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Politics : Politics for Pros- moderated -- Ignore unavailable to you. Want to Upgrade?

To: Lane3 who wrote (15513)	11/7/2003 10:22:28 AM
From: Lane3	Read Replies (1) \| Respond to of 793640

There's a tidbit I hadn't seen before in this column on the Terri Schiavo case. By Ellen Goodman Don't leave life, death up to a stranger It wasn't the volume of mail that surprised me when I protested "Terri's Law." After all, the case of Terri Schiavo, a Florida woman back on a feeding tube, had been put before a national jury. The vast majority of my e-mailers seemed to believe that the few minutes of edited video represented the 24/7 reality of her last 13 years. Nor was it the villain that surprised me. What prompted most writers to put fingers to keyboard, add vitriol and send was the certainty that her husband, Michael, was an untrustworthy, unfaithful, would-be killer. As a Hotmail correspondent said, "Do you think that fathering a second child with a woman other than his wife has anything to do with his actions? Duh." What surprised me, rather, were the people who simply sided with parents over spouses. "Spouses often go on with their lives; parents cannot 'replace' the kids," wrote one. Another said, "As a parent I cannot imagine not having a say in the care of my children." Of course, much of the sentiment was loaded by lopsided coverage. Terri's parents and an entire industry of supporters have told and sold their side. Michael, to his credit and debit, has made only one national appearance before a woefully unprepared Larry King. Unlike most of my correspondents, I don't pretend to know the real family story except for the enmity between husband and parents. The much-demonized Michael was tenacious in her care and, for many years, in the search for a cure. His refusal to divorce her and give up guardianship, as more than one reader suggested, doesn't make him less loyal in my view. As for his portion of any leftover malpractice money, it is nearly all gone to lawyers. But the story was cast as a set of opponents: parents desperate to save their child versus a husband eager for her to die. It was not cast as a set of questions: Would Terri want to live this way, and who gets to speak for her? Nevertheless, what intrigues me most is the debate prompted by the Schiavo case: Which family should hold sway over our life and death - the one we were born into or the one we chose? Each of us can cite someone who married away - escaped the family that never shared his or her point of view. Each of us has a friend whose husband or wife never understands her or him. There is no one-size-fits-all- families answer. The law around this issue grew out of the tragic fate of two other young women, Karen Ann Quinlan and then Nancy Cruzan, whose case went before the Supreme Court the very year that Terri Schiavo began her long ordeal. In 1990, Nancy's parents fought the state of Missouri to remove a feeding tube from their daughter. The justices ruled that a person has the right to refuse therapy. Then they went further. Realizing how few young people think about these matters, they ruled that if someone is incompetent, the right to refuse treatment goes to a legally authorized surrogate. Since then, every state has a passed a law saying in general that the decision-making passes first to a spouse, then to an adult child, then to the parents. This is the ruling the Florida Legislature overturned so casually when it made Jeb Bush her judge, doctor and guardian. It's said the Schiavo story is the perfect lesson for a living will. If Terri had written down what she wanted, we wouldn't have families squabbling over her fate. But it's not that simple. Medicine these days, as ethicist George Annas says, "is getting better at resuscitating and bringing people part-way back. It's better at starting than stopping." No one can craft a personal statement to cover every possibility. So in tune with a living will, we need a health-care proxy to pick the person we trust to make the decisions we would make. And we have to talk about it. Terri's story pricks our end-of-life anxieties. For me, the terror of years in a state of "wakefulness without awareness" surpasses the fear of death. And while, as a mother, I understand the desire to decide a daughter's fate, as a wife, I chose my husband as my proxy. It may be different for others. But the irony of the Florida debacle is that a dispute over which family member decides - husband or parents - has ended up with a governor deciding. A governor who never even met her. Let everyone who has e-mailed or just wondered about biology or matrimony take a health-care proxy and pick your own decision-maker. Otherwise it could be a stranger named Jeb. * Ellen Goodman is a columnist for The Boston Globe, P.O. Box 2378, Dorchester, MA 02107-2378; e-mail: ellengoodman@globe.com.