Three Young Women's Tragedies Changing Nation's Approach to Death
by Robert Tanner, The Associated Press
March 24, 2005
First came Karen Ann Quinlan. Then there was Nancy Cruzan. Now there's Terri Schiavo.
Each time, a young woman was left in a horrible limbo between life and death following a personal disaster: the fateful mixing of alcohol and a tranquilizer; a car accident; a collapse at home and heart failure, possibly from an eating disorder.
Over 30 years, their tragedies not only captured the nation's sympathy and attention, they have spurred new laws, new medical practices and, ultimately, changes in the ways that society views death.
Now every state in the nation recognizes a person's legal right to define how far they want medical care to go if they become very ill - and where they want to set limits. Many doctors make sure to talk with seriously ill and elderly patients about how their life might end. A community of surviving families, lawyers and doctors has been pushing for years to create a path for the end of life that gives as much thought to dying as society does to life's beginning.
"That's the kind of revolution we need in the long run," said Dr. Joanne Lynn, director of the Washington Home Center for Palliative Care Studies. "Some patients liken it to planning the wedding. Here's what we want to happen, and when, and why."
In 1975, Karen Ann Quinlan fell into a coma after mixing alcohol with Valium at a party. The parents of the 21-year-old New Jersey woman went to court to win the right to remove the respirator that kept her alive. Life support was removed in 1976; she lived until 1985 but never came out of her coma.
In 1990, the parents of Nancy Cruzan went to the Supreme Court in the climax of their fight to let their daughter die. She was 25 when she was thrown from her car in an accident in Missouri and suffered brain damage. The high court's decision provided a path for Cruzan's parents to prove her desire not to live in a "vegetative state." A state court agreed with their argument; she died a few weeks after life support was removed.
Terri Schiavo has been in medical care since her heart stopped and she collapsed in her Florida home in 1990, her brain damaged by lack of oxygen at age 26. Her husband began seeking the removal of her feeding tube in 1998; her parents oppose it. Her case spurred Florida lawmakers and Gov. Jeb Bush to pass a state law that let courts reverse an earlier order and kept her fed; Congress passed a federal law after an emotional weekend session that let her parents take their fight to federal courts, and now the Supreme Court has been asked to take up the case.
Quinlan added fuel to an already burgeoning movement to let patients craft their own critical care, rather than a medical community that pursued life at all costs. Their effort took the form of a living will, a document that aims to tell family, doctors and other caregivers how far to go to keep a patient alive, if he or she can't communicate.
Today, all 50 states allow for some form of living will or other kind of advance directive. They may include a power of attorney that allows a surrogate to carry out a person's wishes or oversee their care.
Cruzan's case, through the nation's top court, enshrined the idea that a person could be permitted to die - if there was evidence that was what he or she wanted.
"In other words, Cruzan basically created the constitutional right to make your own decisions. You could call it a constitutional right to die," said Theodore Falk, an attorney who helped craft Oregon's living will statute.
Her case also inspired a federal law in 1991 that requires hospitals and other care providers to inform patients of their state's laws about end-of-life care and advance directives.
The long-term impact of the Schiavo case remains to be seen, of course, but few doubt the power of her story.
"It's cases like this, tragic as they are, that get people to think," said Dr. Cecil Wilson, a Florida internist and trustee of the American Medical Association.
One development in recent years is that the "choices in dying" movement has grown increasingly doubtful about how well living wills really work. Relatively few people choose to create them - some estimate one in four or less; the documents are often so vague that they can't anticipate many possible end-of-life situations; and state laws often lack enforcement power if any physician fails to honor a living will.
"In this day and age, you really need a backup advocacy plan," said Barbara Combs Lee, who works to expand rights of the terminally ill with the Compassion in Dying Federation. "Someone to call, someone to coach you, someone to be there at the bedside to help frame the issues, help clarify the desires and then go to court if necessary."
The debate sparked by the three young women is taking place against the backdrop of an aging Baby Boomer population and medical advances that are allowing people to live longer - meaning that more and more people will confront death that comes at the end of prolonged health problems.
Lynn argues that both individually and as a nation, more needs to be done to prepare for that.
"Most people live rather comfortably right up to the end. But we haven't rearranged our care systems so they serve this population well," she said.
The Schiavo case, like the ones that came before, may drive change.
"There's a slow evolution," Lynn said. "We could certainly speed it up if we just focused on it."
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By Faith Enoch was translated that he should not see death: and was not found, because YAHUVEH had translated him: for before his translation he had this testimony, that he pleased YAHUVEH. Hebrews 11:5