The death of Dr. Jack Kevorkian, a former pathologist who helped dozens of terminally ill people die with a suicide machine, has renewed a national debate on end-of-life issues that never went away completely, even after Kevorkian was sentenced to prison in 1999.
In fact, a Gallup poll in May found that physician-assisted suicide remains the most polarized moral issue in the country, with 45 percent saying it is morally acceptable and 48 percent saying it is morally wrong.
The Catholic bishops of the United States are set to wade into the debate this month when they consider adopting a document declaring the church’s opposition to physician-assisted suicide. The bishops say growing support for assisted suicide laws makes the document timely.
And the ferocity of the so-called “death panels” controversy during the health care reform debate remains so potent that in January the Obama administration reversed course on end-of-life counseling regulations due to concerns that passing the regulations would rekindle the furor.
Beyond the immediate reactions prompted by Kevorkian’s death, the debate over end-of-life issues can be traced to technological advances and new brain research, and also to questions being raised by believers, particularly in Catholicism and Judaism.
Pope Benedict XVI and Vatican officials have in recent years questioned whether “brain death” is an adequate marker to determine biological death. And Orthodox Judaism is currently embroiled in the “halachic death” debate, a passionate argument about whether “brain stem death” should be recognized under Jewish law. The outcome of these debates could affect organ donations by believers or when people die in Catholic or Jewish medical facilities.
The stakes are high, morally, psychologically and economically.
Caring for people in the final stages of life is one of the most expensive aspects of the nation’s health care system, accounting for as much as one-third of all health care costs, and about 30 percent of Medicare expenditures come in the last year of a patient’s life. Moreover, modern medicine is able to keep human beings — or at least their bodies — alive for increasingly long periods, often in what is known as a “persistent vegetative state,” or PVS.
This comes as the nation’s population continues to grow grayer, with the responsibility of providing for the terminally ill falling on the next generation, and on strained state and federal budgets.
All of these developments are posing increasingly complex challenges for religious traditions trying to adapt to new insights on the brain and new questions about consciousness and the moment of death. Ethicists also raise questions as to what is the moral use of limited health care resources — on helping the dying or saving the living.
This edition of ReligionLink provides resources for journalists covering this story.
Reactions to Kevorkian’s death
- Read a June 7 column by Washington Post blogger Ezra Kelin, “The argument for, and against, euthanasia,” that cites a 1997 article showing that terminally ill people in pain are less inclined to opt for assisted suicide.
- New York Times columnist Ross Douthat argued against physician-assisted suicide and that Kevorkian was guilty of murder.
- Kevin Drum of Mother Jones does not find Douthat’s arguments convincing.
- The New York Times obituary on Jack Kevorkian says his critics and supporters generally agree that “as a result of his stubborn and often intemperate advocacy for the right of the terminally ill to choose how they die, hospice care has boomed in the United States, and physicians have become more sympathetic to their pain and more willing to prescribe medication to relieve it.”
- The Washington Post obituary says that, “Though [Kevorkian] was the most well known figure in fighting for euthanasia’s legalization, the legislative results of his efforts were largely unsuccessful, if not counterproductive.”
- Read the Associated Press obituary for Kevorkian.
- Read William Saletan’s essay in Slate about Kevorkian and his own father’s recent death to cancer: “Kevorkian didn’t have the answers,” he writes. “But he raised the right questions.”
- In May 2011, the Gallup Poll reported that doctor-assisted suicide is the moral issue that divides Americans most.
- Read a June 2 Catholic News Service story about the mid-June meeting of the Catholic hierarchy, “Bishops’ document on assisted suicide will be first by full conference.”
- Read a June 6 “Personal Health” column in The New York Times about a New York State law, the Palliative Care Information Act, that requires doctors to offer to discuss end-of-life care with terminally ill patients. California passed a similar law in 2009 and other states are considering similar measures.
- The University of Miami’s second Global Business Forum, held Jan. 12-14, 2011, explored “The Business of Health Care: Defining the Future” and included a panel titled “Care Models, Economics and Ethics of End of Life Decision Making.”
- On Jan. 6, 2011, the Obama administration reversed course on end-of-life counseling regulations due to concerns that they would revive the “death panels” controversy.
