Karen Ann Quinlan
She changed the way people looked at life and death”
—Excerpts by Barbara Manieri, 2000
“Her life served a purpose … there has been so much good after a tragedy.”
—Julia Quinlan, President and Co-Founder
In 1980 Julia and Joseph Quinlan founded Karen Ann Quinlan Hospice in loving memory of their daughter, and for over 30 years it has maintained its presence as the local hospice for area residents. The personal connection between the organization and the people in the community has been the cornerstone of its growth and development. The famous court battle and landmark decision opened the Quinlans’ eyes as to the need for end-of-life care for patients and families, and led to the creation of the hospice that now hosts its administrative office at 99 Sparta Avenue in Newton, New Jersey. The message, “We were started in 1980 by the Quinlan family, and we’re here for your family,” resonates with people seeking hospice. They know that the Quinlan family has been in the very same situation, and that the hospice nurses, counselors, social workers, chaplains, and aides are there for one reason – to help them.
The Tragic Story
On April 15, 1975 at 2:00 am, the Quinlans received a phone call from Newton Memorial Hospital telling them that their daughter, Karen Ann, had been brought to the hospital. She was unconscious, and had slipped into a coma.
Her state steadily deteriorated and very soon her coma was diagnosed to be irreversible. She was shortly thereafter transferred to St. Clare’s in Denville. Her condition was deemed a “persistent vegetative” state from which she would not recover. 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. As time went on, her body began to take on distinctive patterns. Karen would thrash wildly at times, she would blindly resist treatments and the machines she was attached to, yet all the while unable to communicate and respond to voices of her loved ones.
After making the painstaking decision to have Karen removed from life support, the Quinlans then discovered that in order to carry out this personal wish, they needed to petition the court.
A very private family soon found themselves at the center of a public court case which drew national attention. Julia and Joe Quinlan lost their initial court petition in Superior Court, but they persisted, and brought their case before the New Jersey Supreme Court. On March 31, 1976, the New Jersey Supreme Court rendered a unanimous decision appointing Joe Quinlan as the personal guardian of their daughter Karen with the right to determine her medical treatment, including the right to discontinue all extraordinary means of life support.
Working as a secretary for the rectory at her parish, Our Lady of the Lake in Mount Arlington, Julia spent hours talking and crying with the church’s pastor, Rev. Tom Trapasso. She recalled going out on the porch with Trapasso and pouring out her broken heart. “He was wonderful. I don’t know what I would have done without him. He was (and is) a wonderful friend and supporter,” said Julia.
Before that fateful night in 1975, the Quinlans were deemed an average middle-class family living in Landing at the end of Lake Hopatcong. They had moved from West New York in 1953. Julia had suffered several miscarriages and a stillbirth but she and husband Joe, devoutly Catholic, still wanted children. They inquired with Catholic Charities in Peterson about adopting a child. In 1954, the Quinlans adopted a baby girl in Scranton, PA, Karen Ann.
Julia stated that when the baby was handed to her, the nun said, “Although this baby comes to you through us, she is a gift from God.” The baby was very attractive. She never crawled, but pulled herself up on nearby furniture and maneuvered around. At seven months, she was walking. “Karen loved sports, she even taught her younger brother how to play,” said Julia.
“She was so full of life. She had great laughter; it was just contagious. She was just precious,” said Julia with a warm smile. “She was athletic and beautiful; she had a beautiful singing voice and could play the piano by ear.”
After Julia and Joe had adopted Karen Ann, Julia was pleasantly and surprisingly able to give birth to two other children, Mary Ellen and John. Something Joe and Julia thought could never happen.
When tragedy struck in 1975, Mary Ellen and John, just teenagers at the time, had to adjust to the heartbreak.
“They not only lost their sister but lost their privacy,” Julia said. She and Joe tried to keep their other children out of the public eye as much as possible. Reporters were an everyday reality, eventually camping outside the nursing home where Karen Ann finally died. One reporter dressed as a nun to try to gain entry to Karen Ann’s room, Julia said.
