Dr. Jack Kevorkian dies, and the end-of-life debate is revived

The June 3, 2011, death of Dr. Jack Kevorkian, a former pathologist who helped dozens of terminally ill people die with a suicide machine, 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 2011 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.

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.

The stakes are high, morally, psychologically and economically.

This edition of ReligionLink provides resources for journalists covering this story.

Background

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?

Reactions to Kevorkian's Death

  • “The argument for, and against, euthanasia”

    Read a June 7, 2011, 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.

  • “Dr. Kevorkian’s Victims”

    Read a June 5, 2011, article from New York Times columnist Ross Douthat that argues against physician-assisted suicide and claims that Kevorkian was guilty of murder.

  • “Choosing Your Death”

    Read a June 6, 2011, column by Kevin Drum of Mother Jones. Drum responds to Ross Douthat’s criticism of Dr. Jack Kevorkian.

  • “Dr. Jack Kevorkian Dies at 83; A Doctor Who Helped End Lives”

    Read the New York Times June 3, 2011, obituary on Jack Kevorkian. The obituary says 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.”

  • “‘Dr. Death’ Jack Kevorkian dies at age 83”

    Read the June 3, 2011, Washington Post obituary on Jack Kevorkian. It 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.”

  • “Life After Kevorkian”

    Read William Saletan’s essay in Slate about Jack Kevorkian and his own father’s recent death to cancer: “Kevorkian didn’t have the answers,” he writes. “But he raised the right questions.”

Other developments

  • “Doctor-Assisted Suicide Is Moral Issue Dividing Americans Most”

    In May 2011, the Gallup Poll reported that doctor-assisted suicide is the moral issue that divides Americans most.

  • “Bishops’ document on assisted suicide will be first by full conference”

    Read a June 2, 2011, Catholic News Service story about the mid-June meeting of the Catholic hierarchy at which a document officially condemning physician-assisted suicide was up for discussion.

  • “Law on End-of-Life Care Rankles Doctors”

    Read a June 6, 2011, “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.

  • “Obama Admin. Reverses Course on End-of-Life Provision”

    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. Read about it in an article from Christianity Today.

  • “RCA Backs Off Stand On Brain Death For Transplants”

    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. Read about it in a Nov. 30, 2010, article from The Jewish Week.

  • “YU ethics expert censures rabbis over brain-stem death”

    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. Read about it in a Jan. 5, 2011, article from The Jerusalem Post.

  • “Willful Modulation of Brain Activity in Disorders of Consciousness”

    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.

  • “At the Vatican, not all voices are created equal”

    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. Read an article about the letter posted by the Catholic News Service.

  • “Pope slams human organ trade, warns on transplants”

    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.” Read about the address in an Nov. 7, 2008, article posted by Reuters.

  • “Delimiting Death”

    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.

Resources

National sources

  • Nancy Berlinger

    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. She is the author of After Harm: Medical Error and the Ethics of Forgiveness.

  • Dr. James L. Bernat

    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.

  • Arthur Caplan

    Arthur Caplan is a professor of bioethics and director of the division of medical ethics at New York University’s school of medicine. He co-edited Assisted Suicide: Finding Common Ground.

  • Larry Churchill

    Larry Churchill is a professor of medical ethics at Vanderbilt University Medical Center and a professor at the graduate department of religion at the Vanderbilt Divinity School in Nashville, Tenn. An expert on the justice and allocation of health care resources, he wrote Self-Interest and Universal Health Care: Why Well-Insured Americans Should Support Coverage for Everyone.

  • Arri Eisen

    Arri Eisen is director of the Program in Science and Society at Emory University’s Center for Ethics in Atlanta and a professor of pedagogy in the department of biology. Eisen teaches research ethics to faculty, undergraduates, graduate students, postdoctoral fellows and physicians. He researches the basic science of gene regulation and research ethics education. He is co-author of “The Absent Professor: Why We Don’t Teach Research Ethics and What to Do About It” (published in The American Journal of Bioethics) and co-editor of the  two-volume collection of essays titled Science, Religion and Society: An Encyclopedia of History, Culture and Controversy.

  • Dr. Joseph J. Fins

    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.

  • Marie T. Hilliard

    Marie T. Hilliard is director of bioethics and public policy and an ethicist at the National Catholic Bioethics Center in Philadelphia.

  • Carol Keehan

    Sister Carol Keehan is president and chief executive officer of the Catholic Health Association, which has worked to improve children’s health care coverage through a partnership with the Campaign for Children’s Health Care. Contact Fred Caesar.

  • Dr. Richard Payne

    Dr. Richard Payne is a professor of medicine and divinity at Duke University in Durham, N.C. He is an expert on end-of-life issues and Christianity.

  • John A. Robertson

    John A. Robertson holds the Vinson and Elkins Chair at the University of Texas School of Law in Austin. He has written and lectured widely on law and bioethical issues. His books include The Rights of the Critically Ill.

  • Dr. Allan Ropper

    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

    Stephen Sapp is a professor and former chairman of the department of religious studies at the University of Miami, a member of the Alzheimer’s Association’s Ethics Advisory Panel and founding president of the association’s South Florida chapter. He is also past chairman of the Forum on Religion, Spirituality and Aging of the American Society on Aging. He was a panelist discussing end-of-life ethics at the university’s 2011 Global Business Forum.