- In November 2010, the Rabbinical Council of America, the central body of Modern Orthodox rabbis in the U.S., circulated a detailed report raising questions as to whether the organization’s longstanding acceptance of brain stem death as a definition of death comported with Jewish law. A majority of Jewish legal scholars cited said death was defined by the cessation of breathing and heart beats, and a minority said brain death was the defining factor. A conference in Jerusalem in early January 2011 debated the brain-versus-breathing parameter. The issue has been in the news in Israel since Israeli soccer legend Avi Cohen was left brain dead after a December motorcycle accident. His bodily functions ceased after eight days, and his family retreated from a previous commitment to donate his organs despite being given approval to do so by Israel’s chief Sephardic rabbi.
- Research reported in the February 2010 edition of The New England Journal of Medicine indicates that some individuals with brain damage previously thought to prevent thought, consciousness and communication in fact possess previously unsuspected levels of awareness. Even if aided by advanced technology, they have the ability to answer questions accurately. Experts caution that this dealt with a small percentage of patients in PVS and that hopes for a recovery for these patients were vanishingly small.
- In November 2009 the Catholic bishops of the United States issued guidance to Catholic hospitals banning the removal of nutrition and hydration from patients who would survive if they were provided. That has raised concerns that advance directives could be ignored in Catholic hospitals if they conflict with Catholic policies. There are more than 600 Catholic medical facilities in the United States, the largest single private provider of health care in the country.
- Catholic teaching on the definition of death and the ethics of organ harvesting appears to be in flux. In the latter half of 2008 the issue came to the fore when the Vatican newspaper published a front-page column calling for a re-examination of the definition of brain death. Subsequently, Pope Benedict XVI delivered an address to a Vatican conference on organ donation in which he said that “where certainty has not been reached the principle of precaution must prevail.”
- In October 2009, Nature magazine published an editorial calling for a “realistic definition of life’s end” in order to facilitate the harvesting and donation of organs, among other things. The editorial sums up the current laws and policies and the state of the debate.
- Read “Caution urged after study on brain activity by ‘vegetative’ patients,” a March 3, 2010, story by Catholic News Service.
- Read a Feb. 27, 2010, article from Kaiser Health News, “Catholic Directive May Thwart End-Of-Life Wishes.”
- Read “When Are You Dead? Science Just Made the Work of Religion a Bit More Difficult,” a Feb. 16, 2010, column by By Arri Eisen at ReligionDispatches.org.
- Read a Feb. 3, 2010, New York Times article, “Trace of Thought Is Found in Vegetative Patient,” that discusses the results of the new brain imaging study.
- Read the abstract of “Willful Modulation of Brain Activity in Disorders of Consciousness” in the February 2010 New England Journal of Medicine.
- Read “Ethical and Religious Directives for Catholic Health Care Services” (PDF file) issued Nov. 17, 2009, by the United States Conference of Catholic Bishops.
- See an Oct. 9, 2009, report from Religion & Ethics Newsweekly, titled “End of Life Decisions,” that explores these issues.
- Read the October 2009 Nature magazine editorial, “Delimiting death.”
- See the text of Pope Benedict XVI’s Nov. 7, 2008, address on organ donation and defining death.
- Read an Oct. 3, 2008, article in the online magazine Slate, “Undead Babies: The retreating boundaries of organ harvesting.”
- Read an overview of end-of-life issues from the National Institutes of Health.
- Read about end-of-life issues from the University of Washington’s Ethics in Medicine program.
- Read about legal and ethical issues in dying and about end-of-life preferences that differ by race and gender, both from the AGS Foundation for Health in Aging.
- Read a March 2007 ReligionLink edition on the second anniversary of Terri Schiavo’s death, “Who has the right to end a life?”
Americans last engaged in widespread public discussion about the emotional topic of people in a “persistent vegetative state” in 2005, during the protracted and acrimonious national debate over the fate of Terri Schiavo.
At that time, Schiavo’s husband, Michael Schiavo, decided to remove the feeding tube that had kept the severely brain-injured woman alive — though unconscious and unresponsive –- for 15 years. Her parents strongly objected and took legal action to prevent the move. Michael prevailed after weeks of rancorous dispute that eventually involved national politicians as well as religious figures, ethical experts and, ultimately, the U.S. Supreme Court. Points of contention included whether and how Terri Schiavo had expressed her desires about her situation, whether her condition justified steps that would have the effect of ending her life, and who had the right to decide. The recent developments in medical technology and ethics involve each of these issues.
