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Ethics in America II

Three Farewells: Medicine & the End of Life

This program looks at the difficult choices a loving family makes as they confront the end of life. When a perfect pregnancy ends in unforeseen complications, and the newborn suffers very severe brain injury, how should the parents decide what is best for their baby? When, a few years later, the baby's grandmother descends into dementia from Alzheimer's, should her earlier wish to forego all medical treatment be honored, even though she may no longer understand — or agree — with the statements she made when she was competent? Still later, another family member receives a diagnosis of pancreatic cancer. If she is terminally ill, should she be able to avail herself of medications to aid her in dying?

“Three Farewells” looks at the difficult and sometimes heart-rending choices a loving family makes as they confront the end of life.

Our story begins with Hope, literally and figuratively. Hope is the name Faith and her husband picked out for the baby they were having if it were a girl. For Faith’s mother, Charity, still in her fifties, becoming a grandmother would take a little getting used to. But the pregnancy went perfectly. And, at forty weeks on the dot, Faith went into labor. Then something went wrong. On the way into the hospital there was a prolapse of the umbilical cord, cutting off oxygen to the unborn baby. At the hospital, everything that could be done was done; but now Baby Hope is on a respirator, her brain waves are very weak, and she shows no response to anything. How should the parents decide what is best for Baby Hope now?

A few years later, the baby’s grandmother Charity learns that she is in the early stages of Alzheimer’s disease. Always a strong, independent person, Charity asks her husband to promise her that, if she can no longer remember her family, nothing at all should be done to prolong her life. Five years later, Charity doesn’t know what day it is, what she used to do for a living, or who the president is. She doesn’t recognize her husband, her daughter, or anyone else. Then Charity has a small stroke. She recovers from it, and while she can no longer speak, her other abilities and her attitude toward life seem unchanged. There is just one problem. Because of the stroke, she can no longer swallow. She can only receive food through a feeding tube. The doctors ask the husband’s permission to insert the tube. If Charity’s husband follows the wishes Charity expressed when she was competent, then he would refuse to have the tube inserted, and Janice would die. But Charity’s daughter Faith says that Charity recently expressed a fear of dying, and says that Charity still enjoys some simple pleasures. Faith says that Charity now would not want to die. What should Charity’s husband do?

Eventually, Charity dies. A few years later, there is still more tragedy in Faith’s life. Faith develops pancreatic cancer. For Faith, this is the last straw. She tells her physician that she is willing to try treatment, but that if it’s unsuccessful, she wants control over what will happen to her. Faith’s state has passed a law similar to Oregon’s Death with Dignity Act, and she wants to get a prescription from her doctor that would allow her to end her life. What should the doctor do?

This program looks at the difficult choices a loving family makes as they confront the end of life. When a perfect pregnancy ends in unforeseen complications, and the newborn suffers very severe brain injury, how should the parents decide what is best for their baby? When, a few years later, the baby’s grandmother descends into dementia from Alzheimer’s, should her earlier wish to forego all medical treatment be honored, even though she may no longer understand — or agree — with the statements she made when she was competent? Still later, another family member receives a diagnosis of pancreatic cancer. If she is terminally ill, should she be able to avail herself of medications to aid her in dying?

Credits

EXECUTIVE PRODUCER
Richard Kilberg

PRODUCER
Barbara Margolis

WRITER
Joan Greco

SENIOR EDITORIAL DIRECTOR
Ruth Friendly

BROADCAST PRODUCER/DIRECTOR
Mark Ganguzza

EDITOR
Rob Forlenza

ASSOCIATE PRODUCERS
Jason Steneck
Ann Yoo

SCENIC DESIGN
H. Peet Foster

LIGHTING DESIGN
Dan McKenrick

SENIOR AUDIO ENGINEER
Bob Aldridge

ETHICS CONTENT ADVISOR
Lisa H. Newton, Ph.D.

PROGRAM CONTENT ADVISOR
Alan R. Fleischman, M.D.

