Karen Ann Quinlan's mother says end-of-life decisions are ‘personal, private family' decisions

NEWTON-On March 31, 1976, a group of judges in New Jersey gave Julia and Joseph Quinlan the authority to make the hardest decision they could ever imagine - to remove their daughter, Karen Ann Quinlan, from a respirator in a room at St. Clare's Hospital in Denville. Although Karen Ann Quinlan would live for another nine years, the ruling by the New Jersey Supreme Court set the precedence for end-of-life decisions to be made by guardians. It led to the requirement that all hospitals, nursing homes and hospices have ethics committees. The Quinlan case also led to the creation of living wills. And it has meaning today, 29 years later, in the case of Terri Schiavo, whose husband and parents are locked in a bitter dispute over her end-of-life decisions. "My heart goes out to both families," Julia Quinlan said in an interview this week. "It is a very difficult time. I feel the decision should be made privately. It is a personal, private family decision." Julia and Joseph Quinlan made their decision to remove their daughter from the respirator because they knew that Karen Ann would not have wanted to remain in a vegetative state. "Before the incident, Karen Ann told her younger sister, Mary Ellen, that she would never want to live like her aunt did, who was dying of cancer," Julia Quinlan said. "She would never want her family to suffer." "It was a family decision, including my daughter, Mary Ellen, and son, John, to take her off the respirator as whatever decision we made would also affect their lives," she added. Karen Ann Quinlan died in 1985. Her parents took the proceeds from their book, "Karen Ann: The Quinlans Tell Their Story," to create the Karen Ann Quinlan Hospice in Newton, N.J., which will celebrate its 25th anniversary next month. "You have to keep fighting for what you believe in, particularly when it comes to your children," she added. "It is the most horrible thing to go through, to have your child die before you do. It's so difficult to accept, especially when the process is so slow. "She always was a little fighter," Julia remembered. "We called her our sleeping beauty." Karen Ann Quinlan was 21 and living in Byram Township when she attended a friend's birthday party one evening in April 1975. She had a few drinks on an empty stomach and then went home to sleep off the effects. This once lively and free-spirited woman then slipped into unconsciousness. She may have choked on her own vomit, but the precise reason remains unclear, her mother said. Karen Ann was rushed to Newton Memorial Hospital, where doctors noted there were indications of brain damage and placed her on a respirator. Her condition worsened from coma to persistent vegetative state. Her body regressed to a constant fetal position. There were no indications of recognition and whatever movements she had were strictly reflexive. "Knowing my daughter," recalled Julia Quinlan, "she never would've wanted to live like that." After six weeks of being on the respirator, Julia and Joe Quinlan asked the hospital to take Karen Ann off the respi rator. Initially, hospital officials agreed, but they later reversed their decision. The Quinlans took their case to the N.J. Superior Court and lost. They appealed to the state Supreme Court, which ruled in their favor on March 31, 1976. The decision named Joe Quinlan as Karen Ann's guardian and with that, he was legally able to make "end-of-life decisions" about his daughter. He and his wife chose to release her from the respirator. "It was a slow, weaning process," said Julia Quinlan. "Afterward, her body was so much more relaxed. When she was on the respirator, she was stiff and I could tell she didn't like it." In June 1976, Karen Ann was moved to the Morris View Nursing home in Morris Plains, N.J., where she lived for nine years. Because of the publicity surrounding the case, the town stationed a sheriff's duty at the nursing home to protect her for the first year while she lived there. Her parents never wanted her photo taken in her condition. Reporters tried, though. One person even impersonated a nun to get past security, although that attempt was ultimately foiled. The Quinlans were so adamant about protecting their daughter's dignity and preserving their memory of her as the bright and youthful woman that they had a special metal door with a security alarm installed to her room. Only a select few had the key to enter and exit. Joe and Julia did just that, they visited with her everyday. "In the beginning, I felt she knew I was there," Julia Quinlan said. "Although there was no recognition, it didn't matter because she was still my beautiful daughter." Karen Ann died on June 11, 1985, at the age of 31. Her father passed away on Dec. 7, 1996. The hospice is celebrating its silver anniversary on April 16 at Lake Mohawk Country Club in Sparta, N.J. Family, friends and supporters will be attending in honor of both Julia and her late husband, Joseph, for their unyielding dedication to respecting the wishes and the rights of terminally ill patients and their families. "I have so much to be thankful for," Julia Quinlan said. "It has been a wonderful and rewarding experience to have the privilege of watching the hospice grow over the years." For hospice, home care assistance or for anniversary information, call (800) 882-1117.