Thirty years later, mother of Karen Ann Quinlan remembers
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WANTAGE, N.J. -Thirty years ago, she was a household name.

Like Vietnam and Watergate, Karen Ann Quinlan became shorthand for a history-changing international discussion. In her case, it was about whether families, rather than doctors, could decide to withhold medical treatment from loved ones, even if death would be the consequence.

After losing consciousness and oxygen to her brain in April 1975, the 21-year-old suffered irreversible brain damage. Her parents' legal efforts to remove her respirator resulted in a precedent-setting state Supreme Court case a year later, although Quinlan continued to survive in a persistent vegetative state until June 1985.

Her mother, Julia, 78, has written a memoir, My Joy, My Sorrow: Karen Ann's Mother Remembers,about how she and her husband, Joseph, became accidental pioneers for patients' rights and hospice care.

Quinlan's manuscript landed on the desk Mary Hackett, an editor at St. Anthony Messenger Press, as the legal battle over Terri Schiavo's end-of-life wishes was raging. ''The idea of the right to die was getting a lot of talk, and [Quinlan's manuscript] just happened to arrive at that time. Everyone was drawn into the story, which was really about a spiritual journey.''

Quinlan insists, though, that writing her memoir had nothing to do with the Schiavo case.

In its spareness, My Joy, My Sorrow underscores the contrast between the Quinlans' case and that of Schiavo. Schiavo's parents, until their daughter's death in March after 15 years in a persistent vegetative state, sought media attention; the Quinlans shunned it. The enduring image of Schiavo is a brain-damaged woman staring from a hospital bed; Karen Ann Quinlan's remains a studio photograph from her high-school yearbook.

It was the night of April 14, 1975, when 21-year-old Karen, went out for drinks with friends. But she had also taken the drug Valium and passed out. A friend helped her home to her apartment, laying her down on her back. Quinlan said her daughter apparently aspirated vomit into her windpipe, cutting off oxygen to her brain for at least 10 minutes before receiving emergency treatment.

Apart from one fleeting moment a few days after Karen was hospitalized, there was never any sense that Karen recognized her family or was aware of her surroundings, Quinlan said.

By late May, doctors concluded that Karen would never recover. The family decided it was time to remove her from the respirator, knowing it probably would mean death.

''You pray for miracles,'' Quinlan said. ''Life is special. You should do everything possible to extend a person's life, but there is a time for each of us to die.''

They had the support of their parish priest, the Rev. Tom Trapasso, now a retired monsignor. ''They didn't want her to die, but to return to a natural state,'' Trapasso recalled recently. While he opposes euthanasia and suicide, he said, ''We have a right to decide how we should be treated.''

The Quinlans told Karen's doctors, and Joseph Quinlan signed documents releasing them from legal liability, but the hospital's lawyers balked. In September, lawyer Paul Armstrong filed a lawsuit on the family's behalf.

While popular opinion supported the Quinlans' request, the judge did not. An appeal to the New Jersey Supreme Court was successful in March 1976, with a 7-0 ruling that the family's right to determine Karen's medical treatment exceeded that of the state.

About six weeks later, doctors began to wean Karen from the respirator, and the family kept vigil. But she breathed on her own for another nine years. On June 11, 1985, Karen died of pneumonia.

''Today, we question our doctors about our rights. We have the advance directives and living wills that I hope young people have filled out,'' Quinlan said. ''That's the purpose that Karen's life served, and is still serving.''

Memoir recounts the pain of fighting for daughter's right to die
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