In the end, Karen Ann Quinlan died sweating and wheezing, an emaciated form curled tightly in a fetal position, comatose, as she had been for 10 long years of celebrity.
Her mother was at her bedside. Her father, sister, lawyer and family priest were in the next room.
"It was a very beautiful moment," the priest, Msgr. Thomas Trapasso, said. "Her mother had just finished saying the Lord's Prayer, and she realized Karen had stopped breathing. Karen had nothing left to struggle with."
In the nursing home room where she had slept for nine years, with its artificial flowers and framed religious pictures, there were "no hysterics," Trapasso said. "They're beyond that. Both parents leaned over and kissed her. Her father stroked her head."
The 31-year-old woman, who died of pneumonia Tuesday night, "moved into the pantheon of American myth," family lawyer Paul W. Armstrong said today, as reporters and cameramen gathered in this placid suburb where Karen was raised. Her parents' landmark 1976 victory before the New Jersey Supreme Court allowed them to turn off the respirator that had helped her breathe for a year after she slipped into a coma resulting from an overdose of alcohol and tranquilizers on April 15, 1975. They wanted her to "die with grace and dignity," they told the court, a principle with which the American judicial system had never dealt.
Despite being pronounced "brain dead" by physicians who said she had no hope of recovery, Karen unexpectedly clung to what life she had for nearly a decade.
Her father, Joseph, visited her twice daily on his way to and from work as a shipping supervisor for a pharmaceutical plant. Although she was fed through a tube in her nose, Karen's weight dropped to 66 pounds. Pulmonary infections, common in coma patients, came more often.
Today, Joseph and Julia Quinlan spent part of the day choosing a casket and making arrangements for the funeral Friday. Through their lawyer, they refused requests for interviews. "Please let us mourn in peace," Julia Quinlan told an Associated Press reporter at the door of her home in Wantage, 40 miles from here. Joseph Quinlan said, "I think there are a lot of lessons to be learned by how far we can go to preserve life." He added, "Death is not so much to be feared. Everything in this world is temporary."
Life, he said, is "a trial."
In an interview, Trapasso, who had known Karen since she was 17 and who was the family's spiritual adviser during their long ordeal, said the last 10 years were "very, very difficult for them. The greatest problem was to get no response from her day in and day out."
Karen was stricken with pneumonia five days ago, Trapasso said. Monday afternoon, Julia Quinlan called him to Karen's bedside. "I gave her the anointing of the sick," he said, referring to the Roman Catholic Church's rite for the seriously ill, sometimes administered more than once. "But in this case, I didn't know how to pray for her healing." Trapasso said Karen's fever reached 105 degrees despite use of medication to lower it. Her blood pressure dropped, and she died at 7:01 p.m. Tuesday.
In recent years, the priest said, the family's involvement with the Karen Ann Quinlan Center for Hope, a hospice they established to provide home care for the terminally ill, had greatly eased their pain.
Centered at Newton Memorial Hospital in Sussex County, the hospice has 14 doctors, nurses and social workers. It was set up with $100,000 that the Quinlans earned from their 1977 book, "Karen Ann," which was made into a television movie. In the last few years, the Quinlans traveled in the United States and Europe, lecturing and raising money for the hospice.
When Karen turned 30 last year, Joseph Quinlan told B.D. Colen, a Newsday reporter and author of another book about Karen, that, on visits to his daughter, "I talk to her, see if there's anything at all I can do to make her comfortable. Sometimes there is. If she's grimacing, there are little things I can do, like moving her feet or combing her hair. It makes me feel good to know there are little things I can do, to see her sleeping peacefully when I leave."
Karen's care at Morris View Nursing Home cost about $30,000 a year. It was covered by Medicaid, with two-thirds state and federal funding and one-third Morris County funding, because Karen was classified as an indigent adult living apart from her family.
Although doctors, families and hospitals for years had made individual decisions ending the lives of terminally ill and suffering patients, the refusal of Karen's doctors in 1975 to remove her from the respirator and the subsequent court suit brought the issue into the open for the first time.
Karen's condition, described by doctors as "a persistent vegetative state," never altered. But she came to symbolize, Trapasso said, "the dignity and value of life. We have created a medical technology where human beings are not human any more. Karen raised the question: Is technology going to enhance human life?"
The New Jersey Supreme Court recently broadened the right to die, allowing feeding tubes to be withheld in certain cases. However, the Quinlans never considered removing Karen's feeding tube, Trapasso said. They took her off of the respirator because being attached to the machine was a visibly painful experience, according to the family.
Armstrong, who brought the original lawsuit as a legal-aid attorney fresh out of the University of Notre Dame law school, said, "Karen left a legacy for science, law, medicine and ethics."
Since the court decision, he said, other court cases have dealt with the issue, and ethics panels have been established in hospitals nationwide to resolve individual cases.
"Karen was someone with whom the American people could empathize," Armstrong said. "They could see their loved ones in the same circumstances."
When the end came, Trapasso said he and Armstrong broke down.
"I was surprised," the 60-year-old priest said. "I didn't know I'd have as much feeling because, from a human point of view, her life had minimal quality. But it was over."