By Andis Robeznieks, AMNews staff. Dec. 1, 2003.
The Newspaper for American Physicians
Although most disputes rarely reach the tumultuousness of the Schiavo case, physicians are often called upon to mediate disagreements over an incapacitated family member's medical care. When this happens, some experts agree that convening an ethics committee offers the best hope for consensus building.
"Until you really have a patient or a case that needs the service of an ethics committee, you don't recognize the value they bring," said Thomas A. Kintanar, MD, a Fort Wayne, Ind., family physician and hospice director.
"An ethics committee can help ensure that the decisions made are the best that can be made medically and that can bring the family peace," he said.
A member of the American Academy of Family Physicians Board of Directors, Dr. Kintanar said he was once in a situation similar to the Schiavo case after the decision was made to withdraw the feeding tube of a 23-year-old developmentally disabled woman with microcephaly as a condition of placing her in hospice care. It was a decision that ignited the community and divided the family.
"There was a lynch mob out to get me," Dr. Kintanar said. "She was a beautiful individual, but she was nonresponsive and declining."
He said an ethics committee was convened consisting of family members, doctors, nurses, clergy, a volunteer community representative and an expert in philosophy and ethics.
"Everyone was invited to state their opinions," Dr. Kintanar said. "It was discussed, debated and dissected. Everyone who had any relationship with the patient would have a part in the final decision."
The last people to speak were the patient's parents, who had power of attorney and were leaning against further use of the feeding tube, Dr. Kintanar recalled.
They said the patient's brother had gone through the same situation, and they didn't see much benefit in repeating the experience.
"There wasn't a dry eye in that room when they shared their story," he said. "The experience itself was extremely gratifying because we had a community coalesce to find common ground. It's a beautiful story compared to what transpired in Florida."
Dr. Kintanar said physicians on ethics committees should be realistic when addressing a patient's medical condition, but they should never take away a family's hope. They should help guide decisions but not make them. His analogy is that he is the navigator, but the family captains the ship.
An ethics committee also can take away some of the burden from individuals who otherwise would be left to make these decisions on their own, which often leads to second-guessing and guilt that can last long after a decision is made.
The more the choices are made as group decisions, the less likely it is for individuals to develop that sense of guilt, said Michael Goldrich, MD, chair of the AMA's Council on Ethical and Judicial Affairs and a Highland Park, N.J.-based otolaryngologist.
A variation on this sense of guilt was expressed by Florida Senate President James King, who remarked after the state Legislature passed a bill giving Gov. Jeb Bush the power to reconnect Terri Schiavo's feeding tube: "I keep thinking, 'What if Terri didn't want this done at all?' "
Sen. King sponsored Florida's 1988 Death With Dignity living-will law that allows terminally ill patients to refuse artificial life support or feeding tubes, but that law does not apply to Schiavo because she does not have a living will. Even if she did, questions could remain, because she is not, by definition, terminally ill.
Her case has drawn the nation's attention to the question of who should make decisions in these cases, because her husband and her parents cannot agree on whether to withdraw her feeding tube.
The courts agreed with the husband and called for feeding to be stopped, but then the Legislature and Gov. Bush sided with the parents and ordered feeding to be reinstated.
"It's almost become a Greek tragedy with deus ex machina and Jeb Bush coming down from the ceiling," said Myles Sheehan, MD, associate professor of medicine and geriatrics at Loyola University Chicago's Stritch School of Medicine.
Dr. Sheehan, a Jesuit priest, said it is important to keep in mind the specifics of each case, not comparing it to any others. He is frequently involved in feeding-tube decisions but, unlike Terri Schiavo, his patients are mostly older people in the end stage of terminal illness.
"There is a presumption in favor of feeding and hydration, but there are situations where it's a really bad idea," Dr. Sheehan said, adding that comparing someone who is terminally ill to someone like Terri Schiavo may not be the right thing to do.
"Although they both involve feeding-tube decisions, linking acute tragedies to chronic illness can lead to making mistakes in medical decisions," he said.
They're still perpetuating the lies, I see.