom at Life’s End. Contact 212-746-9663.
  • Dr. John Collins Harvey is a professor of medicine emeritus and a senior research scholar for the Center for Clinical Bioethics at Georgetown University in Washington, D.C., where he specializes in end-of-life issues, including withdrawal of treatment, advance directives, euthanasia and physician-assisted suicide. An endowed lectureship in health-care ethics has been established in his honor. Contact 202-687-1160, harveyjc@georgetown.edu.
  • Sandra Johnson holds the Tenet Endowed Chair in Health Law and Ethics and is a member of the Center for Health Care Ethics at St. Louis University. She was a member of the committee that drafted the American Academy of Pain Medicine policy statement on quality care at the end of life. Contact 314-977-2791, johnsosh@slu.edu.
  • Rabbi Maurice Lamm is founder and president of the National Institute for Jewish Hospice in North Woodmere, N.Y., and author of The Jewish Way in Death and Mourning (revised edition published in 2000) and Consolation: The Spiritual Journey Beyond Grief (2005). Contact mlamm@nijh.org.
  • Dr. Joanne Lynn is a medical officer in the Office of Clinical Standards and Quality in the Centers for Medicare & Medicaid Services in the U.S. Department of Health & Human Services, in Baltimore. She is a pioneer in palliative care and care of the dying, and was formerly a senior researcher with RAND Health. Contact 410-786-5800, joanne.lynn@cms.hhs.gov.
  • The Rev. James J. McCartney is an associate professor of philosophy (on leave) at Villanova University in Villanova, Pa., a Catholic priest, and co-editor of The Case of Terri Schiavo: Ethics at the End of Life. Contact 610-527-3330 ext. 239, jamesjmccartney@comcast.net.
  • Dr. Diane Meier is founder and director of the Center to Advance Palliative Care. She is also professor of geriatrics and internal medicine and Catherine Gaisman Professor of Medical Ethics at Mount Sinai School of Medicine in New York City. Contact 212-241-1446, diane.meier@mssm.edu.
  • Dr. Timothy E. Quill is professor of medicine, psychiatry and medical humanities at the University of Rochester School of Medicine and Dentistry and director of palliative care at Strong Hospital in Rochester, N.Y. In 1991, he published an article in the New England Journal of Medicine about the death of a terminally ill patient that attracted wide attention and sparked national discussion of end-of-life issues. His books include Physician’s Guide to End-of-Life Care (as co-editor) and A Midwife Through the Dying Process: Stories of Healing and Hard Choices at the End of Life (as author). Contact 585-273-1154.
  • Larry I. Palmer is an emeritus professor focusing on ethical, legal and social issues at the Cornell Law School in Ithaca, N.Y. He is the author of Endings and Beginnings: Law, Medicine and Society in Assisted Life and Death. Contact lip1@cornell.edu.
  • Dr. Richard Payne is a professor of medicine and divinity and Esther Colliflower Director of the Institute on Care at the End of Life at Duke University in Durham, N.C. Contact 919-660-3553, rpayne@div.duke.edu.
  • John A. Robertson is Vinson and Elkins Professor at the University of Texas law school in Austin. He is the author of The Rights of the Critically Ill. Contact 512-471-4327, jrobertson@mail.law.utexas.edu.
  • David H. Smith is professor emeritus of religious studies and Nelson Poynter Senior Scholar at the Poynter Center for the Study of Ethics and American Institutions, both at Indiana University in Bloomington. He wrote Partnership With the Dying: Where Medicine and Ministry Should Meet. Contact 812-855-0261, smithd@indiana.edu.
  • Carol Taylor is director of the Georgetown University Center for Clinical Bioethics, assistant professor of nursing at Georgetown University in Washington, D.C., and a Roman Catholic nun. Contact 202-687-8955, taylorcr@georgetown.edu.
  • Karma Lekshe Tsomo is assistant professor of theology and religious studies at the University of San Diego. She is the author of Into the Jaws of Yama, Lord of Death: Buddhism, Bioethics and Death and co-editor of Living and Dying in Buddhist Cultures. Contact 619-260-4600 ext. 4921, ktsomo@sandiego.edu.
  • Dr. David E. Weissman is director of the Palliative Medicine Program and professor of medicine at the Medical College of Wisconsin. He is also co-director of the college’s End of Life/Palliative Education Resource Center and founding editor in chief of the Journal of Palliative Medicine. Contact 414-456-8296.
  • Paul Root Wolpe is a senior fellow at the Center for Bioethics at the University of Pennsylvania. He is first Chief of Bioethics for the National Aeronautics and Space Administration (NASA), charged with safeguarding research subjects and astronauts. He is also a professor in the Department of Psychiatry, director of the Program in Psychiatry and Ethics at the School of Medicine, and Senior Fellow of the Leonard Davis Institute for Health Economics. He is a member of Penn’s Cancer Center and Center for AIDS research. He is incoming President of the American Society for Bioethics and Humanities, is an editor of the American Journal of Bioethics, and has helped found three professional bioethics societies, two of which deal with issues of religion in bioethics. Contact 215-898-7136, wolpep@mail.med.upenn.edu.
  • Laurie Zoloth is a professor of medical ethics and humanities and of religion at Northwestern University’s Feinberg School of Medicine and director of the Center for Genetic Medicine at the university. She is on the national advisory board of The Robert Wood Johnson’s Project on Excellence at the End of Life. She is past president of the American Society for Bioethics and Humanities and was a two-term member of the NASA Advisory Council. She is author of Health Care and the Ethics of Encounter: A Jewish Discussion of Social Justice (University of North Carolina Press, 1999) and co-editor of Notes from a Narrow Ridge: Religion and Bioethics (University Publishing Group, 1999) and The Human Embryonic Stem Cell Debate (MIT, 2001). Contact 312-926-2990, lzoloth@northwestern.edu.

