A biting wind blows through the darkened Yale campus on a cold December night. The irony of the end-of-the-year gloom is not lost on the 25 members of the End-of-Life Issues working research group meeting in a seminar room at the Institution for Social and Policy Studies (ISPS). This night, four staff members from the Connecticut Hospice in Branford speak about the stresses faced by caregivers for the dying. The audience is composed of students; faculty from the medical, divinity and nursing schools, as well as faculty from other academic institutions; and local community members.
During the discussion that follows, Fred A. Flatow, M.D., a former oncologist who is now a hospice physician, notes the challenge that doctors newly arrived from traditional hospital settings frequently encounter switching from one mode of care to another. “They are always looking to treat a disease,” he said. “We tell them they have to treat the patient, not the disease.” The group then launched into a debate over the differing and sometimes conflicting emotional qualities and approaches to patients that caregivers need to succeed in each medical setting.
That sort of investigation into the nature and impact of medical care and research goes on somewhere on campus almost every day. The group meeting this evening is just one of 15 different working research groups, in bioethics that hold monthly meetings on topics ranging from technology and ethics to allocation of health care. The various groups as well as publications, seminar and speaker series and visiting professors, are part of the burgeoning Interdisciplinary Bioethics Project at Yale.
Launched in the summer of 1997 by the ISPS to bring together the swelling numbers of people interested in the field, the bioethics project has drawn more than 500 participants to its programs from departments across the university, the local community and the larger world of academia and health care. “The project is fluid and that accounts for its popularity,” says Carol A. Pollard, associate director of the bioethics project at the ISPS, who coordinates the project’s many activities. “People come to ask why we don’t do something in an area with an underlying ethical question. They can then work with us to make it happen.”
Those efforts received a major boost last year when the Patrick and Catherine Weldon Donaghue Medical Research Foundation awarded the Bioethics Project a five-year, $2.1 million grant. According to Robert J. Levine, M.D., HS ’63, professor of medicine, and Divinity School Professor Margaret A. Farley, Ph.D., co-chairs of the Bioethics Project, part of those funds will go toward community outreach, including a statewide network of institutional review boards, the hospital and medical center ethics watchdog committees that oversee biomedical and behavioral research. The grant also helps to bring a prominent bioethicist-in-residence to Yale each school year. This year’s visiting faculty member is David H. Smith, Ph.D., a professor of religious studies at Indiana University, where he is immediate past director of the Poynter Center for the Study of Ethics and American Institutions. He is currently at work on a book on religion and the morality of care for the dying. At Yale, he is teaching popular courses to undergraduate and graduate students on bioethics and also directs the End-of-Life Issues working research group for the year.
Many of the working groups focus on policy issues and have become voices in wider public debates. “It is in the nature of biomedical ethics,” says Levine, “that almost anything is potentially related to public policy.”
Several of the Bioethics Project’s groups have taken on a life of their own, developing their own visiting-speaker series and seeking outside support for their efforts. One of the larger groups, the Stem Cell Interest Group, was founded in May 2002 by medical student Rajesh Rao with stem cell scientist Diane S. Krause, M.D., Ph.D., associate professor of laboratory medicine and pathology, as an advisor. The group has grown from 15 to 150 members from a wide range of disciplines. It has brought speakers to Yale including leading stem cell investigators and Christopher Reeve, an advocate for more research in the field. The group now hopes to establish a multidisciplinary program, with medical and ethical research and education as components.
Most of those involved in the working groups are not formally trained as bioethicists. Interim Dean Dennis D. Spencer, M.D., HS ’77, who attends meetings of various study groups, has spoken on bioethics as part of an annual guest lecture series on the field held at the Joseph Slifka Center for Jewish Life at Yale. “I am not a bioethicist per se,” he says, “but as a neurosurgeon, I’m engaged in it in the trenches. Most of us consider ethics to be common sense. All you need to do is ask a resident a tough ethical question and you see that it is not just common sense. We all bring baggage and a set of beliefs that you have to get rid of in approaching these issues. You have to acquire a basis to argue your views rationally.”
A member of the End-of-Life Issues group, Stanley H. Rosenbaum, M.D., professor of anesthesiology, medicine and surgery, agrees. “I spend so much energy dealing with acute medical problems. This helps me step back and consider the justice and ethical aspects of what we do.”