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Spelling it out

Medicine | Schiavo case shows the need for very specific advance directives

Issue: "Terri Schiavo: In memoriam," April 9, 2005

As Terri Schiavo's tongue bled and her eyes sank from the effects of dehydration, her husband's attorney, George Felos, announced what may be the first autopsy ever scheduled for public-relations purposes in advance of a person's death. Michael Schiavo, his lawyer said last week, hoped the results would show "the full and massive extent of the damage to Mrs. Schiavo's brain," and prove to the public that she wasn't cognitive, responsive, or cruelly starved to death.

But interpreting brain autopsy results can be a fairly subjective medical discipline, notes Eileen Bigio, director of neuropathology at Northwestern University's Feinberg School of Medicine-and besides that, she said, the Schiavo case isn't just about medicine.

"Having an autopsy prove that Mrs. Schiavo was neurologically devastated doesn't prove anything about whether she should have been allowed to survive," said Dr. Bigio. "This isn't purely a medical issue. It's all wrapped up with ethical questions. Mr. Schiavo is trying to prove something that can't be proven."

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What the Schiavo case has proven, however, is that in America, the mentally disabled can no longer be certain of compassionate treatment. Though a court found that Mrs. Schiavo would not have wanted to be fed through a tube-and by extension, that a starvation death was a compassionate act-documentary evidence of treachery, neglect, and conflicting interests casts considerable doubt on that verdict.

The messy and very public case has underscored the need for a new kind of advance medical directive: one that specifies in writing not only what patients don't want, but also what they do want.

While Judge George Greer agreed with Mr. Schiavo that his wife didn't want a feeding tube, "if we had had clear and compelling evidence of what Terri did want, we could have avoided this whole thing," said David Stevens, executive director of the Christian Medical Association (CMA).

To that end, CMA, a consortium of 17,000 Christian doctors, spent six months hammering out an "advance directive kit" anchored in a biblical view of the value of life: "I believe that life is very precious, a gift from God," the directive begins. "I deserve to be treated with dignity and respect."

The directive (at cmdahome.org) allows signers to indicate basic care they'd like to receive, such as being kept warm and clean, and being fed and hydrated by mouth if possible. The document also allows patients to expressly forbid any form of euthanasia.

"In our present medical atmosphere, we feel this is very important," Dr. Stevens said, noting that CMA is tracking "more and more cases that can only be classified as passive euthanasia."

In addition, an increasing number of medical institutions are embracing "futile care" policies that enable physicians to deny or withhold treatment over a family's objections. Add to that the rise of "personhood theory," under which many medical ethicists now deem "awareness" a prerequisite for "personhood," and "personhood" a prerequisite for being allowed to live.

During a March 24 debate on Court TV, Discovery Institute fellow Wesley J. Smith asked Florida bioethicist Bill Allen whether he thought Terri Schiavo was a "person."

"No I do not . . . ," Mr. Allen replied. "What is a person without awareness?" Mr. Smith said he felt being a human means being a person, in and of itself. Dr. Allen said someone ought to get consent to harvest Mrs. Schiavo's organs.

Such worldview clashes are increasing in medicine, said Dr. Stevens, making it critical that Christians not only prepare written directives but also appoint like-minded medical proxies. "A living will alone is not the way to go because you can't think of every consideration," he said. "Appoint a person with power-of-attorney for health-care decisions and make sure they share your Christian belief system. The time to discuss your desires is when there is a free flow of information going in both directions."

Such a discussion might have changed Terri Schiavo's life. She may indeed have told her husband she didn't want to be fed through a tube. But would she also have told him to forbid her parents to bring her a cup of cold water?

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