Schiavo case underscores importance of living wills

Greg Bean

Coda

It’s now just over 20 years since my father lost his battle with cancer. He died on Father’s Day 1984. His illness was the only demon he ever faced that he could not conquer by sheer force of will, but he did not accept that going in.

Days after he was diagnosed, he called a family meeting and let us all know in no uncertain terms that he intended to fight this thing to the bitter end, and he intended to win.

It was an intensely personal decision that he’d made, and he wanted our support. Because it was his choice, we agreed, made personal vows to help fulfill his wishes, even if he could no longer fulfill them himself.

I was a much younger man then, and I had no idea how brutal that fight would become and how hard it can be to die. And I had no idea how difficult it would be for his family to make the choices that would prolong life at his moments of most extreme suffering, even if those measures would only prolong life for hours, or even minutes.

It was that experience that led me, after discussion with my wife, to sign a living will.

Perhaps I’m not as strong as my father, but when I die I want it to be more peaceful, less painful. I want to have a measure of control over my passing. I have tried to lead a dignified life and I want to retain as much of that dignity as possible when I leave it.

Normally, I’d hesitate to discuss such private matters in a public forum, but like most Americans, I’ve been thinking a lot about this issue as a result of the Terri Schiavo case in Florida.

And like three out of four Americans polled in the week before her death, I have been appalled at national politicians — Florida Gov. Jeb Bush, President George W. Bush, House Speaker Tom Delay, to name a few — who saw in this wrenching family struggle a callous opportunity to advance their own political agendas.

Carl Hiaasen, a columnist for the Miami Herald, spoke what was in my heart when he wrote March 27 that this poor woman’s case had become “one of the most cynical charades in memory.”

“From the Congress to the White House to the statehouse, they all got their piece of Terri Schiavo,” Hiaasen wrote, noting that the same politicians who exploited her in life would certainly exploit her in death as well.

Already, that exploitation is taking place as bills are introduced in various state legislatures to regulate this most personal of matters. In Alabama, for instance, The New York Times reports that politicians introduced the Alabama Starvation and Dehydration Prevention Act, which would ban the withdrawal of a feeding tube without explicit written instructions from the patient. In Michigan, lawmakers proposed a measure that would bar an adulterer from making medical decisions for an incapacitated spouse.

Unlike those who see an ultimately negative outcome from this posturing, however, I think our national soul-searching on this issue can have very positive results.

While Terri Schiavo was only one of the thousands of Americans in long-term hospice care, and her family one of thousands making difficult personal decisions, her case has forced our society to seriously confront, and talk about, the inevitability of life’s end.

Perhaps because her case was so difficult, the family sides so clearly drawn, it is her case that provoked intense national and even international debate on the rights of persons, families and governments when it comes to terminal illness, or life that cannot be supported absent long-term artificial means.

Laurie Zoloth, a professor of medical ethics at Northwestern University, said last week that the Schiavo case “has made every American family confront with seriousness of purpose, with passion and with love what the limits of medicine are, and what the ends of human life ought to be.”

In an Associated Press story, the Rev. George Dean Carter, a Baptist minister and chaplain at a hospice in Lumberton, N.C., agreed. At one local eatery, he said, “You could hear, table to table, it was almost everyone’s topic of discussion. We all saw our sister, our aunt, or mother in that story.”

And it is from discussions like that, across tables all over America, that a real national consensus will arise. As New York City activist Marvin Wasserman said in the same story, “We should not develop a ‘community position’ on such an emotional issue based on who shouts the loudest.”

Our “community position” must be based, instead, on the personal and private wishes carried in each of our hearts.

If nothing else, the Terri Schiavo case has stressed for us the responsibility each of us has to make our own wishes known to those who love us and may care for us in our final hours.

It has shown us that we are never too young to make those wishes known.

Whether it is an individual’s choice to fight until the end, as my father did, or request that our lives not be extended by artificial and heroic means, as I have done, we owe it to our loved ones to make our desires clear.

It costs nothing to prepare a living will, and they are recognized in nearly every state. Nor are they only for those who do not want their lives prolonged by heroic means. They are also for those who want caregivers to exercise every trick in their formidable books.

Numerous examples of living wills are available online, at libraries, or at minimal charge from legal professionals. It’s just a matter of filling in the blanks, having the document witnessed and notarized, then leaving it where it can be accessed by family or friends at the appropriate time.

There’s only one thing upon which nearly everyone involved in the Terri Schiavo discussion agrees. If she had prepared a living will formalizing her wishes, the quality of her last years would have never become a matter for the courts, the politicians or anyone else outside her immediate family.

The manner, and to some extent the time, of her death would have remained a private matter.

And that is as it should be.

Gregory Bean is executive editor of Greater Media Newspapers.