Around the dinner table, talk of end-of-life care

The Schiavo case provokes deeply personal questions about living wills and last wishes.

For millions of Americans, the Terri Schiavo case raises the most profound, the most deeply personal, questions. What would they do in such circumstances for their loved ones, and what would they want done for themselves? Put this way, end-of-life care - and beyond that, euthanasia and physician-assisted suicide - become far more than legal abstractions or political debating points.

With longer life spans and medical advances, as well as the increasing attention to problems like AIDS and Alzheimer's - diseases that today are believed to be treatable but incurable - the questions become more relevant for everyone. This is particularly true as the baby boomers enter their advanced years, wanting to maintain as much personal autonomy as possible.

All of this involves not only the nuts and bolts of end-of-life care, such things as hospice treatment and living wills, but deeper questions about human will and cognizance, what defines a "family" (spouse, parents, same-sex partner?), and quality of life.

The definition of "quality of life," of course, varies from individual to individual depending on their religious and philosophical views, family support system, and general outlook, including that ineffable quality called "courage."

Interviewed outside a Kroger grocery store in Nashville, Tenn., building maintenance worker Tony Gray points to the living will forms sitting on the front seat of his truck. He's just picked them up, and he and his wife will talk about it that evening. But he's already made up his mind.

"I just don't want somebody hooking me up to a machine," he says.

Leaving the store with a cart full of groceries, Carey Johnson takes a different view. "It's God's purpose to take a life or not," she says.

"He might have something in store for her," she says, referring to Mrs. Schiavo. "She might get better. She might not. She might touch someone else's life. It's not for us to decide."

When polled, most Americans (63 percent, according to an ABC survey) - including most who identify themselves as conservative, Republican, or religious - support the removal of life support in cases like Schiavo's, whether it's their spouse or their child who appears to have no chance of recovery.

"Polling also consistently shows a majority of Americans support doctor-assisted suicide when a patient has a disease that cannot be cured and the patient requests it," says Frank Newport, editor in chief of the Gallup Poll. Although the American Medical Association officially opposes the practice, most doctors polled recently (57 percent) agree that "it is ethical on the grounds that it may be a rational choice for someone who chooses to die due to unbearable suffering."

Jay Fisher, a doctor from Las Vegas visiting St. Patrick's Cathedral in New York, agrees. "I believe a person should have the right to choose," Dr. Fisher says.

"But the manner [in the Schiavo case] is disturbing," he adds. "I hate to think of someone starving to death. But if they don't want to suffer anymore, a person should be allowed to die."

Boom in living wills

Along these lines, people now are much more likely to write living wills or to name what's called a "durable power of attorney for healthcare." These spell out the degree to which end-of-life care will be provided and who will make the final decisions about continuing or ending treatment. Living will forms are easy to download from the Internet.

There's also been increased interest in finding out about the ways one can end one's own life, should it come to that. "The right-to-die movement has more support than ever," says Derek Humphry, who founded the Hemlock Society and wrote "Final Exit," the best-known text on what advocates call "self-deliverance."

The public family fight over the Schiavo case "is an aberration," says Mr. Humphry. "Thousands of people a year are disconnected from life-support systems and allowed to die." What's more, says Humphry, hospitals around the country increasingly have medical ethicists on staff "to sort out disputes and feelings of guilt" over efforts to prolong the life of a relative.

Beyond cases like Schiavo are questions about euthanasia and physician-assisted suicide.

Oregon's "Death with Dignity Act" specifically prohibits "lethal injection, mercy killing, or active euthanasia." But it allows mentally competent adults who declare their intentions in writing and are diagnosed as terminally ill to take a lethal drug themselves orally after a waiting period. In the seven years since the law was passed, 208 people have taken suicide drugs. So far, Oregon's law is the only one of its kind in the country, but other states - including California - are considering similar proposals.

Euthanasia, in which a doctor ends the life of a patient - either with or without that person's explicit permission - is outlawed in this country. It's legal under certain circumstances in the Netherlands and Belgium. There has been some evidence hat the practice is more widespread than reported - including in the United States.

Discussion around the dinner table

As the Florida case proceeded along its legal and political track, the drama prompted many deeply serious dinner-table discussions.

Like many people these days, Anna Pistorio, says, "I think we're learning how important it is to talk with family early on so you don't have to be in [Schiavo's] situation."

"In this case, I can understand the husband's perspective. But starving to death by removing the feeding tube bothers me," says Ms. Pistorio, a special education teacher in Evanston, Ill. "My dad has said to me, when we visited his mother in a nursing home, 'Please, don't ever let me be in a place like this.' "

Nick Monteleone, a youth coordinator in the Bronx, sees it as a moral and humane issue. "There's got to be something better than letting a person starve to death," he says. "The choice should be a personal and individual one, as long as there are clear instructions." But for him, he says, "In cases where there's doubt, the choice should lie with life."

"If I hadn't left instructions, I wouldn't want someone making the choice to take me off a feeding tube," says Mr. Monteleone. "I'd want to go on living."

While the congressional vote regarding Terri Schiavo lined up along opposing political lines, it also reflected this uneasy ambivalence expressed by many Americans. Rep. Brian Baird (D) of Washington is a clinical psychologist who has worked in Veterans Administration psychiatric hospitals and community mental health clinics - often with patients and their families facing very tough circumstances and life-changing decisions.

"I do not know what to do tonight," he said as lawmakers prepared to vote on the bill sending the Schiavo case to federal court. "I honestly do not."

In the end, Mr. Baird voted for the bill, although it gave him no great pleasure to do so. "Life is tremendously complicated and tremendously fragile and tragic at times," he told an interviewer. "However people voted, I would not question their motives or their compassion for this woman or for the family."

Ann Stein in Evanston, Ill., Amy Green in Nashville, Tenn., and Courtney Allison in New York contributed to this report.

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