In the brain imaging study published in February 2010, British and Belgian researchers reported on studies of 54 persistently unconscious individuals. In five of these people, a brain-imaging machine revealed particular patterns of brain activity that occurred after researchers asked “yes” or “no” questions to the patients. “A small proportion of patients in a vegetative or minimally conscious state have brain activation reflecting some awareness and cognition,” the article states. The technique “may be useful in establishing basic communication with patients who appear to be unresponsive.” But an editorial in the Journal cautioned families of brain-injured patients against taking from these results any unfounded hope that the patients with severe brain injuries can improve.
During the Schiavo controversy, for example, Terri Schiavo’s parents maintained that she retained the possibility of brain activity and even of improvement in her condition. Autopsy results indicated, however, that damage to her brain was far too extensive for either possibility to have existed.
In November 2009, the nation’s Catholic bishops issued new guidelines on care of terminally ill patients in Catholic hospitals that tightened standards to prevent the actions taken in Schiavo’s case from occurring in institutions under church control. The new policies would make refusal or removal of feeding tubes and some other life-sustaining measures more difficult and, many observers believe, conflict with the desires — and even the legally valid directives — of some patients to have such measures ended or never begun. “In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally,” states the document, Ethical and Religious Directives for Catholic Health Care Services. “This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the “persistent vegetative state”) who can reasonably be expected to live indefinitely if given such care.”
These standards, however, differ sharply from the general practices of American hospitals, which permit end-of-life decisions that include withholding of nutrition and hydration if such comports with the express wish of the patient. Observers therefore predict the probability of conflict between the new guidance and the desires and decisions of many dying individuals and their families.
Here are some other issues at stake:
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.
Advance care planning – It is estimated that 75 percent of Americans do not have 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. In addition, questions are being raised about how the health-care system deals with both the physical pain and the existential and spiritual suffering of dying individuals.
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?
- Nancy Berlinger is deputy director and research scholar 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, firstname.lastname@example.org.
- Dr. James L. Bernat is professor of neurology and medicine at Dartmouth Medical School and heads the Bioethics Committee at Dartmouth-Hitchcock Medical Center in Lebanon, N.H. He is the author of Ethical Issues in Neurology, 3rd ed. Contact 603-650-5104, email@example.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, firstname.lastname@example.org.
- Dr. Christine Cassel is president and CEO of the American Board of Internal Medicine and the 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.
- Larry R. Churchill holds the Ann Geddes Stahlman Chair of Medical Ethics and directs the Center for Biomedical Ethics and Society 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, email@example.com.
- Arri Eisen is professor of pedagogy in biology and the Institute for Liberal Arts and in the Center for Ethics at Emory University. He is co-editor of Science, Religion and Society: History, Cultures and Controversies (2007) and also writes on science and religion for ReligionDispatches.org and the new CNN religion blog. Contact 404-727-4354, firstname.lastname@example.org.
- Dr. Joseph J. Fins is chief of the division of medical ethics at Weill Cornell Medical College 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.
- Marie T. Hilliard is director of bioethics and public policy and an ethicist at the National Catholic Bioethics Center in Philadelphia. Contact 215-877-2660 ext. 236, email@example.com.
- Joy Hirsch is a professor in the department of radiology and director of the Program for Imaging and Cognitive Sciences at Columbia University Medical Center in New York. Her group has used diagnostic technology to ascertain whether cognition and perception exist in patients unable to express themselves. Contact 212-342-0291, firstname.lastname@example.org.
- Sister Carol Keehan is president and chief executive officer of the Catholic Health Association of the United States in Washington, D.C. Contact 202-296-3993, email@example.com.
- 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, firstname.lastname@example.org.
- 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 512-232-1307, email@example.com.
- Dr. Allan Ropper is executive vice chair of neurology at Brigham and Women’s Hospital in Boston and a lecturer at Harvard Medical School. He wrote an editorial accompanying the article in the New England Journal of Medicine. Contact 617-732-8047.
- Stephen Sapp is a professor in the department of religious studies at the University of Miami and was a panelist discussing end-of-life ethics at the University Global Business Forum. Sapp is also the founding president of the South Florida chapter of the Alzheimer’s Association. Contact via email, firstname.lastname@example.org.
