NEW YORK — It was a September day nearly 39 years ago when Julia and Joseph Quinlan were married. And it was eight years later, when their little girl Karen Ann came into their lives.
But for a decade, theirs has not been a life style they would ever have envisioned. "No," said Julia Quinlan when she met the press here late last week. "No, it isn't, not hardly."
Ten years ago this April 15, Karen Ann slipped into a coma after consuming a mixture of drugs and alcohol. She never recovered. "She is terminal," her adoptive mother said, calmly. "It is something I have accepted. . . . She's in a chronic, vegetative state." On March 29, Karen Ann Quinlan will turn 31 years old.
Symbol of Debate
Locked in a fetal position, her eyes blank when they are open at all, the girl became the symbol of the national debate over the rights of terminally ill patients. In May, 1976, after a legal battle by the Quinlans that went to the Supreme Court in their home state of New Jersey, the parents were successful in having Karen Ann's respirator turned off. While doctors speculated that the young woman might live a few months, she continued to breathe unassisted. Now, says her father, "her position has stabilized."
Early this year, a new element was added to the Quinlan case when the same New Jersey State Supreme Court ruled that in the case of terminally comatose patients, artificial feeding tubes could be removed. This time the Quinlans said no: They would not ask to have Karen Ann's feeding tube removed.
"She is uncomfortable," Julia Quinlan said, "but you must understand that she cannot feel pain as we feel pain. If she did, it would be impossible for her to survive. As long as we know she is restful, we feel it is not necessary to have her tube removed."
Every day, usually before 6 in the morning, Warner-Lambert pharmaceuticals employee Joseph Quinlan makes the 37-mile drive from home to the Morris View, N.J., nursing home where, for the past nine years, his oldest daughter has been a resident. Though she is completely unresponsive, he talks to her, "and if she is asleep, I pray with her a little." It is a quiet, private ritual, one that makes some people wonder about the purpose of keeping Karen Ann Quinlan alive.
"I guess it would be hard for people to understand," her father said slowly. "But she is in a completely natural state now, and if we took the feeding tube away, we know what would happen.
"We don't consider the feeding tube 'extraordinary means' of support," Julia Quinlan added. And in any case, "we have to feel comfortable about any decision we make regarding Karen, not only my husband and me, by also our other two children."
Dialogue--encouraging relatives to freely discuss tragedies when they hit a family--is the crux of the advice Julia and Joseph Quinlan have offered to the thousands of families who have contacted them over this last decade, wondering how to cope with terminally ill patients in their own families. The mail and telephone calls began soon after their daughter slumped into her much-publicized coma, and accelerated five years ago when the Quinlans set up the Karen Ann Quinlan Center for Hope, a hospice that provides free assistance to dying patients.
In an odd way, her parents said, many of those people seem to feel they know Karen Ann Quinlan. "She gets mail," her mother said. "She started receiving birthday cards about 10 days ago."
And the notion of aiding others is what allows the Quinlans to ignore suggestions that they are exploiting their daughter's plight. A "generous contribution" to the hospice, for example, was what persuaded the Quinlans to talk to the Ladies Home Journal for a forthcoming article.
Talking to the families of terminally ill patients, "I always stress to every family that you have to be comfortable with the decision you make," Julia Quinlan said. "You have to make your own decision, and it's different in every case. It's something you're going to live with for the rest of your life.
"I urge them to seek counsel," she continued, "and to discuss it as a family."
Opening the national discussion about death, about living wills and the rights of the dying patient, is something the Quinlans feel their daughter and the publicity that has surrounded her have helped to accomplish.
"I think it has helped many people," Mrs. Quinlan said. "The expression has been used that we have been pioneers. That's comforting to us, because I know that Karen Ann's life is meaningful."
Even as recently as 10 years ago, her husband interjected, death was not an open subject. "It was like we never died. There were just funeral homes. No one talked about it."
Often the Quinlans address school and community groups about the issue of terminal illness. "You should hear the questions the kids ask," Joseph Quinlan said. "Especially the high school students. Their questions are very complicated, very technical."
Those who face decisions now, such as those that confronted the Quinlans 10 years ago, "have guidelines," Julia Quinlan pointed out. "For us there were no moral or ethical guidelines. Today, people are much more informed about these things than they were 10 years ago."
Still, she conceded, "It is not an easy decision to make. It never is."
A self-described workaholic, Joseph Quinlan fills his time by "completely rebuilding" the home he and his wife moved to not long after Mary Ellen, 28, and 27-year-old John Quinlan left home. "It keeps you occupied," he said. "You just can't sit around all day thinking about it."
As for Julia Quinlan, the days are spent working with the hospice, and "thinking about today and tomorrow. I don't ever think of what could have been."
And of her oldest daughter, Julia Quinlan said, "I hope that she dies peacefully. I would like to be with her in the end. I don't know if that will be possible. I just pray that she will die peacefully."