Daniel Sulmasy is used to wearing many different figurative outfits, from the white coat he wears as a physician at the University of Chicago Medical Center to the brown robe he dons after work as a Franciscan friar. Now, Sulmasy will have another important role in his wardrobe as a member of President Obama’s Commission for the Study of Bioethical Issues. The 12-member committee was formed by Obama last fall to replace the Bush Administration’s Presidential Council on Bioethics, and will advise the president on forthcoming issues in science and medicine.
“This is quite an honor and a pleasant surprise,” Sulmasy said of the appointment. “I testified in 2006 to a previous presidential ethics council, but I never expected to become a member of such a group.”
Sulmasy, the associate director of the McLean Center for Clinical Medical Ethics, becomes the latest University faculty member to moonlight as ethical advisor to a president. The Medical Center’s Leon Kass and Janet Rowley both played prominent roles on the panel assembled by President George W. Bush, that most famously informed his decision to limit federal funding on stem cell research. On Obama’s panel, announced today, Sulmasy’s unique background as doctor and friar stands out among a panel made up of scientists, doctors, lawyers, and Muhammad Ali’s wife (an advocate for Parkinson’s disease). With experience in both religious and medical spheres, and an accomplished ethics background, Sulmasy should be a valuable voice for a panel that will have to wrestle with the difficult questions orbiting scientific advances in genomics, biotechnology, stem cell research and health care in the coming years.
One issue that may immediately be put before the panel is Sulmasy’s area of expertise: end-of-life care. The decision-making process between terminally-ill patients and their doctors was distorted through the political funhouse mirror during the health care reform debate into the fictitious concept of “death panels,” but that polarized discussion only obscured a legitimately important medical topic. Many of Sulmasy’s over 140 published journal articles deal with this very topic, some studying how well patients are informed of their options when their prognosis is poor and some considering the ethical boundaries for doctors between withdrawing care for a dying patient and assisting that patient in ending their life.
Wrestling with such a difficult topic requires an ethicist’s strong stomach for navigating the uncomfortable – best characterized by the title of a 1998 Sulmasy paper: “Killing and allowing to die: another look.” Discussing how doctors can best help their patients exert control over their own death requires blunt language; in a 2001 position paper for the American College of Physicians, Sulmasy (with co-author Lois Snyder) wrote that “Our societal emphasis on ‘cure’ and the medical emphasis on intervention have sometimes been a the expense of end-of-life care.” With studies showing that the vast majority of a person’s health care expenditures are made in the last year of their life, these are decisions that stretch beyond medicine into financial, ethical and spiritual zones.
The thread throughout Sulmasy’s work is giving the patient the information and authority they deserve to best navigate these difficult decisions. This isn’t always the case – a 2008 paper in The Journal of Medical Ethics found that patients with ALS were far more likely to have discussed end-of-life preferences with their doctors and families than patients with advanced cancer, despite equally low chances of survival.
Even when patients are informed of their medical options, Sulmasy found that a patient’s spiritual needs may not be fully addressed by his or her medical team. In a JAMA perspective published in 2006, Sulmasy recounted a case study of a 54-year-old man with terminal cancer who was routed to likely futile chemotherapy rather than palliative care because of his religious beliefs that a God-given miracle could cure his disease. In interviews, the patient’s doctor talked about her discomfort with talking about religion with her patient, a situation that Sulmasy argues led to him receiving less than ideal care and advice.
“Clearly, if physicians are committed to treating patients as whole persons in the 21st century, spirituality and religion cannot be ignored,” Sulmasy wrote. “The spiritual needs of patients are inextricably bound up with the ‘traditional’ duties of physicians.”
One of a physician’s duties may be, in some cases, to help a person die with dignity and free from pain, if those are their wishes. However, this obviously gets into touchy territory, where withdrawal of care and extreme doses of pain relievers are generally accepted by physicians while “physician-assisted suicide” is not. The line between those two acts is often fuzzy, and medical technology might blur it even further, as Sulmasy wrote in a 2007 paper for The Journal of General Internal Medicine. In it, he poses the question: when a dying patient is assisted by a device such as a pacemaker or an implantable defibrillator, is it ethical to disconnect that device if the patient wishes to die? Sulmasy concludes that turning off such a device does fit within the acceptable limits of “withdrawal of care,” but when technology produces viable artificial organs that actually replace their natural counterparts, disconnecting those devices would go too far. That’s just one way that the march of progress will produce ethical challenges in the future, and with his new appointment, Sulmasy will be on the front lines of that struggle.
“The rapid pace of technological progress assures us that these sorts of questions will continue to surface in clinical practice,” Sulmasy wrote. “Ethics, as the most practical branch of philosophy, must be prepared to keep pace with these challenges.”
Sulmasy, D. (2006). Spiritual Issues in the Care of Dying Patients: ” . . . It’s Okay Between Me and God” JAMA: The Journal of the American Medical Association, 296 (11), 1385-1392 DOI: 10.1001/jama.296.11.1385
Sulmasy, D. (2007). Within You / Without You: Biotechnology, Ontology, and Ethics Journal of General Internal Medicine, 23 (S1), 69-72 DOI: 10.1007/s11606-007-0326-x