CU death-and-dying discussion transcends disciplines, campuses

By Franklin Crawford

Dr. Joseph Fins, chief of the Medical Ethics Division at Weill Cornell Medical College, paid a scholarly house call to the Cornell campus Feb. 19 to deliver a talk titled "Back to the Future: Cultures of Death and Dying in America."

Cornell faculty panelists, from left, Erin McLeary, visiting assistant professor in the Department of Science and Technology Studies; Michele Moody-Adams, director of the Program on Ethics and Public Life; and keynote speaker Dr. Joseph Fins, chief of the Division of Medical Ethics at Weill Cornell Medical College, take part in a discussion following Fins' talk in the A.D. White House, Feb. 19. Nicola Kountoupes/University Photography

Fins (Cornell M.D. '86), who also is professor of medicine, public health and medicine in psychiatry at Weill Cornell and director of medical ethics at NewYork-Presbyterian Hospital/Weill Cornell Medical Center, addressed an audience of about 60 in the A.D. White House, including a panel of five faculty members who gave brief responses to various points raised during Fins' presentation.

The lecture was part of a new interdisciplinary colloquium series, launched last week by the Society for the Humanities at Cornell (SHC), called "Humanism at the Cross Roads," a collaboration among faculty members at Cornell's Ithaca campus and the Weill Cornell Medical College in New York City. Brett de Bary, SHC director, introduced the guest speaker.

Fins, a passionate advocate for public dialogue on dying and end-of-life health care, then gave a compelling presentation, which was something of a primer on key principles in healthcare ethics.

"These are really strange times for death and dying in America," said Fins. "After decades of expanding rights and prerogatives at the end of life," laws that defended these newly won rights seem to be devolving, he said.

Fins retraced the legal and medical history of patient healthcare in America from informed consent to the emergence of the death and dying movement and palliative care, such as hospice. Today, he said, "a cultural backlash" is eroding patient's rights achievements of the 20th century.

Fins gave special focus to the complex ethical issues surrounding care for the severely injured and terminally ill and discussed the growing pains and divisions within the "death and dying movement" in America, of which he is an active participant. He also explored the medical, legal, social, political and all-too-human aspects of landmark right-to-die cases, from Karen Ann Quinlan in 1976 to the recent Terry Shiavo case in Florida.

Shiavo is the subject of a bitter right-to-die case that gained national attention in October 2003 when Florida Gov. Jeb Bush and the state's House and Senate overrode court rulings to allow the removal of Shiavo's feeding tube at the request of her husband, Shiavo's legal guardian. Shiavo's parents fought the decision. A campaign was launched, using an Internet picture of an apparently conscious Shiavo with her mother, to garner public support for the bill. After life support was cut off for a week, Shiavo's feeding tube was replaced. But the debate is not over and the ramifications of the Florida ruling have far-reaching ramifications for patient self-determination.

"[The public] was asked to make a diagnosis ... Jeb Bush intervened and a doctor became an instrument of the state," by replacing the feeding tube, Fins said. "We shouldn't turn a diagnosis into a value judgment, though each of us can place different values on differing brain states." Fins added that Bush's action was a "tragic intervention."

Central to such cases, Fins said, is the neurological classification of a patient in a "permanent vegetative state" versus someone who is "minimally conscious." Shiavo was diagnosed as being in a permanent vegetative state, but the picture posted on the Internet gave the impression "that she was conscious when she was not," he said. Fins worries that this action undermines the integrity of the diagnosis process and will undermine the care of patients with severe brain injury who are, in fact, minimally conscious and not vegetative. He called that distinction "a difference that makes a difference."

The Shiavo story is extremely complicated, involving law, science, technology, religion and the role of the state. But Fins said it also threatened to set the death and dying movement on its head and threatens our individual right to "construct the narrative of our own deaths and our [right] to be the author of that narrative."

Following Fins' presentation, five Cornell faculty panelists responded: Michelle Moody-Adams, professor of philosophy and director of Cornell's Ethics and Public Life Program; Erin McLeary, visiting assistant professor in the Department of Science and Technology Studies; Trevor Morrison, assistant professor in the Law School; Barry Maxwell, senior lecturer in the Department of Comparative Literature and the American Studies Program; and Shirley Samuels, professor in the Department of English and the American Studies Program.

After the discussion, Robert Smith, Catholic chaplain at Cornell United Religious Work, observed that "how our culture creates itself in response to death is a subject where all the languages of medicine, law, science, religion, history and poetry converge. Because, in the end, all the ways we see it and talk about it need to be heard."

Fins concurred and said such multidisciplinary public forums are vital, and he said he looks forward to future dialogues between the two campuses.

"It certainly was energizing from my perspective," Fins said. "I think the university and the medical college are both ripe for a tremendous re-engagement that enriches and deepens the quality of not only ethical deliberations but scientific discourse as well."