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.
If you would like
to be added to this source listing or request a change in the information, please
email bioethics@religionlink.org. If you
are requesting a change in the wording of your listing, please state the reason
for the change. ReligionLink reserves the right to decide which listings to
include.
• For organizations,
include the name, mission, Web site and a contact name with phone number and
email. Also include any specific areas of interest and expertise.
• For individuals,
include name, title, organization, Web site, areas of expertise, phone number
and email.
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.
Click
the map for interview sources
in your state and region
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. Contact914-654-5418,
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 Tsomois 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 • The
Rev. Richard
H. Gentzler Jr. is the director of the Center
on Aging and Older-Adult Ministries for the General Board of Discipleship
of the United Methodist Church. The center provides resources and training for
leaders of midlife and older-adult ministries. He's the author of numerous books,
including The Graying Church and Aging: God's Challenge to Church
and Synagogue. Contact 615-340-7173, rgentzler@gbod.org. • The
Supportive
Care Coalition, which has headquarters in Portland, Ore., is a coalition
of Catholic health systems dedicated to improving end-of-life care, both in
their own facilities and in the nation at large. The executive director is Sister
Karin Dufault. Contact 503-215-5053, karin.dufault@providence.org. • The
National Catholic Bioethics
Center in Philadelphia conducts “education, research, consultation, and
publishing to promote and safeguard the dignity of the human person in health
care and the life sciences” and is “unique among bioethics organizations in
that its message derives from the official teaching of the Catholic Church.”
John M. Haas is president. Contact 215-877-2660 ext. 206, drjohnhaas@aol.com. • The
Center for Bioethics
& Human Dignity in Bannockburn, Ill., strives to “equip thought leaders
to engage the issues of bioethics using the tools of rigorous research, conceptual
analysis, charitable critique, leading-edge publication, and effective teaching.”
Formed by a group of Christian bioethicists, it recognizes “that biblical values
have exercised a profound influence on Western Culture [and] explores the potential
contribution of such values as part of its work.” The director is C.
Ben Mitchell, a professor of bioethics and contemporary culture at Trinity
International University in Deerfield, Ill., and editor of Ethics
& Medicine: An International Journal of Bioethics. Contact through Danielle
Morrow, 847-345-7248, media@cbhd.org. • The
National Council of Churches
issued a 2000 study document called “Assisted
Suicide and the Quality of Life of Persons with Disabilities.”
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.
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
Kennedy
Institute of Ethics, the oldest academic bioethics center (see its scholars); • the
National
Bioethics Library; • the
National
Reference Center for Bioethics Literature the world’s largest collection
of information on biomedical ethics; • The
National
Information Resource on Ethics and Human Genetics, funded by the National
Human Genome Research Institute of the National Institutes of Health; • The
Center for
Clinical Bioethics, established in 1991 at Georgetown University Medical
Center as a university-based bioethics resource for those who shape and give
health care. Contact 202-687-0100.
• 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.