Organizations

RELIGIOUS

CHRISTIAN

JEWISH

MUSLIM

  • The Islamic Medical Association of North America in Lombard, Ill., has a code of medical ethics that includes a discussion of end-of-life care. Dr. Hossam M. Fadel is chair of the ethics committee. Shiraz Malik is executive director. Contact 630-932-0000, hq@imana.org.
  • Abdulaziz A. Sachedina is a coordinator of the Islamic bioethics group of the International Association of Bioethics and is a professor of Islamic and Shiite studies at the University of Virginia in Charlottesville. Contact 434-924-6725, Sachedina@virginia.edu.

Organizations focused on end-of-life care

  • The American Hospice Foundation supports programs that serve the needs of terminally ill and grieving individuals and provides education for dealing with grief, including in schools ad workplaces. Its Web site includes a collection of articles with practical information for the dying or the grieving. The foundation offers on-site training workshops and a “Grief at School Training Guide & Video” to help teachers respond to grieving children.Contact 202-223-0204.
  • The American Medical Association has issued a policy statement on provision of life-sustaining medical treatment based on the association’s Code of Medical Ethics. The association’s Institute for Ethics is an academic research center. Contact 312-464-4430 or 800-621-8335.
  • Americans for Better Care of the Dying in Alexandria, Va., advocates reform in end-of-life care, including better pain management, support for family caregivers and improved public policies. Contact 703-837-1233, info@abcd-caring.org.
  • The American Society of Law, Medicine & Ethics in Boston provides “high-quality scholarship, debate, and critical thought to the community of professionals at the nexus of law, medicine, and ethics.” Benjamin Moulton is executive director. Contact 617-262-4990, bmoulton@aslme.org.
  • The Association for Death Education and Counseling of Northbrook, Ill., promotes “excellence and recogniz[es] diversity in death education, care of the dying, grief counseling and research in thanatology.” Contact 847-509-0403.
  • Compassion & Choices is a national membership organization with headquarters in Denver and Portland, Ore., that seeks “to improve care and expand choice at the end of life.” It “aggressively pursue[s] legal reform to promote pain care, put teeth in advance directives and legalize physician aid in dying.” Contact 800-247-7421, info@compassionandchoices.org.
  • Caring Connections is a program of the National Hospice and Palliative Care Organization. It provides a wide range of information and resources about decision-making, advance planning, caregiving, pain control, palliative care and community resources. It has a toll-free help line, 800-658-8898. Contact 703-837-1500, caringinfo@nhpco.org.
  • The Center to Advance Palliative Care in New York City provides training, resources and technical assistance to health-care professionals who are starting and sustaining palliative care programs in hospitals and other health-care settings. Contact 212-201-2670.
  • The George Washington Institute for Spirituality and Health is associated with George Washington University in Washington, D.C., and works “toward a more compassionate system of healthcare by restoring the heart and humanity of medicine through research, education, and policy work focused on bringing increased attention to the spiritual needs of patients, families, and the healthcare professionals” in end-of-life care and other situations. Dr. Christina Puchalski is director. Contact 202-496-6409, hcscmp@gwumc.edu.
  • The Hospice Foundation of America, based in Washington, D.C., “provides leadership in the development and application of hospice and its philosophy of care with the goal of enhancing the American health care system and the role of hospice within it.” Its End of Life Info page corrects myths about dying. Contact 1-800-854-3402, hfaoffice@hospicefoundation.org.

