One family's struggle to let their daughter die "with grace and dignity."
By: Legacy Staff
4 years ago
Karen Ann Quinlan was 31 when she died in June 1985, but she was lost to those who loved her 10 years earlier, when she fell into a coma from which she never awoke. Her family's legal fight to have her removed from a breathing machine so she could die naturally started a national conversation on death and dying. Her case also changed the way the country practices medicine, introducing the concept of advanced directives such as living wills and establishing ethics committees at medical facilities.
Quinlan's mother, Julia Quinlan, said an important part of her daughter's legacy is lesser known. The Quinlan family started a hospice bearing their daughter’s name in 1980. It is still operational and is expanding, with the Karen Ann Quinlan Home for Hospice expected to open this year in New Jersey.
While Quinlan's struggle and death helped many in profound ways, her mother most remembers her daughter's life.
"It's hard to me to picture Karen turning 60 years old on March 29," Julia Quinlan said in an interview with Legacy.com. "She'll always be that sweet little baby with the dimple in her chin always laughing and always smiling. It's hard to picture her any other way."
In April 1975, the 21-year-old Quinlan lost consciousness after an evening out with friends. It was later determined she had been drinking alcohol and may have taken tranquilizers that night.
Doctors quickly concluded that she had suffered irreversible brain damage and had no chance of recovery. A respirator and a feeding tube were keeping her alive, and it was not a life her family felt she would have wanted. "Unlike the 'sleeping beauty' depicted in newspaper articles and sketches drawn by artists who had never got a glimpse of Karen, she was not resting quietly," according to the Karen Ann Quinlan Hospice website.
In July 1975, Quinlan's parents asked that she be removed from the respirator so she could die "with grace and dignity."
"We asked her to be placed in a natural state so God could take her when ready," Julia Quinlan said.
But it wasn't that simple. The Quinlans had to go to court to take control of their daughter's care. A local prosecutor said removing Karen Ann from the breathing machine would be homicide.
A New Jersey Superior Court judge denied the Quinlans' request, and they appealed to the New Jersey Supreme Court. In 1976 the higher court unanimously reversed the decision, saying that Quinlan’s father – not her doctors or a court – was the authority for deciding her fate in her behalf. The court also ruled that no one could be held criminally liable for removing the life-support systems, because the woman's death “would not be homicide, but rather expiration from existing natural causes,” The New York Times reported.
Before Quinlan fell into a coma, the Quinlans were a quiet New Jersey family, Julia Quinlan said. The court case made them internationally famous. They received thousands of letters from families in similar situations, but little negative feedback, Julia recalled. "Most were from people who were praying for us and for Karen to have a peaceful death," she said.
Karen was weaned from the breathing machine in 1976 and continued to breathe on her own for nine more years. Her parents, devout Roman Catholics, never asked to remove their daughter's feeding tube.
The act of removing the respirator “culminated a case of immense complexity and high drama that absorbed national emotion and debate,” The New York Times said in Quinlan’s obituary. “Ordinary people found themselves wrestling with fundamental questions of life and death, as medical and legal issues blended into sociology and theology.”
The last few years of Quinlan's life were hard for her and her family. The lovely young woman who once weighed 110 pounds shrunk to about half that size.
The Quinlans constructed their lives around twice-daily visits to their daughter and repeated "death watches" as news crews staked out the nursing home with each report of a setback. Julia Quinlan remembers trying to shield her younger daughter and son, then teenagers.
"This was supposed to be the happiest times of their lives and they had to go through this," she said.
But the suffering gave the entire family a calling. In 1980, five years into Karen's coma, her family started the Karen Ann Quinlan Hospice. Both children and Julia remain active in the organization.
"If you are part of a hospice, it’s not a job to you. It's a dedication," Julia Quinlan said. "It wasn't established as a business. It was established in memory of our lovely daughter. … We don't have Karen but her legacy will live on in the hospice that we've created."
Natalie Pompilio is a freelance writer based in Philadelphia. Her lifelong love of obituaries raised eyebrows when she was younger, but she's now able to explain that this interest goes beyond morbid curiosity. Says Pompilio, "Obituaries are mini life stories, allowing a glimpse into someone's world that we're often denied. I just wish we could share them with each other when we're alive."