AUDIENCE COORDINATOR
Rachel Ward

SPECIAL THANKS
Molly Collins
Ahmad Corbitt
Anne Hansen
Herbert Hendin
Robert L. Klitzman
David Leven
Betty Wolder Levin
John Lorenz
Anne Pearl
Kathy Powderly

Meet the Participants

Arthur Miller (Moderator)
Marcia Angell
Daniel Brookoff
Deborah Campbell
Arthur Caplan
Kenneth L. Connor
Melinda Delahoyde
Barney Frank
Diane Hoffmann
Dallin H. Oaks
John J. Paris
Denise V. Rodgers
David Satcher
Kathryn Tucker

Moderator

Arthur Miller Arthur Miller
Professor of Law
Harvard Law School 
Arthur Miller is the Bruce Bromley Professor of Law at Harvard Law School. He is nationally known for his expertise on the right of privacy. Professor Miller has been a moderator on many Fred Friendly Seminars series, including the recent programs “Our Genes/Our Choices: Who Gets to Know?”; “Disconnected: Politics, the Press and the Public”; “Epidemic!”; “Before I Die: Medical Care and Personal Choices.” Previous series include Liberty & Limits: Privacy and Security on the Eve of the MillenniumThe Constitution: That Delicate BalanceEthics in AmericaIn the Face of Terrorism; and That Delicate Balance II: Our Bill of Rights.

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Panelists

Marcia Angell Marcia Angell
Former Editor in Chief
New England Journal of Medicine
Senior Lecturer
Harvard Medical School
Marcia Angell, M.D., is senior lecturer in the Department of Social Medicine at Harvard Medical School and former editor in chief of the New England Journal of Medicine. A graduate of Boston University School of Medicine, she trained in both internal medicine and anatomic pathology and is a board-certified pathologist. Dr. Angell writes frequently in professional journals and the popular media on a wide range of topics, particularly medical ethics, health policy, the nature of medical evidence, the interface of medicine and the law, and care at the end of life. In 1997, Time magazine named Marcia Angell one of the 25 most influential Americans.

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Daniel Brookoff Daniel Brookoff
Attending Physician
Integrative Treatment Centers 
Daniel Brookoff, M.D., was an assistant professor of medicine at the University of Pennsylvania where he was one of the founding physicians of the AIDS Clinic. He went on to join the faculty of the University of Tennessee College of Medicine in Memphis. His major clinical interest has been in the continuing care of people with chronic pain. He was associate director of the Methodist Hospice and one of the founders of Aloysius Home, a hospice for people with AIDS in Memphis. He has written articles and textbook chapters on pain management, drug abuse, and domestic violence. He is currently affiliated with Integrative Treatment Centers, a large multidisciplinary clinic in Denver focused on the treatment of chronic pain.

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Deborah Campbell Deborah Campbell
Director of Neonatology
Montefiore Medical Center 
Deborah Campbell, M.D., is director of the Division of Neonatology at the Children’s Hospital at Montefiore, and professor of clinical pediatrics at Albert Einstein College of Medicine. Her research activities have focused on regionalization of perinatal care and health services delivery, psychosocial support interventions for mothers of premature babies, perinatal ethics, outcomes for infants with very low birth weight, and newborn hearing screening. She is the current chair of the American Academy of Pediatrics Section on Perinatal Pediatrics and is active on the NYC Local Early Intervention Coordinating Council and the Greater New York March of Dimes Health Professional Advisory Board.

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Arthur Caplan Arthur Caplan
Director
Center for Bioethics
University of Pennsylvania
Art Caplan is currently the Emmanuel and Robert Hart Professor of Bioethics, chair of the Department of Medical Ethics, and the director of the Center for Bioethics at the University of Pennsylvania in Philadelphia. Prior to coming to Penn in 1994, Caplan taught at the University of Minnesota, the University of Pittsburgh, and Columbia University. He was the associate director of the Hastings Center from 1984 to 1987. He is the author or editor of 25 books and over five hundred papers in refereed journals of medicine, science, philosophy, bioethics, and health policy. He is the coeditor of The Case of Terri Schiavo: Ethics at the End of Life.

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Kenneth L. Connor Kenneth L. Connor
Attorney
Wilkes & McHugh, P.A.
Chairman
Center for a Just Society
Kenneth L. Connor received his B.A. and his J.D. from Florida State University in 1969 and 1972, respectively. He serves as chairman of the Center for a Just Society and served on Florida’s Task Force on the Availability and Affordability of Long Term Care. He also served on Florida’s Constitution Revision Commission, where he was recognized as best debater. Mr. Connor represented Governor Jeb Bush in connection with the Terri Schiavo case. He has been selected for inclusion in the Best Lawyers in America and was recently named as one of Florida’s “Legal Elite,” a select group comprising the top 2 percent of lawyers practicing in the state.