Major bioethics centers

See linked lists of bioethics centers from:

Georgetown University is the nation’s oldest Catholic and Jesuit university, A pioneering bioethics institution, Georgetown has trained many of the most pre-eminent contemporary bioethicists. It is home to:


  • The Hastings Center, an independent research institution in Garrison, N.Y., is a national leader in research into ethical issues in all aspects of health care. Deputy director Nancy Berlinger is an expert in end-of-life issues. Contact press officer Gregory Kaebnick, 845-424-4040 ext. 227, kaebnickg@thehastingscenter.org.
  • Tuskegee University’s National Center for Bioethics in Research and Health Care was established in January 1999 as a partial response to the apology of President Clinton for the U.S. Public Health Service’s syphilis study conducted at Tuskegee, Ala., from 1932 to 1972. The center addresses ethical issues in science, technology and health, with an emphasis on effects among people of color and other minorities. Contact 334-724-4612, bioethics@tuskegee.edu.
  • The University of Minnesota Center for Bioethics has 15 full- and part-time faculty. Associate Director Dianne Bartels is an expert in end-of-life care issues. Contact the center, 612-624-9440, bioethx@umn.edu.
  • The University of Pennsylvania Center for Bioethics in Philadelphia is the pre-eminent bioethics center in the United States, with more than 20 faculty, led by Arthur Caplan. It opened in 1994 and is devoted to teaching and research. The center’s staff includes experts in philosophy, medicine, law, anthropology, sociology and religion. Its Web site is an excellent place to start an exploration of any bioethics topic and is also home to The American Journal of Bioethics. Contact 215-898-7136.

Background

Regional sources

IN THE NORTHEAST


IN THE SOUTHEAST

  • William Allen holds law and divinity degrees and is director of the Program in Bioethics, Law and Medical Professionalism at the University of Florida College of Medicine in Gainesville. Contact 352-273-5155, wmallen@ufl.edu.
  • Dr. Lofty L. Basta is founder of Project GRACE, a “partnership of physicians, elder care providers and concerned citizens of Florida dedicated to changing the death-defying, technology-driven approach to end-of-life care to a holistic, compassionate one that respects human dignity and the individual’s best interests and personal wishes.” He was formerly professor of medicine and chairman of cardiology at the University of South Florida College of Medicine in Clearwater. He wrote Life and Death on Your Own Terms. Contact 727-536-7364, llbasta@yahoo.com.
  • Janna C. Merrick is a professor in the department of government and international affairs at the University of South Florida in Tampa. She is co-editor of End-of-Life Decision Making: A Cross-National Study. Contact 813-974-2384, merrick@cas.usf.edu.
  • James L. Werth Jr. is associate professor of counseling psychology at the University of Akron and co-editor of Psychosocial Issues Near the End of Life: A Resource for Professional Care Providers. Contact 330-972-2505, jwerth@uakron.edu. After July 27, 2007, he will be professor of psychology and director of the Psy.D program in counseling psychology at Radford University in Radford, Va. Contact 540-831-5361, jameswerth@aol.com.
  • Raymond Whiting is an associate professor of political science at Augusta State University in Georgia and author of A Natural Right to Die: Twenty-Three Centuries of Debate. Contact rwhiting@aug.edu.

