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My Time by Abigail Trafford

Terri Schiavo and the Reality Gap

By Abigail Trafford
Tuesday, March 29, 2005; Page HE06

The memory of my father's flickering eye makes me gasp.

He was laid out in the intensive care unit -- former football player, lawyer, music composer -- the victim of a sudden massive heart attack. When his heart had stopped beating, his oxygen-starved brain was quietly destroyed. Rushed to the hospital, he was "revived" and even put on an experimental heart pump. So there he lay, alive but not living.

One by one, we gathered around the bed. Suddenly I thought his eye moved, a flicker. I gasped. Could he hear us? Was this all a mistake -- would he come out of it?

As the days wore on, we understood that any twitching was involuntary. We'd stroke his arm and weep. And watch the lifeless body deteriorate, the skin becoming as fragile as parchment.

Finally, the machines were turned off and the tubes withdrawn; my father was declared dead. Finally, he could rest in peace.

It is through the lens of my father's death that I have watched the Terri Schiavo case in horror.

First is the Reality Gap. Medical marvels that can save lives have also blurred the line between life and death. But since my father died 23 years ago, much progress has been made in medicine and the law to determine brain death and persistent vegetative state and to identify the circumstances in which patients or their families can refuse or withdraw treatment. There doesn't seem to be much doubt about Terri Schiavo's condition. The overwhelming medical evidence over the past 15 years indicates that she is in a persistent vegetative state and could never regain consciousness.

Yet many -- from those who hover outside the hospice in Florida all the way up to members of Congress -- have disassociated themselves from this reality. They talk about her as though she were a conscious human being, capable of feeling hungry, for example. She's not. When the president keeps saying he wants "err on the side of life," he's got it backward. In escalating this case into a national political circus, he has erred not on the side of life, but on the side of illusion.

Second is the Privacy Gap. All families are dysfunctional in unique ways. I remember those long hours at the hospital, sorting through the emotions of grief and anger. My father had no living will. As a family, we had to make choices for a loved one who could not speak. Technically, my father was on the edge of brain death. Doctors disagreed on how to proceed. We stumbled through our shock to comprehend his fate.

Within a few days, his situation became clearer. Fortunately, we were able to build a consensus around the reality of his dying and let my father go. Continuing with treatment would be mutilating the body. Our ordeal lasted less than two weeks. It was an intensely private family affair, in concert with the hospital staff.

It's sad enough that a family's pain has been exploited on prime-time news. But it's shocking that Congress and the president would suddenly barge in to have the last word on this kind of case. In ICUs across the country, families are struggling with the modern medical dilemma in which technical capacity to prolong life outstrips a person's capacity to live. These cases are complex and usually involve older patients, though this kind of catastrophe can occur at any age. There are safeguards in place to protect the vulnerable. But in this most personal and intimate space where life meets death, there should be a sign on the door: Congress Keep Out.

Third is the Language Gap. Partisans for reinserting a feeding tube into Terri Schiavo tape their mouths shut with the letters L-I-F-E. But the word -- life -- has been hijacked to promote an ideology. Being pro-life no longer embraces the fullness of human existence. Of course, people are in favor of life. But that doesn't eliminate death. Or the gray zone of reality where most of us grapple with uncertainty and ambivalence to find our moral compass and make difficult decisions about the ones we love.

After my father's death, all of us in the family went out and got living wills and health proxies so that our wishes would be known in case we were not able to speak for ourselves. A similar response has occurred on a larger scale in the wake of the Terri Schiavo saga, according to news reports. That's a hopeful sign. Otherwise, the "absolute tragedy that has befallen Mrs. Schiavo," as the judges for the U.S. Court of Appeals for the 11th Circuit put it, would go down in medical history as an absolute tragedy for the country. •

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