Karen Ann’s father, Joe, was a World War II veteran, who worked in accounting at Warner-Lambert in Morris Plains. Julia said he was the last to accept the hopelessness of his daughter’s condition and would visit Karen Ann four times a day. When Joe finally accepted the situation, the family sat down and talked the whole thing out. Knowing Karen as they did, they were concerned that she would not want to be kept alive by machines. They felt for Karen Ann’s sake, it would be best if she was removed from the respirator. “Whatever decisions we made, we sat down as a family,” said Julia.
The Quinlans lost their first round in Superior Court, but were victorious before the New Jersey Supreme Court under the lead counsel of Paul W. Armstrong. The state Supreme Court ruled that Joseph Quinlan be appointed as Karen Ann’s guardian and that whatever decision he made regarding her care “should be accepted by society, the overwhelming majority of whose numbers would, we think, in similar circumstances exercise such a choice in the same way for themselves or for those closest to them.”
After much negotiation between the Quinlans and hospital staff, Karen Ann was weaned from the machine that had pumped air into her lungs for over one year. It took five days. But Karen kept breathing. She was moved to Morris View Nursing Home in June 1976. She was to breathe on her own for another nine years before dying on June 11, 1985 of pneumonia.
“It was most difficult, to watch your daughter die slowly for 10 years,” said Julia. Instead of the serene form depicted in sketches, Karen Ann’s body was being pulled inward in a kind of “fetal” position. All her joints were flexed and despite attempts by physical therapy to straighten out her bent form, her limbs quickly retracted after therapy sessions. There was no way to prevent the bedsores.
“I don’t think you can ever prepare yourself 100 percent for the death of your child,” Julia said. “For 10 years Karen lived in a state of limbo. My family and I lived in a state of limbo. I grieved for Karen for ten years and then I had to grieve all over again.”
“We couldn’t go to visit her at the nursing home any more. I couldn’t brush her hair. I couldn’t talk to her. There was a terrible void. For 10 years it was a way of life, visiting her at the nursing home every day. It was very lonely, very difficult,” said Julia. Karen Ann was buried at the Gate of Heaven Cemetery in East Hanover.
The well-known court ruling “set at precedent for all future cases,” stated Julia Quinlan.
The ruling gave patients and families the right to live each stage of life, including the last stage, with dignity and respect, and for medical institutions such as hospitals, hospices and nursing homes that would now be required to establish and maintain ethics committees. In addition, the Quinlan case led to the creation of the “living will,” sometimes called an “advanced directive,” which outlines the personal wishes of the individual in regard to “extraordinary means” to maintain life.
Fives years after Karen Ann had fallen into the coma, the Quinlans in 1980 opened the doors to the Karen Ann Quinlan Hospice on Newton-Sparta Road in Newton.
Karen Ann Quinlan Hospice Today
Karen Ann Quinlan hospice is now moving close to its 30th year and much has changed since the day it opened its doors and cared for its first patient. The organization, which began out of the seed money from the Quinlan’s book, Karen Ann: the Quinlans Tell Their Story started with only a few staff members. Over time it has grown tremendously. Housed in its own building at 99 Sparta Avenue in Newton, NJ and with offices and services in Phillipsburg, NJ and Pennsylvania, the Karen Ann Quinlan Hospice and Home Health Care now have a staff reaching 100 employees, along with a core of trained volunteers who offer their time throughout the year.
The one element that has not changed is their pledge to serve every patient who requests care, regardless of their ability to pay. In over twenty-five years, not one patient has been turned away because they could not afford care. The fulfillment of that promise is very important to the staff and the Governing Board of the Karen Ann Quinlan Memorial Foundation. There are also many area businesses who have embraced the mission of hospice, and who, throughout the year, actively partner with the agency in holding fundraisers to supplement those uninsured and non-reimbursable patient care costs. Many area businessmen and women also serve voluntarily as Board members, offering their expertise in guiding the organization as it continues to grow.