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Melinda Delahoyde Melinda Delahoyde
Board Chair
Care Net
In addition to being a wife and mother of four children, including one child with Down’s syndrome, Melinda Delahoyde is a writer and long-time leader and volunteer for a number of nonprofit organizations focused on life and bioethics issues. She led the educational outreach for Americans United for Life and later joined Care Net, an organization that supports a network of nine hundred pregnancy resource centers, which help women facing unplanned pregnancy find alternatives to abortion. At Care Net, she has served as director of special projects and is currently the chairman of the board of directors. She graduated from the University of California, Irvine, with a B.A. in philosophy and received an M.A. in philosophy of religion from Trinity Divinity School.

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Barney Frank Barney Frank
U.S. Congressman (D-MA)
Barney Frank is a member of the United States House of Representatives. He is a Democrat and has represented the 4th District of Massachusetts since 1981. Frank is the most prominent openly gay politician in the United States. He received his B.A. from Harvard College, graduating in 1962. He taught undergraduates at Harvard while studying for a Ph.D, but left in 1968, before completing that degree, to become the chief assistant to Mayor Kevin White of Boston, a position he held for three years. In 1972, Frank was elected to the Massachusetts legislature, where he served for eight years. During that time, he entered Harvard Law School and graduated in 1977. In 1979 he became a member of the Massachusetts Bar, before being elected to Congress in 1980. He has published numerous articles on politics and public affairs, including Speaking Frankly in 1992.

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Diane Hoffmann Diane Hoffmann
Director
Law and Health Care Program
University of Maryland School of Law 
Diane Hoffmann is associate dean for academic programs and director of the Law and Health Care Program. Her research interests include issues at the intersection of law, health care, ethics, and public policy such as advance directives, pain treatment, termination of life support, genetics, and regulation of research and managed care. She was a primary author of Maryland’s Health Care Decisions Act dealing with advance directives, surrogate decision making, and guardianship for individuals lacking health-care decision-making capacity. She has served as a member of a number of ethics committees, including those at University of Maryland Medical Systems, the National Institutes of Health in Bethesda, and the VA Medical Center in Baltimore.

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Dallin H. Oaks Dallin H. Oaks
Member
Quorum of Twelve Apostles
Church of Jesus Christ of Latter-day Saints
Former Justice
Utah Supreme Court
Elder Dallin H. Oaks has served as a member of the Quorum of the Twelve Apostles of the Church of Jesus Christ of Latter-day Saints since May 1984. He was a professor of law at the University of Chicago from 1961 to 1971, president of Brigham Young University from 1971 to 1980, and a justice of the Utah Supreme Court from 1980 until his resignation in 1984 to accept his calling to the apostleship. He was also chairman of the Board of the Public Broadcasting Service from 1980 to 1985. Elder Oaks is a native of Provo, Utah. He and his late wife, June Dixon Oaks, are the parents of 6 children, 28 grandchildren, and 6 great-grandchildren. She died in 1998. In 2000 he married Kristen M. McMain.

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John J. Paris John J. Paris
Professor of Bioethics
Boston College
Reverend John J. Paris, S.J., is the Walsh Professor of Bioethics at Boston College. He has served as consultant to the President’s Commission for the Study of Ethics in Medicine, the United States Senate Committee on Aging, and the Congressional Office of Technology Assessment. He has published over 150 articles on the area of law, medicine, and ethics and has served as a consultant and expert witness in many of the landmark biomedical cases, including Quinlan, Brophy, Jobes, Baby K., and Gilgunn.

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Denise V. Rodgers Denise V. Rodgers
Chief of Staff
University of Medicine and Dentistry of New Jersey
Denise Rodgers, M.D., is the chief of staff for the University of Medicine and Dentistry of New Jersey as well as professor of family medicine at the UMDNJ–Robert Wood Johnson Medical School. Dr. Rodgers has published and lectured extensively about excess mortality in minorities, racism in medicine, cultural competency, and medical education in settings that care for the underserved. Before coming to RWJMS in 1997, Dr. Rodgers was professor and vice chair in the Department of Family and Community Medicine at the University of California, San Francisco (UCSF). She also served as director of the UCSF–San Francisco General Hospital (SFGH) Family Practice Residency Program and chief of service of family and community medicine at SFGH. She is a former president of the Society of Teachers of Family Medicine and is the mother of one child.