IN THE SOUTH

  • Ellen L. Csikai is an associate professor of social work at the University of Alabama in Tuscaloosa and co-author of Ethics in End of Life Decisions in Social Work Practice. Contact 205-348-4447, ecsikai@sw.ua.edu.
  • Dr. David J. Doukas holds the William Ray Moore Endowed Chair of Family Medicine and Medical Humanism at the University of Louisville, where he is also director of the division of medical humanism and ethics and professor of family medicine at the Institute for Bioethics, Health Policy and Law. He is a co-author of Planning for Uncertainty: Living Wills and Other Advance Directives for You and Your Family. Contact through Jackie Fryer, 502-852-1806.
  • John Hardwig is a professor and head of the philosophy department at the University of Tennessee in Knoxville. He wrote Is There a Duty to Die? And Other Essays in Bioethics. Contact 865-974-3255, jhardwig@utk.edu.
  • Chris Hackler is director of the division of medical humanities and a bioethics professor at the University of Arkansas College of Medicine in Little Rock. He edited Health Care for an Aging Population and co-edited Advance Directives in Medicine. Contact 501-661-7973, hacklerchris@uams.edu.

IN THE MIDWEST

  • Mark G. Kuczewski is director of the Neiswanger Institute for Bioethics and Health Policy and the Father Michael I. English, S.J., Professor of Medical Ethics at Loyola University Chicago Stritch School of Medicine. He is a member of the board of the American Society for Bioethics and Humanities. Contact mkuczew@lumc.edu.
  • Robyn Shapiro is director of the Center for the Study of Bioethics at the Medical College of Wisconsin in Milwaukee. She is the author of “Ethical and Legal Issues Surrounding Kidney Transplantation” in the Handbook of Kidney Transplantation. Contact 414-456-8498, rshapiro@mcw.edu.
  • Jos V.M. Welie is a professor in the Center for Health Policy and Ethics at Creighton University in Omaha, Neb. He is co-author of Death and Medical Power: An Ethical Analysis of Dutch Euthanasia Practice. Contact 402-280-2034, jwelie@creighton.edu.
  • James L. Werth Jr. is associate professor of counseling psychology at the University of Akron and co-editor of Psychosocial Issues Near the End of Life: A Resource for Professional Care Providers. Contact 330-972-2505, jwerth@uakron.edu. After July 27, 2007, he will be professor of psychology and director of the Psy.D. program in counseling psychology at Radford University in Radford, Va. Contact 540-831-5361, jameswerth@aol.com.
  • Susan M. Wolf is McKnight Presidential Professor of Law, Medicine and Public Policy, as well as Faegre & Benson Professor of Law and Professor of Law and Medicine at the University of Minnesota law school. She is also a professor of medicine at the University of Minnesota Medical School and a faculty member in the University’s Center for Bioethics in Minneapolis. She previously directed The Hastings Center project that produced the influential book Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying in 1987. Contact 612-625-3406, swolf@umn.edu.

IN THE SOUTHWEST

IN THE WEST/NORTHWEST

  • Ralph Baergen is a philosophy professor at Idaho State University in Pocatello and author of Ethics at the End of Life. Contact 208-282-3371, baerralp@isu.edu.
  • Peter H. Ditto is a professor of psychology and social behavior at the University of California-Irvine and a member of the American Psychological Association’s Working Group on Assisted Suicide and End-of-Life Decisions. Contact 949-824-1844, phditto@uci.edu.
  • Roberta Springer Loewy is an associate clinical professor of bioethics at the University of California, Davis. She is co-author of The Ethics of Terminal Care: Orchestrating the End of Life. Contact 916-734-2177, raloewy@ucdavis.edu.
  • James Walter is Professor Anne and Austin O’Malley Professor of Bioethics and chairman of the Bioethics Institute at Loyola Marymount University in Los Angeles. He co-edited Artificial Nutrition and Hydration and the Permanently Unconscious Patient: The Catholic Debate (scheduled for release in October 2007). Contact 310-258-8621, jwalter@lmu.edu.

IN THE EAST


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