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, an associate 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, email@example.com.
The Rev. Richard H. Gentzler Jr. is director of the Center on Aging & 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 of the Church and Aging: God’s Challenge to Church and Synagogue. Contact 615-340-7173, firstname.lastname@example.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, email@example.com.
The National Council of Churches issued a 2000 study document called “Assisted Suicide and the Quality of Life of Persons With Disabilities.”
The Department of Jewish Family Concerns of the Union for Reform Judaism in New York City offers resources on end-of-life issues. Rabbi Richard Address is the director. Contact 212-650-4296.
The Rabbinical Assembly of Conservative Judaism provides a series of online teshuvot (answers) to end-of-life questions. The United Synagogue of Conservative Judaism has published Life and Death Responsibilities in Jewish Biomedical Ethics. It was edited by Aaron L. Mackler, who is a Conservative rabbi, an associate professor of theology at Duquesne University in Pittsburgh, an author and a bioethicist. Contact 412-396-6000, firstname.lastname@example.org.
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. Rasheed Ahmed is the executive director. Contact 630-932-0000, email@example.com.
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.
Major bioethics centers
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 Bioethics Research Library;
- 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.
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, firstname.lastname@example.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 Bill 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, email@example.com.
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, firstname.lastname@example.org.
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 website 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.
IN THE NORTHEAST
- David Cummiskey is a philosophy professor at Bates College in Lewiston, Maine. He specializes in medical ethics, including the right to die. Contact email@example.com.
- Dr. Thomas Duffy is a professor of medicine at Yale University School of Medicine in New Haven, Conn.; director of the Program for Humanities in Medicine; and chairman of the Working Group on End of Life Issues of Yale’s Interdisciplinary Center for Bioethics. Contact 203-785-4744, firstname.lastname@example.org.
IN THE EAST
- Elizabeth Chaitin is director of the medical ethics and palliative care services at the University of Pittsburgh Medical Center Shadyside. She is also on the faculty of the Consortium Ethics Program and is an ethics consultant for the Ethics Consultation Service for the Center for Bioethics and Health Law of the University of Pittsburgh. She is a co-author of Ethics in End of Life Decisions in Social Work Practice. Contact 412-623-6171, email@example.com.
- Carol Taylor is a senior research scholar at the Georgetown University Center for Clinical Bioethics, a professor of medicine and nursing at Georgetown University in Washington, D.C., and a Roman Catholic nun. Contact 202-687-4783, firstname.lastname@example.org.
IN THE SOUTHEAST
- William Allen holds law and divinity degrees and is associate professor and director of the Program in Bioethics, Law and Medical Professionalism at the University of Florida College of Medicine in Gainesville. Contact 352-273-5155, email@example.com.
- Raymond Whiting is a professor of political science at Augusta State University in Georgia and author of A Natural Right to Die: Twenty-Three Centuries of Debate. Contact firstname.lastname@example.org.
IN THE SOUTH
- Dr. David 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 502-852-2513, email@example.com.
- 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, firstname.lastname@example.org.
IN THE MIDWEST
- Jos V.M. Welie is a professor medical and dental ethics 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, email@example.com.
- Susan M. Wolf is McKnight Presidential Professor of Law, Medicine and Public Policy, as well as Faegre & Benson Professor of Law 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, firstname.lastname@example.org.
IN THE SOUTHWEST
- Robert Baird is a professor of philosophy at Baylor University in Waco, Texas, and co-editor of Caring for the Dying: Critical Issues at the Edge of Life. Contact 254-710-7373, Robert_Baird@baylor.edu.
- Stuart Rosenbaum is a philosophy professor at Baylor University in Waco, Texas, and co-editor of Caring for the Dying: Critical Issues at the Edge of Life. Contact 254-710-6361, Stuart_Rosenbaum@baylor.edu.
IN THE WEST/NORTHWEST
- 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 and the author of Integrity and Personhood: Looking at Patients From a Bio/Psycho/Social Perspective. Contact 916-635-7555, email@example.com.
- James Walter holds the Austin & Ann O’Malley Chair in Bioethics in 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. Contact 310-258-8621, firstname.lastname@example.org.