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David Satcher David Satcher
Interim President
Morehouse School of Medicine
16th U.S. Surgeon GeneralDirector
Center of Excellence on Health Disparities
David Satcher, M.D., Ph.D., completed his four-year term as the 16th U.S. surgeon general in February 2002. Simultaneously, Dr. Satcher served as the assistant secretary for health, making him the second person in history to do so. During his term, Dr. Satcher led the effort to eliminate racial and ethnic disparities in health, which was incorporated as a major goal of Healthy People 2010.

Dr. Satcher currently serves as the interim president of the Morehouse School of Medicine (MSM) and the director of the Centers of Excellence on Health Disparities. Formerly, Dr. Satcher served as the director of the National Center for Primary Care at MSM.

From 1993 to 1998 Dr. Satcher served as the director of the Centers for Disease Control and Prevention (CDC) and administrator of the Agency for Toxic Substances and Disease Registry. Dr. Satcher served as president of Meharry Medical College in Nashville, Tennessee, from 1982 to 1993.

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Kathryn Tucker Kathryn Tucker
Director
Legal Affairs Compassion & Choices
Kathryn L. Tucker is director of legal affairs for Compassion & Choices, a national nonprofit public interest organization dedicated to improving end-of-life care and expanding and protecting the rights of the terminally ill. She is adjunct professor of law at the University of Washington School of Law and Seattle University School of Law, teaching in the areas of health law and constitutional law. She has successfully defended the Oregon Death with Dignity Act from attacks from the federal legislature and the United States Department of Justice. Ms. Tucker was a principal author of legislation requiring pain management education of all licensed physicians passed by the California legislature in 2001. Ms. Tucker also defends physicians facing adverse consequences for treating pain attentively and aggressively.

View Program and Text Highlights

The video highlight shows our panelists in action. The Discussion Guide frames their debates in contemporary terms, while the Ethics Reader grounds the discussion in the philosophy of the past.

In this video highlight, a picture-perfect pregnancy ends tragically when the baby’s umbilical cord becomes compressed during birth, cutting off oxygen and depriving the unborn baby of nutrients. At the hospital, everything that could be done was done; but now Baby Hope is on a respirator, her brain waves are very weak, and she shows no response to anything. The panelists assume hypothetical roles. As Hope’s mother and father, Melinda Delahoyde and Art Caplan fight to keep the baby alive on the ventilator, despite her lack of responsiveness. Others, such as Dr. Marcia Angell, argue that since Hope has no higher brain function, she has no best interests. How should the parents decide what is best for Baby Hope now?

Read Text Highlights

Framing This Discussion (from the Discussion Guide)

It used to be thought that a baby lacking basic human attributes like speech, laughter, curiosity, and love was not really human. About 25 years ago, the philosophers who specialized in medical ethics, or bioethics as it is called, moved away from that line of thinking. Of course the impaired baby, described above, is human. She has not transformed into some animal, nor, despite the popularity of the phrase “vegetative state,” into some vegetable. The question is not, What is she? let alone, Is she worth saving? But rather, What sort of medical interventions are appropriate for her, given her medical condition?

The answer implied by current medical practice is to offer interventions that promise benefit for the baby proportionate to the burden of the treatment, interventions limited to support for breathing on a ventilator, feeding tubes, kidney dialysis, surgery, and the like. This is straightforward and wise, but as the discussion in the clip demonstrates, often difficult to apply.

For a deeper examination of the analysis abridged here, see the Discussion Guide.

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Philosophical Grounding of This Discussion (from the Ethics Reader)

Would the Greeks intervene in the case of Baby Hope? The Hippocratic Oath has set the standard for medical ethics since the fifth century B.C., binding all physicians who made the pledge. The following passage is an excerpt from the Oath.

I will apply dietetic measure for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice. I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect. Similarly I will not give a woman an abortive remedy. In purity and in holiness I will guard my life and my art. I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.

To read selections from philosophical texts relevant to this program, see Ethics Reader.

Read Related Articles

Improving End of Life Care
A Hastings Center Special Report

This collection of essays examines issues surrounding end of life care, including the place of death and dying in modern medicine and conflicts over decision-making at the end of life. A list of end of life care resources is provided.

 

End of Life Care: A Human Rights Issue
Kathryn L. Tucker

Why does the undertreatment of pain during the end of life remain a routine problem in the United States? What legal and institutional steps must be taken to help the medical establishment fulfill its responsibilities to dying patients?

 

The Supreme Court and Physician-Assisted Suicide�The Ultimate Right
Marcia Angell, M.D.

What are the arguments against physician-assisted suicide, and why might they be unpersuasive? Should physician-assisted suicide be legalized?

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