Friday, February 25, 2005

Life, death, and self

The long, bitter, emotionally painful and draining tale of Terri Schiavo may be - may be - approaching an end.

Fifteen years ago today, Terri Schiavo suffered severe brain damage when her heart stopped beating, believed to be as the result of a chemical imbalance arising out of her extreme attempts at keeping her weight down. She has never recovered. She breathes on her own, her heart beats on its own, but she is unable to eat or swallow and lives only by virtue of a feeding tube.

For seven long years, her husband Michael and her parents, Bob and Mary Schindler, have engaged in a running battle involving scores of rulings and tens of thousands of pages of documents over his attempts to have the feeding tube removed, which he insists would be in accordance with Terri's wishes. During the course of the case, her parents have accused him of mistreating her, abusing her, denying her treatment, of being interested only in collecting the $1 million won in a malpractice suit as the result of her brain injury, even of having caused that injury himself by assaulting her on the night she collapsed. None of the charges of neglect or abuse or assault have been substantiated, but still they, and the rumors they generate, persist.

On Tuesday, the Second District Court of Appeal in Florida cleared the way for the tube to be removed. But the same day, Pinellas Circuit Court Judge George Greer, who has been overseeing the case, issued an emergency stay. After a hearing on Friday, Greer extended the stay until March 18 - but in doing so, he
wrote that he was no longer comfortable granting delays in the family feud, which has been going on for nearly seven years and has been waged in every level of Florida's court system. He said the case must end.

"The court is no longer comfortable granting stays simply upon the filings of new motions," Greer wrote. "There will always be 'new' issues."
Even in the face of the years of accusations, the Appeals Court has previously upheld decisions finding that Terri expressed a belief that she did not want to be kept alive artificially. If the Court continues in that vein, and if Judge Greer means what he says about being unwilling to issue further stays, March 18 may mark the end of the legal battle.

Don't count on it, though: There are already reports that Jeb Bush, who in October of 2003 pushed through an emergency law preventing the removal of the feeding tube only to have it declared unconstitutional, is still looking for angles: Reportedly, the Department of Children and Families is going to seek a 60-day stay to "investigate" charges that Michael Schiavo has denied his wife medical care and rehabilitation.

But of course such charges could only be substantiated, could only even make sense just as charges, under the assumption that Terri Schiavo is what her parents claim her to be: someone who "laughed, cried, smiled and responded to their voices." Someone who only needs some therapy to be able to feed herself again. Someone who can come back to them. Someone who can be made whole.

But she can't be made whole. And she's not coming back.
Brain scans show that parts of Schiavo's brain have atrophied and been replaced by spinal fluid. With such severe damage, Schiavo can't show the recovery that Scantlin has, said Dr. Michael Pulley, assistant professor of neurology at the University of Florida College of Medicine in Jacksonville.

"Those types of changes don't reverse," Pulley said. "If you lose big pieces of brain, regardless of what it is - trauma, stroke, surgery - it doesn't come back."
The contrary claims made by her parents - or, more particularly, by their lawyer - don't stand up to scrutiny. For one thing, the tapes supposedly showing her responding to her parents, shown widely on TV, are carefully chosen moments and there is in fact no evidence the "responses" are anything other than random motions and sounds or at most just reflexes. Unbiased evidence of "consciousness" simply does not exist and the doctors brought in by the courts, who had no personal stake in the outcome, declared she is in a persistent vegetative state with no hope for recovery.

The hard truth, the painful truth, the distressing truth, a truth that only our advances in medicine and our increasing knowledge of the brain have forced us to confront, is that there is a difference between survival of the body and survival of what for lack of a better term might be called the self. Whatever that is, whatever it is that makes us who we are as individuals, that makes us us as opposed to someone else, ended for Terri Schiavo 15 years ago. It is only the body, the shell, that remains. Terri Schiavo as a person, as Terri Schiavo, is dead and has been for well over a decade.

The emotional tragedy driving the legal tragedy is the inability of Terri's parents to accept her death, their refusal to mourn her loss, their persistence in a fantasy of her return. Such a reaction is not unnatural, but it is mistaken and ultimately will cause the family more pain even if they were to win their case. Pain not only emotional but financial as a host of "therapists" hawking their wares and their cures will circle like vultures over a family already threadbare with grief.

Some earlier cases, like the fairly well-known one of Karen Ann Quinlan were often easier because the brain damage, while not necessarily more extensive than that suffered by Terri Schiavo, was undeniable and no one could even pretend she was responsive to stimuli. But one thing, one central thing, remains the same: Karen Ann Quinlan, just like Terri Schiavo, died long before her body did.

I recall the last days of my mother's life. Long sick with diabetes and end-stage renal disease (i.e., kidney failure), in and out of the hospital I don't remember how many times, she was lying in a hospital bed, reduced by a string of transient ischemic attacks (TIAs) to a twitching, comatose, body with an EEG all but flatlined. Two days earlier, unable to speak because of a trach tube, unable to write because her hands could not clearly receive the messages her brain was screaming at them, she mouthed to me what I think - but I don't know - were the words "pull the plug." I shook my head no. Eyes wide with distress, she clearly mouthed "why?" I said "I can't." Not with the doctor, a nurse, and my father in the room with me. And not without being sure of what she said. She turned away in frustration.

I intended to find her alone later, to ask her if she had in fact asked me to pull the plug on her. If she said yes, if she had nodded, I would have done it. The chance never arose: She lapsed into a coma that night. It is one of the great regrets of my life that I may have failed to comply with a wish that she knew that I, alone of all the people in her life, would be willing to fulfill.

But the point of this story comes the next day. There was my father, sitting at the bedside, holding my mother's hand, insisting from time to time that she was giving his hand a squeeze "to let me know she knows I'm here." But she didn't know. She was no longer there. It was only a question of how long it would be before her heart realized it and stopped beating. But he refused to believe it, refused to accept it, until another day later when her heart finally did gave out.

The brain damage suffered by Terri Schiavo did not reach those parts of the brain that control base-level autonomous functions like breathing. But while Terri Schiavo's body survives by use of a feeding tube, Terri Schiavo herself died years ago.

Her parents should let what remains go as well so they can begin mourning and - eventually - recovering and rebuilding.

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