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Karen Ann Quinlan
1954-1985
"She changed the way
people looked at life and death"
Excerpts by Barbara
Manieri, 2000 |
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"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 25 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.
Order
"My Joy, My Sorrow: Karen
Ann's Mother Remembers" from Amazon.com
Contact Julia Quinlan
via e-mail
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