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End-of-Life Choices a Complicated Affair

Study shows family wishes, doctor preferences often enter into decisions

FRIDAY, Aug. 29, 2008 (HealthDay News) -- End-of-life and other critical medical decisions that arise when patients can't make their own choices are often complex affairs, new research shows.

They typically take into account family wishes and even physician preferences, knowledge and authority.

Dr. Alexia Torke, lead author of a study in the summer issue of The Journal of Clinical Ethics and an assistant professor of medicine at the University of Indiana School of Medicine in Indianapolis, found that standard approaches in the fields of medical ethics and laws often don't solve the problem of difficult decision-making.

"It's more complicated than you would think," she said.

Added Craig Borchardt, an assistant professor of humanities in medicine at Texas A&M Health Science Center College of Medicine, "Historically, patient autonomy was something we really needed to pay attention to over the last 20 to 30 years, this whole issue of medical technology and making sure patients have a say over their care. But what we're learning is that patients cannot make decisions in a vacuum, because they really experience a series of relationships that affect who they are as a person, and that's especially true when they have medical care. My perception of this article is that it validates reality."

From the landmark right-to-die case of Karen Ann Quinlan, in which the New Jersey Supreme Court ruled that patients should not lose the right to refuse medical therapy even though they may be unable to speak for themselves, to Terry Schiavo, the latest media-dominated example of the controversy, dealing with the issue has never been easy.

"It seems to be especially difficult to make life-and-death decisions for patients who can't speak for themselves," Torke said. "Physicians on the ground every day wrestle with this. . . . We wanted to find out more about what it is like for physicians on the ground."

Torke and her team interviewed 21 physicians at a Midwestern hospital, asking them to identify a time when they had to make a major surrogate decision.

The authors found that physicians do rely on standard legal and ethical guidelines but that their approaches were more complicated in two key ways.

"Physicians considered the wishes or needs of the surrogate or family in addition to those of the patient, and those aren't really accounted for in any of the ethical models. Nowhere does it say that it's OK to do something, because the parent's child tells you that's what they want, but, to some extent, that's what physicians do," Torke said.

In one case, a patient died in the hospital even after expressing a desire to die at home. The family, however, felt they couldn't cope with at-home care, and the physician, although uncomfortable with the decision, still realized that the wishes and needs of the family needed to be taken into account.

Secondly, physicians also felt they had authorities in making decisions, even though traditionally this is the role of family members. "They have the clinical expertise and a sense of duty to the patient," Torke said. "They have a stake in determining what's best for the patient. It's part of their obligation."

One physician described a decision to not pursue treatment for a patient based on the extremely poor prognosis. "Going further with treatment like, you know, trach and G-tube and these sorts of things, and likely ventilator dependence, was just futile . . . just inappropriate, just not right for the patient."

Torke said she could think of two possible responses to her findings. One would be to direct physicians back to the existing guidelines. The other would be to give more consideration to real-life issues when formulating guidelines.

"It's very reasonable for us to examine that family input is important and should be valued," she said. "Maybe ethical models are too narrow, and maybe they should consider other factors as well."

More information

The National Cancer Institute has more on end-of-life issues.

SOURCES: Alexia Torke, M.D., assistant professor, medicine, Indiana University School of Medicine, Indianapolis; Craig Borchardt, Ph.D., assistant professor, humanities in medicine, Texas A&M Health Science Center College of Medicine; Summer 2008, The Journal of Clinical Ethics
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