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Schiavo could teach us something

 (The Spokesman-Review)
(The Spokesman-Review)
Ellen Goodman Boston Globe

BOSTON – What now will be the legacy of Terri Schiavo?

A country as polarized as her husband and parents, who cannot even agree on the interment of her body? A Congress so craven that it passes a law turning every such case into every such circus? An issue so politicized that a list of the parents’ financial supporters is being marketed to every conservative fund-raiser?

Or is it possible that people on either side of this case will arrive at the same moral place? Will they sit down at the dinner table with their families and their living wills? Will they, at last, have a long, hard discussion about “what I would want” and “who will make those decisions for me”?

In the final round of an endless series of ironies, Rep. Tom DeLay sermonized, “it’s not for any one of us to decide what her quality of life should be. It’s not for any one of us to decide whether she should live or die.” Now we know that DeLay himself had to answer those questions when his own father was severely brain-damaged. His family, too, had to decide what the quality of life should be, whether the father should live or die.

Over the past weeks, we have heard members of Congress tell family stories on C-SPAN. We have turned to each other at work and at the supermarket sharing painful memories laced with words like “my mother,” and “my father.”

Terri’s case, believe it or not, was a relatively easy one. To describe Terri Schiavo as handicapped degrades the very term. The cortex, the part of the brain that made her “Terri,” was destroyed 15 years ago. Despite the belief of her tortured parents and a discredited neurologist, all that remained were the reflexes caught on a videotape.

What brought this story to court wasn’t medical disagreement but family conflict. What made it different from Tom DeLay’s family crisis – or yours or mine – was angry dissension over what Terri would want. She left no written directive.

Ronald Cranford, a neurologist and bioethicist who examined Terri, figures that “of the 6,000 people who die every day, two-thirds will involve some element of a decision the family has to make.” Most of the end-of-life decisions are not about the young, but the old. If there are 15,000 Americans in a persistent vegetative state, Cranford counts more than 100,000 in the late stages of Alzheimer’s disease.

These decisions are not just about respirators turned on and off, feeding tubes inserted and removed. In real life, medicine often involves a number of cascading decisions in the face of unknown outcomes.

Nearly 80 percent of Americans have said of Schiavo, “I don’t want to live like that.” Yet less than 30 percent have signed living wills to tell their doctors and families what they have told pollsters.

It took Michael Schiavo, the demonized husband, four years to give up hope. In far less certain cases, the initial desire to “do everything” to save someone we love often evolves into uncertainty about what we should do for how much hope of what kind of recovery.

It’s why we need a health care proxy as well as a living will. We need someone we can trust and burden with the authority to make decisions for us when we are unable.

But this too will require some deeper, bolder, tough talk: If we don’t want to live “like that,” how do we want to live? Like what?

Wellesley College bioethicist Adrienne Asch says, “The typical advance directive or living will does not ask the right questions. It asks what sort of medical intervention we want or don’t want. The question that we ought to be asked is what am I experiencing? What will make me feel that I have something to live for? What is enough?”

Asch, who is blind and very conscious of societal attitudes toward disabilities, says that if she wrote the living will form, it would ask people to imagine themselves in a range of scenarios. When would we want our lives prolonged by medicine? In her own advance directive she has written that “as long as the people who know me believe that I recognize them and can differentiate them from strangers, I want to be alive.” After that, enough.

People on all sides share a moral obligation. We need to let the people we leave behind mourn with the clear conscience that, as much as possible, they did what we wanted.

Terri Schiavo was only 26 when this tragedy began. Her family has been, simply, devastated. We owe our own families much, much more than that.

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