THURSDAY, March 24, 2005 (HealthDay News) -- The tragic plight of Terri Schiavo is focusing unprecedented public attention on the most private of matters -- an individual's right to die.
News reports have drawn parallels to cases like Karen Quinlan of New Jersey in the 1970s and Nancy Cruzan of Missouri in the early 1990s. But in those instances, family members were in agreement that the young women should be disconnected from the technologies that kept them alive.
Schiavo's case is far more troubled, with family members locked in bitter disagreement as to what the word "alive" might mean to Terri Schiavo herself.
According to experts, her condition has always fallen into a kind of gray zone between brain death and physical life.
Doctors say the 41-year-old Florida woman has been in a "permanent vegetative state" for 15 years, ever since her heart temporarily stopped beating due to a chemical imbalance, thought to have been caused by an eating disorder.
Snippets of video aired on the media appear to show her smiling and blinking up at others, suggesting real inner life.
Unfortunately, "that's the nature of a vegetative state, and that's what's so unnerving to family and staff taking care of her," said Dr. Timothy Quill, a professor of medicine, psychiatry and medical humanities at the University of Rochester Medical Center, in Rochester, N.Y.
"The base of her brain is intact, and it's the base of the brain that controls basic bodily functions," said Quill, the author of a commentary on the Schiavo case published in the April 21 issue of the New England Journal of Medicine but released early this week.
However, early brain scans showed that Schiavo's cerebral cortex -- the part of her brain housing higher cognition -- probably ceased to function since soon after she suffered the cardiac arrest that brought her to hospital in 1990. Experts also agree that at this point, Schiavo has no hope of recovery.
According to Quill and other specialists, the cerebral cortex is home to all of those things that give us our essential humanity -- our personality, ability to interact and communicate, our awareness, memories. In that sense, he said, Terri Schiavo has been "gone" since 1990, even though her body, face and eyes continue to move.
"The question for any neurologist coming to see her is, 'Do these movements connect to anything around her?'" Quill said. "And the consensus is, from many of the neurologists who have seen her, is that it does not connect -- even though family may disagree with that."
Gregory Pence teaches philosophy and medical ethics at the University of Alabama at Birmingham and has followed the Schiavo case for years. He agreed with Quill that Schiavo has probably lost all semblance of human consciousness. And he said that, even if a remnant of functioning cortex survives, the question still comes down to 'What would Terri want?'
"Let's suppose that some nub of consciousness is there, trying to make sense of this scrambled world. It can't do it; there's no sense of agency," Pence said. "It would be like being at the bottom of a swimming pool, trying to see the light."
"What would she want, then?" he said. "What would any reasonable person want?"
Quill stressed that, despite a lack of evidence of any electrical activity in her cerebral cortex, Schiavo is not technically brain-dead.
"In brain death the cortex is not functioning -- as in Terri Schiavo's case -- but also the base of the brain isn't functioning," he explained. Neurologists agree that shutdown of both the cortex and the base of the brain constitutes "a medical reason to stop treatment," he said.
However, the base of the Schiavo's brain still functions, and although "there's still a lot of discussion, there's no consensus at all [among experts] that this constitutes death," Quill said.
This means patients like Schiavo hover in an ideological and medical limbo, somewhere between life and death.
"I'd stress though, that this does not mean she is no longer a 'person' -- she still has dignity and should be respected," Quill said. "She's still a person in some sense, but not in any of the ways that we usually think of -- the things that give life meaning, such as the ability to interact, to feel emotion, and to have awareness of people around her. She does not have those functions."
Quill, who is also director of the Palliative Care Program at the University of Rochester Medical Center, stressed that the family acrimony evidenced in the Schiavo case is rare, and most families who face these terrible crises come to some kind of informed agreement.
"Usually we sit down with the family, trying to get clear about what the situation is, figuring out with them what the patient would want under those circumstances," he said. "We solve the vast majority of these cases, even when there is some initial conflict, just by meeting with people over time."
In the Schiavo case, her husband, Michael, has argued for years that his wife's unwritten wish was to not be kept alive by artificial means. Her parents, Bob and Mary Schindler, insist that Terri may one day get better.
The existence of a Living Will helps inform right-to-die decisions. And, Quill said, "if there's one small silver lining in all of this, it's that it [the Schiavo case] has really increased the discussion -- people are saying 'My gosh, look what can happen if I don't do this.' Not only can the courts get involved, but even the Congress and legislature. And that's people's worst nightmare -- having these groups involved in what's a personal, medical decision."
But Pence stressed that, while Living Wills can be extremely helpful, they may not fully protect incapacitated individuals from the kind of struggle being waged over Terri Schiavo.
"No matter what advance directive you have, and no matter what the rest of the family agrees on, if one relative comes in and feels that, for personal reasons, they have to do a full-court press, there's nothing anyone can do," he said. "Nothing is going to be ironclad against a family member coming in and saying, 'This is not what she wanted.'"
That's why appointing what's legally called a "health care proxy," as well as close personal discussions with all close family members, may be key to ensuring that one's wishes are met should the worst occur, Quill said.
"It's not enough to just fill out these documents," he said. "It's really talking to your family about what is important to you. Because they are going to have to have that as a basis for making these decisions later."
For more on death and dying, visit the National Library of Medicine.