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When my brother held the plug
Seeing your own family face the ultimate decision puts the Schiavo case in a new light
BY DAVID S. BERNSTEIN

THREE YEARS AGO, I watched my brother struggle with the gut-wrenching decision of whether to pull the plug and let his wife die — and then I watched as she miraculously recovered. And I can tell you, from up close on the horrible edge of life and death, that if Congress had butted in I would have punched Tom DeLay in the nose.

Jessica, wife of my brother Jon, suffered a terrible stroke; I boarded a plane to San Antonio thinking she would likely be dead on my arrival. Instead, she lay inert and intubated in an intensive-care bed.

The following days were hellish. I had the surreal task of distracting my two young nieces with morbidly fun-filled trips to the library and the children’s museum. My sister flew in from San Francisco to manage the money. Jessica’s mother and Jon were almost nonfunctional, beyond the immediate task of grasping the uncertain and sometimes contradictory information about Jessica’s condition and prognosis.

Her higher brain function, doctors said, had been irreparably damaged. She was probably paralyzed. If she had the misfortune ever to emerge from her coma, she would not be Jessica; she would be an unfortunate bearer of her physical semblance.

They were wrong. Before a final decision could be made, Jessica began to show initial signs of recovery. We waited. Small but critical surprises soon followed, allowing for a ray of optimism.

Amazingly, her brain and body returned. I last saw her in December, and aside from the need for a walking cane and a quickness to tire, she is healthy and happy. Having watched her at play with her daughters, I find it painfully difficult to return to those moments when my brother was seriously considering ending her life.

THIS IS the kind of story that prompts some to cheer for any intervention to keep Terri Schiavo alive. Medical science is, unfortunately, limited in both its ability to assess brain damage and its understanding of the brain’s recovery processes, and many physicians further lack the ability to convey what they know — and what they don’t know — to patients’ families. In Jessica’s case, for instance, doctors spoke of the small odds of recovery among all patients, but not of the more relevant chances for young, healthy patients like Jessica.

But we all make decisions, often very important ones, with imperfect information. If Jessica’s condition had persisted just another couple of days — when it would have come time to move her to a long-term unit — Jon would have had to decide. That burden is beyond my comprehension, but I know one thing for certain: Jessica wanted her husband of 14 years to make that decision. The two of them together had made every important decision of their adult lives, from where to live to how to raise their children. What Jon needed was input, information, guidance ... and then support. Had I disagreed with his decision, I never would have had the gall even to say so, let alone threaten to fight it in court. Nor would Jessica’s mother — who, like many parents, has disagreed with her daughter and son-in-law’s decisions on more than one occasion.

Terri Schiavo’s husband — who, according to the courts at the time, was fully capable of acting as her legal proxy — made the best decision he could with the information available to him. Fifteen years ago. I cannot fathom, thinking back, a worse torture for my brother than, after making his decision, having that decision challenged, second-guessed, and delayed. (Jon corrects me: testifying before Congress about that decision alongside his comatose wife, as Michael Schiavo has been subpoenaed to do, would be worse.) The decision is brutal; to actually remove the tube three times, and have it put back in, is sadistic.

It doesn’t matter what you or I think of Terri’s husband, or how we diagnose her condition or her chance of recovery. She didn’t trust us with her life. She didn’t trust her parents or the pope or Senator Bill Frist. She trusted her husband.

Jessica trusted her husband, my brother. If anyone had tried to stop him from doing what he thought was right for her, I promise you, they would have had to get through me first.

David S. Bernstein can be reached at dbernstein[a]phx.com


Issue Date: March 25 - 31, 2005
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