In Feeding-Tube Case, Many Neurologists Back Courts

New York Times
By DONALD G. McNEIL Jr.

Published: October 26, 2003

At the center of the court battle over the immobile body of Terri Schiavo, the 39-year-old Florida woman kept alive by a feeding tube, is a videotape made by her parents. It lasts only minutes but has been played so many times on television and the Internet that it all but defines her.

On the tape, Mrs. Schiavo, propped up in bed, is greeted and kissed by her mother. She is not in the deep, unresponsive sleep of a coma. Her eyes are open, and she blinks rapidly but fairly normally. She seems to follow her mother's movements, but her mother's face is too close for that to be clear. Her jaw is slack and her mouth hangs open, but at moments its corners appear to turn up in a faint smile.

To many supporters of Mrs. Schiavo's parents, who say she should be kept alive on a feeding tube, the tape demonstrates that she can still think and react. But many leading neurologists say that it means no such thing, that the appearances of brain-damaged patients can be very misleading.

Florida courts have ruled, after hearing from several experts who examined her, that Mrs. Schiavo has been in a "persistent vegetative state" — an official diagnosis of the American Academy of Neurology — since her brain was deprived of oxygen when she suffered a heart attack 13 years ago. Her feeding tube was removed on Oct. 15, but it was reinserted six days later after the Florida Legislature gave Gov. Jeb Bush the authority to override the courts.

Patients in vegetative states may have open eyes, periods of waking and sleeping and some reflexes, like gagging, jerking a limb away from pain or reacting to light or noise. They may make noises or faces and even say words.

But they do not, according to academy criteria, show self-awareness, comprehend language or expressions, or interact with others.

A vegetative state "is the ironic combination of wakefulness without awareness," said Dr. James L. Bernat, a Dartmouth Medical School neurologist and past chairman of the academy's ethics committee.

Mrs. Schiavo's parents and the conservative Christian groups working to keep her on the feeding tube insist that she is in a "minimally conscious state" — another official diagnosis. They note that on the videotape, her eyes appear to follow a silver balloon waved before them.

Her father, Bob Schindler, visited her on Thursday night and said later that she had made the sound "unh-unh," as if to say no, when he kissed her, and "unh-unh" again when he asked her if she wanted him to kiss her. He described that as a sign that she could hear and answer questions.

In 2001, Dr. Richard Neubauer, director of the Ocean Hyperbaric Neurologic Center in Florida, said in an affidavit that said he found Mrs. Schiavo "not in a vegetative state" and "at least semi-responsive to her environment." He was seeking to treat her by putting her in an oxygen-rich pressure chamber.

A famous case of "minimally conscious," said Dr. Michael P. McQuillen, a professor of neurology at the University of Rochester, was that of a woman who appeared vegetative but, on overhearing her sister on the phone making funeral arrangements for a favorite uncle, began to cry.

Mrs. Schiavo is fed by tube and incapable of making decisions for herself. She cannot swallow, though her parents argue that with help she might be able to relearn swallowing so she could be spoon-fed.

Early in Mrs. Schiavo's illness, her husband, Michael, sent her to California to have a nerve stimulator implanted, one neurologist said, but he later came to believe she would never recover.

Vegetative states become persistent, according to the neurology academy's criteria, after about three months, after which it is highly unlikely that they will end. Patients like Mrs. Schiavo whose brains have been starved of oxygen do worse than patients who suffer head trauma, neurologists say.

"Thirteen years is plenty long enough to tell," said Dr. Bernat, who said he had not examined Mrs. Schiavo or seen any videotapes. "Assuming she is in a vegetative state, I can say with medical certainty that there is no realistic hope that she'll recover."

Dr. Bernat was part of a large medical panel that in 1994 assessed thousands of patients' records and found that up to 35,000 Americans were in persistent vegetative states.

Mrs. Schiavo's parents and a Web site, terrisfight.org, have cited "miracle recoveries" by people who supposedly woke up, speaking and moving, after years in comas.

Dr. Bernat said his 1994 panel looked into more than 70 "alleged late recoverers" and found that "there wasn't a single one that was verified, so I'm very skeptical."

Dr. Ron Cranford, a Minneapolis neurologist who was Dr. Bernat's predecessor on the academy ethics committee, examined Mrs. Schiavo as part of the original trial and testified in favor of her husband's request to discontinue feeding.

He was adamant that she would never get better, and he says he is furious about the popular videotape.

"She's vegetative, she's flat-out vegetative, there's never been a shred of doubt that she's vegetative, and nothing's going to change that," Dr. Cranford said in a telephone interview. "This has been a massive propaganda campaign, which has been very successful because it deludes the public into thinking she's really there."

Her eyes do not steadily track objects, he said, and when she appears to look at her mother or a camera for a moment, it is merely rapid eye movement.

More important, he said, "the CAT scans indicate a massive shrinkage of her brain, with its higher centers completely destroyed, which indicates irreversibility."

The Schiavo case is the kind of family fight that doctors treating brain-damaged patients say they dread. "In a case like this, you're between a rock and a hard place," said Dr. McQuillen of the University of Rochester.

He added that keeping Mrs. Schiavo alive artificially could be a burden on her.

For many terminally ill patients, he pointed out, "food is an absolute burden — it increases secretions and makes them uncomfortable."

http://www.nytimes.com/2003/10/26/national/26BRAI.html?ex=1067745600&en=c15302269531e513&ei=5062&partner=GOOGLE