The Twilight Zone Of Consciousness

By Claudia Wallis

Hi, sweetheart. Hi, hi, it's mommy," says Mary Schindler to her daughter in a video available on the Internet. Terri Schiavo, 39, who hasn't been fully conscious for 13 years, gazes in her mother's direction from her hospital bed, and her expression blooms from slack-jawed passivity to beatific smile. She seems happy, comforted, aware--at least those are the interpretations the naive viewer would be inclined to apply. There are other brief videos on terrisfight.org In one, Schiavo seems to follow the movements of a balloon with her eyes; in another, she appears to comply with a doctor's request to open her eyes. "Good job, young lady," says the doctor.

On a patch of grass outside Hospice House Woodside in Pinellas Park, Fla., where Schiavo lies abed, about 30 people stood vigil last Thursday. They were protesting the removal of Schiavo's feeding tube the day before, an action sought by her husband Michael and approved by a Florida Circuit Court judge but bitterly opposed by Terri's parents Mary and Bob Schindler. Striding among them like a pep-rally leader was the nattily dressed Randall Terry, the prominent right-to-life advocate. "I'm here because the Schindlers asked me to be here," he declared. "This woman is being murdered."

Law, medicine and political grandstanding all come together in the tragic saga of Terri Schiavo, perhaps the most acrimonious end-of-life case to date. Decisions to remove feeding tubes or respirators from patients with no hope of recovery are daily events in hospitals. They are seen as a matter of established law, backed by such famous precedents as the 1976 Karen Ann Quinlan decision, in which parents were given permission to withdraw a respirator from their vegetative 21-year-old daughter, and the 1990 Nancy Cruzan case, in which the parents of an unconscious 33-year-old were allowed to remove her feeding tube.

End-of-life decisions are never treated lightly. Hospital ethics committees confer with family members to establish proof of a patient's wishes. "Overwhelmingly, these cases are decided by consensus," says Dr. Joseph J. Fins, chief of the division of medical ethics at New York Weill Cornell Medical Center. "What's so tragic here [in Schiavo's case] is that you have a family divided against itself."

As spouse, Michael Schiavo, who is a nurse, had decision-making power over his wife's treatment after he found her unconscious on the floor of their Florida home in February 1990. The 26-year-old had suffered cardiac arrest; her brain was severely damaged by lack of oxygen. Two years later, Michael won a malpractice suit against Terri's doctor. The jury awarded $700,000 for Terri's care and $300,000 to Michael for loss of companionship. In 1998 Michael sought permission to remove his wife's feeding tube, arguing that she had told him years earlier that she would not want to live in a severely compromised state. Terri did not leave a living will.

Schiavo's battle with his in-laws began shortly after the $1 million award; it has grown increasingly venomous. The Schindlers have accused Michael of abusing Terri and causing her death. They have charged him with wasting the money handed over for her care on legal fees and refusing to provide the right therapy. The relationship has not been helped by the fact that Michael has had a child with a girlfriend. The Schindlers have met with Jeb Bush, Florida's ardently right-to-life Governor, who has directed his legal staff to explore ways in which he might intervene. As recently as Oct. 10, the Schindlers unsuccessfully petitioned a federal court to step in to give them time to try therapy that might have helped Terri learn to eat by mouth before the feeding tube was removed. "Terri never said, 'If I become incapacitated, don't help me out,'" says their lawyer Patricia Anderson. "She never said, 'Don't give me a spoon.'"

Michael Schiavo refuses to speak to the press, but his lawyer George Felos dismisses the Schindlers' accusations: "Not only are they totally false, they are malicious." He rejects the notion that Terri could recover with therapy. The Florida court agreed with him last year after three of five doctors who examined Terri found her to be in a vegetative state. Only the two doctors chosen by the Schindlers disagreed. "She is in a classic permanent vegetative state," says neurologist Ronald Cranford, an expert on the condition at Hennepin County Medical Center in Minneapolis, Minn. Cranford examined Terri and was a witness for Michael's side of the case. "There is no chance for reversibility and no chance for treatment," he says.

Experts like Cranford decry the use of videotapes like those on terrisfight.org as misleading and gimmicky. Patients in a vegetative state do not lie motionless like the floating bodies in the classic 1978 sci-fi movie Coma. They are capable of smiling, crying and turning toward a voice. "There are many, many behaviors that look like conscious behavior that are reflexive or automatic," says Joseph Giacino, associate director of neuropsychology at the JFK Medical Center and the New Jersey Neuro-science Institute in Edison, N.J. After looking at the videos of Terri Schiavo for TIME, Giacino said, "This is not compelling evidence. It's interesting and suggestive. But most of these responses could occur in a vegetative state."

Giacino was the lead author of a landmark 2002 paper that defined a condition known as the "minimally conscious state." Minimally conscious patients are more responsive to the world than vegetative patients and, significantly, retain the potential to become fully conscious. The famous 1996 case of the "coma cop" involved a police officer who was almost certainly minimally conscious and briefly recovered consciousness after seven years. Schiavo's parents tried but failed to establish that this was their daughter's condition.

Without a feeding tube, Schiavo could live about 10 days. Death will come from dehydration, not starvation. While no one can say what she will feel, a recent survey of nurses caring for dying patients rated this a peaceful and good way to die. Her parents still hope for a miracle. Last Wednesday a priest touched Schiavo with a bit of cloth that had once touched Mother Teresa.

Doctors, lawyers and ethicists witnessing the malignity of the Schiavo case believe there is a lesson in it for everyone. "We all have an obligation to tell our loved ones what we would want done," says Fins. Schiavo was only 26 when disaster struck; Cruzan was a year younger. Quinlan was just 21. Says Fins: "You can be sure that one wish Terri Schiavo would have had is that her family wouldn't have fallen into this dispute at a time when she can't speak for herself."

--With reporting by Dee Gill/St. Petersburg and Sarah Sturmon Dale/Minneapolis

With reporting by Dee Gill/St. Petersburg and Sarah Sturmon Dale/Minneapolis