Not so long ago there was a time when hospice was not even considered as a care option. It is because of the founding of Karen Ann Quinlan hospice, area residents have had a place to turn when they are in need of this very specialized care. In addition to the individualized care of the patient, families receive emotional and spiritual services from social services, bereavement counselors and chaplains, all provided under the Karen Ann Quinlan Hospice umbrella. The grief support provided by the Joseph T. Quinlan Bereavement Center is not restricted to hospice families; it’s made available throughout the community, and to area churches and schools. Throughout the year, memorial events and services such as the Lights of Life Tree Lighting and the Memorial Butterfly Release are held to bring the community together, and to give each person an opportunity to honor their loved ones.
The hospice frequently hears from families who share how Karen Ann Quinlan Hospice impacted themselves and their loved ones. One family wrote, “No words could ever express my gratitude for all that your organization did for me and my family. The wonderful care provided in my mom’s time of need was exceptional. Instead of feeling uncomfortable having strangers come to our home, it felt warm and comforting like old friends coming to lend a hand. You are all very special people and I commend you on a job well done.”
Karen Ann Quinlan Hospice feels privileged to serve so many, and is thankful to have the support and the dedication of the countless individuals, groups and businesses that help make its work possible. Hospice is now looking to the future, to new ways to help people in need of care, and as it does it will continue to maintain its relationships with the people of our community, and with the local businesses that contribute so much.
Initially the hospice occupied an ancillary office at Newton Memorial Hospital, and its small staff, group of volunteers, and generous donors immediately propelled it forward. In 1984 the agency became Medicare Certified, and at that point it was poised to grow enormously. It expanded its hospice services to Warren County in 1988, and opened the Newton administrative office in 1994. In 1998 the Karen Ann Quinlan Home Care & Hospice office opened in Phillipsburg, and in 2000 the Joseph T. Quinlan Bereavement Center opened in Hackettstown.
The hospice is a non-profit agency, with a 501 (c) (3) status. It is governed by the Karen Ann Quinlan Memorial Foundation Governing Board, and is managed by the Executive Director. Department Directors are designated as: Director of Nursing, Director of Bereavement, Director of Social Services, and Director of Marketing and Advancement, and the agency employs over 100 full time, part time and per diem staff members.
The professional team of nurses, counselors, chaplains, social workers, aides and volunteers presently serve patients and families in Sussex and Warren Counties in New Jersey, and the Pike County area of Pennsylvania. Hospice service is available twenty-four hours a day. Karen Ann Quinlan is proud to state that to date, more than 5,000 patients and their families have been served. With an aging population and a growing preference for hospice during one’s final days, and thanks to the dedication of so many, Karen Ann Quinlan will be here to continue to help.
Tim O’Brien, a reporter for the New Jersey Law Journal, covered the Quinlan story for the Star-Ledger. “Now it is an accepted part of the landscape… [It’s] become part of the fabric of society. Ordinary people think about living wills and telling others their wishes about extraordinary means,” O’Brien said, “It’s talked about openly, not furtively.”
“The biggest thing was for society to openly face that issue and deal with it,” he said. “Virtually every court in the country has followed that decision.”
Julia says she is thankful that her family has come through this ordeal intact. She pointed out that many families could not survive the kind of pressure and stress they experienced. Mary Ellen and John “have grown to be wonderful people. They serve on the Hospice board,” she said. They also live in Wantage. Joseph Quinlan died on December 7, 1996 peacefully at his Wantage home under hospice care.
In reflecting over the many years and Karen Ann’s life, Julia said, “Her life served a purpose…there has been so much good after a tragedy.” She said the hospice is designed to assist patients and their families in the final six months of life, but it is not a gloom and doom experience but rather a celebration of life.
“I have no regrets. We would do the same thing all over again. Karen Ann would never, never want to live that way. I thank God we were able to make the decision as a family and still be a close loving family after it all,” she said.
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