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Terri Schiavo's Legacy

The end may well be more painful for those still living, experts say

FRIDAY, April 1, 2005 (HealthDay News) -- Reflections of Terri Schiavo's death are mirrored in other more, private deaths every day of the year in this country.

Certainly, Schiavo's highly publicized final years, and days, were unusual in many respects. Not only was her family hopelessly divided over her care and future, but her condition -- irreversible brain damage caused by a heart attack 15 years ago thought to have been triggered by an eating disorder -- is not common.

Still, there are lessons to be learned from her ordeal, which ended Thursday morning with her death at a Pinellas Park, Fla., hospice, experts said.

For one thing, losing the desire to eat and drink is often a natural part of dying and does not involve suffering, they said. Although Schiavo did not make the decision to remove the feeding tube that was keeping her technically alive, experts said her death, 13 days after the tube was removed by court order, was not the gruesome one so often depicted in the media.

"It's not horrible," said Dr. Lyla Correoso, medical director of the visiting nurse service of the New York Hospice Program in New York City. "When a person enters into that state, they actually start to release certain substances similar to endorphins, and it gives an anesthetic-type effect so they don't experience discomfort."

"It's very natural that patients at the end of life choose to stop eating and drinking," added Carolyn Cassin, CEO of Continuum Hospice Care in New York City. "It happens in almost every case. The patient begins to relax, doesn't feel hunger, doesn't feel thirst and dies a very, very peaceful death."

It's those still living who suffer more as a patient's food is denied, the hospice experts said.

"As a society, food is our life. That's how we care for people and nurture them," Correseo said. "That's why it's so distressing for this [the Schiavo/Schindler] family and for this entire country. Essentially, we've taken away that nurturing."

Without this activity of caring, family members are at a loss, she added.

Nobody knows how often a feeding tube is removed to aid a person's death in the United States, but Correoso estimates that it happens up to 30 percent of the time. Frequently, this is done with the patient's consent -- either on the spot or through an advanced directive, such as a Living Will.

"In our hospice, this situation happens every day where someone is unable to speak for themselves, but they have given the right to make decisions about their care to someone else," Cassin said.

That seemingly simple issue of advance planning -- such as a Living Will or DNR (do not resuscitate) order -- may be the most important lesson the Schiavo drama taught us.

"The take-home lesson is to talk about wishes with loved one and have an advanced directive," stressed Dr. Joseph J. Fins, chief of the division of medical ethics and professor of medicine at New York Presbyterian Weill Cornell Medical Center in New York City. "That is more than just filling out a form. It's having a conversation."

"It's still the case that most people don't have things written down," added Stephen Connor, vice president for access to end-of-life care, research and international programs at the National Hospice and Palliative Care Organization in Alexandria, Va.

"It's ironic that a public battle within a family like this has probably done more to raise awareness of need for advanced directives than most of things we've done to engage the public in the past five years," he said.

Such a piece of paper, or even witnessed conversations, could go a long way toward easing conflict, which is common when a family member is dying.

"We take care of families that are conflicted every day," Cassin said. "It is not unusual for the impending death of someone that everyone loves and cherishes to be a time of great strife and pain and sadness, especially when someone is very young. But it doesn't usually go to the extent of a court battle," as was the case with Terri Schiavo.

Schiavo's husband and legal guardian, Michael, had successfully argued in court for years that his wife's unwritten wish was to not be sustained by artificial means if the need ever arose. Her parents, Bob and Mary Schindler, had insisted until the end that their daughter might one day get better and that she'd never have wanted to be cut off from food and water.

Perhaps the larger lesson of the case is America's reluctance to acknowledge the inevitability of death.

"We are a death-denying society," Fins said. "Fundamentally, Americans believe that there is always another technology to fix the next illness, and we've been immensely successful.

"But the reality is that we are all frail," he added. "We are all going to die, and human fragility is something that should be embraced and not ignored."

In Schiavo's case, as in so many others, the issue is not whether there was hope for rehabilitation but what an individual would choose, the experts stressed.

"It's always ambiguous. You don't know what kind of effect a treatment is going to have," Cassin said. "We look at what the patient wants to do with their life. That's what's at the heart of this, what Terri would have wanted."

"The issue isn't whether it's clear-cut or not. It's never totally clear-cut," she continued. "That isn't something anyone in the medical profession knows. But what we can know is, 'How do you want to live your life.' "

More information

For more on advanced planning, visit Caring Connections, part of the National Hospice and Palliative Care Organization.

SOURCES: Joseph J. Fins, M.D., chief, division of medical ethics and professor of medicine, New York Presbyterian Weill Cornell Medical Center, New York City; Lyla Correoso, M.D., medical director, visiting nurse service, New York Hospice Program, New York City; Stephen Connor, Ph.D., vice president for access to end-of-life care, research and international programs, National Hospice and Palliative Care Organization, Alexandria, VA; Carolyn Cassin, CEO, Continuum Hospice Care, New York City
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