Organizations

Christian

  • Center for Bioethics and Human Dignity

    The Center for Bioethics and Human Dignity in Bannockburn, Ill., helps individuals and organizations address bioethical challenges, including end-of-life treatment, genetic intervention, euthanasia and reproductive technologies, from a Christian perspective. Its website contains articles with overviews on various topics in bioethics, some position statements, bibliographies and podcasts.

  • Richard H. Gentzler Jr.

    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.

  • National Catholic Bioethics Center

    The National Catholic Bioethics Center in Philadelphia conducts research and consultations in health care and life sciences in accordance with teachings of the Catholic Church. It consults on life science and medical issues with the Vatican, U.S. bishops, public policy-makers, hospitals and international organizations of all faiths. It publishes two journals, Ethics and Medics and The National Catholic Bioethics Quarterly.

Jewish

  • Rabbinical Assembly

    The Rabbinical Assembly is an international association of Conservative rabbis. It maintains a directory of Conservative synagogues in North America. Rabbi Julie Schonfeld is executive vice-president.

    The Rabbinical Assembly 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.

Muslim

  • Islamic Medical Association of North America

    The Islamic Medical Association of North America aims to provide a forum and resource for Muslim physicians and other health-care professionals, to promote a greater awareness of Islamic medical ethics and values among Muslims and the community at large, to provide humanitarian and medical relief and to be an advocate in health-care policy.

  • Abdulaziz A. Sachedina

    Abdulaziz A. Sachedina is a coordinator of the Islamic bioethics group of the International Association of Bioethics and is a professor of Islamic studies at the University of Virginia in Charlottesville. He contributed the entry on bioethics for The Oxford Dictionary of Islam.

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:

  • Kennedy Institute of Ethics

    The Kennedy Institute of Ethics is the oldest academic bioethics center. See a list of its scholars. Contact Kelly Heuer.

  • Bioethics Research Library

    The Bioethics Research Library at Georgetown University is part of the Kennedy Institute of Ethics. It has a multiformat collection of sources relevant to issues of ethics in science.

  • National Information Resource on Ethics and Human Genetics

    The National Information Resource on Ethics and Human Genetics is funded by the National Human Genome Research Institute of the National Institutes of Health. It is part of the Georgetown Bioethics Library at Georgetown University.

  • Center for Clinical Bioethics

    The Center for Clinical Bioethics was established in 1991 at Georgetown University Medical Center as a university-based bioethics resource for those who shape and give health care. Edmund D. Pellegrino is founding director.

    Contact: 202-687-1122.

Other major bioethics centers include:

  • Hastings Center

    The nonprofit Hastings Center in Garrison, N.Y., explores bioethics questions in health care, biotechnology and the environment. Recent research projects range from genetic paternity testing to newborn screening to palliative care. Susan Gilbert is the director of communications.

  • National Center for Bioethics in Research and Health Care

    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 United States Public Health Service Study on syphilis conducted at Tuskegee, Macon County, 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.

  • University of Minnesota’s Center for Bioethics

    The University of Minnesota’s Center for Bioethics was founded 21 years ago and is one of the leading research centers for bioethics, with 15 full- and part-time faculty. The center conducts original interdisciplinary research, offers educational programs and fosters public discussion through community outreach. The center focuses on the policy level, working closely with policy-makers, health-care professionals and university communities. Projects include the Genetics and Identity Project, Genetics in Primary Care: Ethical and Professional Challenges, African Genealogy and Genetics: Looking Back to Move Forward and Blueprint of the Body on the Human Genome Project.

  • University of Pennsylvania Center for Bioethics

    The University of Pennsylvania Center for Bioethics in Philadelphia is one of the pre-eminent bioethics centers in the United States, with more than 20 faculty. 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: 215-349-5964.

Regional sources

In the Northeast

  • Elizabeth Chaitin

    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.

  • David Cummiskey

    David Cummiskey is a philosophy professor at Bates College in Lewiston, Maine. He specializes in medical ethics, including the right to die.

  • Dr. Thomas Duffy

    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.

  • Carol Taylor

    Sister Carol Taylor is former director of the Center for Clinical Bioethics at Georgetown University. She also is a senior research scholar at the Kennedy Institute of Ethics and a professor of nursing at Georgetown. Her background is in philosophy, bioethics and nursing. She is experienced in caring for chronically and critically ill patients and their families.

In the South

  • William Allen

    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.

  • Robert M. Baird

    Robert M. Baird is a professor and chairman of the philosophy department at Baylor University in Waco, Texas. He co-edited the books Same-Sex Marriage: The Moral and Legal Debate, Caring for the Dying: Critical Issues at the Edge of Life, and The Ethics of Abortion: Pro-Life Vs. Pro-Choice.

    He is co-editor of Caring for the Dying: Critical Issues at the Edge of Life.

  • Dr. David Doukas

    Dr. David Doukas is a faculty member in the Institute for Bioethics, Health Policy and Law, and he holds the William Ray Moore Endowed Chair of Family Medicine and Medical Humanism at the University of Louisville. He is a co-author of Planning for Uncertainty: Living Wills and Other Advance Directives for You and Your Family.

    He is a co-author of Planning for Uncertainty: Living Wills and Other Advance Directives for You and Your Family.

  • Chris Hackler

    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.

  • Stuart Rosenbaum

    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.

  • Raymond Whiting

    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.

In the Midwest

  • Jos V.M. Welie

    Jos V.M. Welie is a professor of 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.

  • Susan M. Wolf

    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.

In the West

  • Roberta Springer Loewy

    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.

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