As if rehearsed, Julia and Joseph Quinlan take their places flanking the now familiar, fading photograph of their eldest daughter. Warm but reserved, they sit erect, hands folded, patiently answering questions as they have so many times before. Their words do not come easily. Perhaps it is the well of emotion that they visibly strain to contain, or the fact that, despite a decade of media attention, celebrity still does not come easily to them.
It was 10 years ago this week that, for reasons still medically unknown (possibly a combination of alcohol and a tranquilizer), Karen Ann Quinlan stopped breathing, depriving her brain of oxygen for two 15-minute periods. She was taken to Newton (N.J.) Memorial Hospital, where she lapsed into a coma from which she has not emerged. Nine days later she was transferred to the intensive care unit of St. Clare’s Hospital in nearby Denville. Because of the unprecedented legal battle that ensued, the Quinlans’ now 31-year-old adopted daughter became a symbol for the families of terminally ill patients who seek to allow their loved ones to die with dignity—without prolonging their lives through artificial means.
While Karen’s condition has not changed, her parents are trying to start over. Their other children—Mary Ellen, 28, and John, 27—have been on their own for years. Joseph Quinlan, a department foreman at Warner-Lambert, is immersed in the renovation of the Sussex County house that he and his wife moved into six months ago. Julia, meanwhile, occupies herself with a hospice program for the terminally ill, which the Quinlans began with the proceeds from their book, Karen Ann, co-authored with writer Phyllis Battelle, and the 1977 TV movie In the Matter of Karen Ann Quinlan. Because their daughter’s bills are covered largely by Medicaid, the Quinlans’ medical expenses have been relatively small.
One part of the family routine remains unchanged: visiting Karen, watching her grow weaker, feeling powerless to help. On her recent birthday, March 29, three priests celebrated a Mass in the nursing home room where Karen now lies. Joined by their lawyer and family, the Quinlans sang Karen’s favorite song, Amazing Grace, and listened while Msgr. Thomas Trapasso prayed for “Karen and others like her” before an altar set up on her bedside table.
The Quinlans recently met with Assistant Editor Bonnie Johnson and talked about their long vigil.
The most difficult decision was not the one to go to court, but rather arriving at the point where we agreed with the doctors’ prognosis that Karen was severely brain-damaged and that she was going to die. For the first few days there seemed to be some response from her. She would sometimes cry, and the doctors encouraged us to bring her friends in to talk to her. But then she slipped deeper into a coma, and shortly afterward we began to notice her hands and feet flexing inward, a sign of severe brain damage. We’d stand at her bedside and watch her struggling to release herself from the respirator. When it would shoot a blast of air into her lungs, she would move away from it. At times she would moan. It was a horrible feeling to stand there and know there wasn’t a thing we could do to help our child.
After seeing her like this for two months and hearing day after day from the doctors that there was no hope of recovery, we began to think, “Why are we doing this?” That’s when we asked the hospital to have her removed from the respirator. With the help of Father Tom Trapasso, our spiritual adviser, we resolved that the decision was morally correct. But the doctors and the hospital refused, and we were forced to go to court. We hired an attorney, Paul Armstrong, who suggested that we take an unlisted phone number. We couldn’t understand why. That’s how naive we were.
There was so much public interest, not only here but overseas. The press was always around. One reporter posed as a nun to try to get in to see Karen. Another dressed up as a priest. There were the faith healers who were trying to lay hands on her. As a result the hospital had to post security guards outside her door for most of her 13-month stay there. She was in the intensive care unit, so it was for the safety of the other patients as well. We moved Karen to the Morris View Nursing Home in 1976.
Amazingly, throughout the months the legal case dragged on, we were never really bothered at home. It hurt us, though, when some papers ran stories saying Karen had been taking a lot of drugs and alcohol. She drank only minimally when she lived at home, and we can’t imagine her changing that much in the few weeks she lived in the house she shared with friends. People tried to destroy her reputation, but that wasn’t the issue. The issue was the removal of the respirator.
We won our case on appeal to the New Jersey Supreme Court in 1976. The doctors gradually began weaning Karen off the respirator. It took three or four weeks. When the respirator was removed for good, there was really no change in her except that she seemed more peaceful, but we never anticipated she’d survive [this long] without it.
When most people think of a coma, they think of Sleeping Beauty. But it’s not like that, particularly when there’s brain damage. In Karen’s case her entire brain, except for the brain stem—which controls such functions as breathing, facial and eye movements, and a primitive sense of vision, smell and hearing—was destroyed by the lack of oxygen. As a result Karen will sometimes stare into space, and at other times her eyes will move around, then seem to stare at someone or something. It was frustrating in the beginning when we were desperately looking for signs of recognition. But realistically we now know she can’t see us. She can hear—like a baby, she has a startle reflex—but she cannot comprehend.
We have a radio in her room. We play music and so do the nurses. And we still talk to her, just small talk, but mostly we pray with her. We couldn’t conceive of visiting Karen and not telling her we love her. We brush her hair, and sometimes we put the side of the bed down and hold her. When she was in the ICU at the hospital, we couldn’t get close to her because of the machinery. There were beds on either side of hers. We tried to jar her memory by talking about very personal things—like places we went to on vacation—but there wasn’t any privacy. Now Karen has her own room. We can visit any time and stay as long as we like. We’ve hung some of our favorite religious relics on a banner over her bed. There are flowers, and at Christmas we always put up a small tree.
Karen’s condition has deteriorated over the years. She gets a 1,000-calorie-a-day liquid diet through a nasogastric feeding tube, but she has lost 45 pounds and now weighs about 70 pounds. Her muscles have atrophied, and her knees and arms are rigid and drawn in toward her chest. She is on a waterbed and the nurses turn her every two hours. They put gauze pads on her palms, knees and feet, but she still develops bed sores. She used to get respiratory infections about twice a year, but now they occur every two months and it takes her longer to recover. She doesn’t get antibiotics anymore. She gets Tylenol for any fevers, but short of rubbing her forehead, which seems to relax her, there’s nothing else we can do. Her doctor feels Karen eventually will die from some massive lung infection. There have been times already when we thought that was it, but she’s a fighter. She always was.
When the New Jersey Supreme Court recently ruled that feeding tubes could also be removed from a terminally ill patient, we started getting a lot of calls from the press asking if this would change the care Karen was getting. We discussed it but decided it isn’t something we choose to do. We feel that she is in God’s care, and as long as we can we’ll leave her that way.
Karen is not always on our minds. If she were, we’d both probably have had nervous breakdowns. Over the years we’ve learned ways to keep busy. When Karen went into the nursing home, a traumatic phase of our lives ended, and we started to look for something positive to do in her name. That’s how the hospice program began. It’s a home-care program for terminally ill patients. The program’s fifth anniversary will be April 15, and in that time we’ve served almost 300 families. In a way our prayers have been answered—something positive has come out of this tragedy.
Our family has always had good relationships, but this has brought us even closer. You know, Irish people, especially the men, often don’t show their emotions. They believe it’s a weakness. But now all of us can become very emotional. At times we’ve all cried. Every time Mary Ellen comes to the house, we hug, and even John and his father have hugged every once in a while. It’s something we should have done more often all along.
We try not to think about miracles happening. We know there is no medical hope, but if you believe in God, that has to be an option. We used to think that we were prepared for Karen’s death. Then she developed a serious infection soon after we brought her to the nursing home. That’s when we found out we weren’t prepared. Visiting her has become a way of life. Her father visits every day on his way to work, and the children visit occasionally. She is still a part of our lives. When she dies, there will be no more visits. There will be no more Karen to hold.