“If you wish to experience peace, provide peace for another.”
—Tenzin Gyatso, the 14th Dalai Lama
LIFE OFTEN leads you where you least expect to go and where you never imagine you’ll have the courage to prevail.
Looking back 32 years, Julia Quinlan reflects on the day when she and her husband, Joe, were caught in an emotional turmoil. They were trapped in a parents’ nightmare, unable to wake their daughter Karen Ann from the coma into which a tragic accident had plunged her five years earlier and prevent the certainty of her death. Yet through the shared pain Julia and Joe endured, a promise of peace, solace and comfort for others emerged as they worked to create a memorial for Karen Ann. Although the idea was in its organizational infancy in those days, a tiny,
spare hospital office in Newton, N.J., bore a small sign with a big name: Karen Ann Quinlan Hospice.
Embracing the Hospice Movement
In medieval times, a hospice was a refuge on a journey, often in a place dedicated to God. The Quinlans were taking that journey and were still in the process of completing it when the hospice idea surfaced. Through their experiences, they had grown to understand life-or-death struggles and the ethics of prolonging life when there was no hope of recovery. “We wanted to build a memorial to Karen Ann, something that would live on and show that her short life had served a purpose,” Julia says. “We were drawn to this new movement that had begun in England and was now taking hold in the United States.”
In the planning stages, they traveled to London to meet and observe the work of Dame Cecily Saunders, whose hospice was a home where patients could find joy in their final pilgrimage, celebrate their life and accept the natural state of dying.
By 1975, the hospice movement had come to America with The Connecticut Hospice, Inc., in Branford, Conn. Julia and Joe spent three years carefully observing this facility and others that were emerging and found the opposite of what people might have expected: These were not morbid institutions where patients went to die. Instead, there were joy and laughter. They sensed no fear of death among the residents, only acceptance and a wish to enjoy what time was left to them.
In California, they were introduced to a home-care program that treated the family as a unit, with patients and caregivers supported by a highly trained team of volunteers.
It was exactly what they had sought.
Finding the Right Fit
Although Julia and Joe realized that Karen Ann could not reap the benefits of this movement, it was a place to start. This would be a fitting memorial. Their heads were swimming with ideas, but they needed to know what would be the right fit for their area of northern New Jersey. It was important for doctors and health-care providers to be on board with the hospice concept or it wouldn’t work.
An informal meeting with administrators and staff at their local Newton Memorial Hospital afforded them hope and the small office. Then reality struck. “The risks were enormous,” Julia says, “both financially and emotionally. We had written [Karen Ann: The Quinlans Tell Their Story] about our experiences in trying to liberate Karen Ann from the respirator that doctors insisted she needed to breathe. But it kept me from doing what I wanted most—to put my arms around her.
“The medical reports had concluded that Karen Ann was ‘in an irreversible coma, a persistent vegetative state with no reasonable possibility of returning to a cognitive, sapient state,’” she continues. “We were crushed by this news. We had prayed for her to awaken, but as time went on and her body began to curl into a more fetal position, we accepted the reality that she would not come back to us. Things were different in those days. Doctors felt the need to keep a patient alive, even when hope of recovery had faded. We had to petition the court to allow the respirator to be removed. As Joe said, ‘To put her back in God’s hands, and whenever he’s ready, he’ll take her home.’”
Their efforts prompted international debate. Even when the court granted their wish to remove the respirator, Julia and Joe became the focus of a “right to die” movement. “The fact that Karen Ann continued to breathe for nine years after the respirator was removed showed that we always meant her story to be the ‘right to live,’” says Julia. (Karen Ann died on June 11, 1985.)
“In order to set the record straight, we had accepted a publisher’s offer to write a book about the experience. The profits provided us with the seed money we needed to invest in her memorial—a hospice in her name.”
The Benefits of Hospice
Getting the hospice project started in 1980 proved to be a challenge. “We plunged in anyway,” Julia recalls, “feeling our way, learning as we grew. We started out with volunteer personnel, serving two or three patients in their homes. Now, we are serving the needs of hundreds every month from three different locations. It’s beyond my imaginings.”
The success of the hospice movement largely depended on the cooperation of the medical establishment. Ironically, it took time for doctors to see that just “maintaining life” might not serve that patient’s emotional or physical needs.
Recent studies have shown that the advanced capabilities of ICUs and sophisticated medical techniques can provide patients with a “culture of expectation” that may not end in a cure. Instead, it inspires the false hope of a miracle. Other studies have illustrated the benefits of allowing the patient to choose his or her care when curative medical alternatives have been exhausted.
“We’re all about living,” says Cecelia Clayton, who has been the executive director of the Karen Ann Quinlan Hospice for the past nine years, but a part of the organization for 20.
“In the past, terminally ill patients and their families would focus on dying. No one asked if they wanted to focus on ‘living’ in their own homes, surrounded by loved ones and caregivers devoted to making them comfortable. Often, they were attached to machinery that might keep them alive but not cure them. Thankfully, hospice has now become an option.”
In 1984, the government furnished an impetus to the hospice movement by providing funds through Medicare. The medical profession was coming to terms with end-of-life care, hospital stays and the role doctors felt mandated to play in keeping patients alive once their prognoses were terminal.
Some of the additional services prompted by the legal decision in the Quinlan case have emerged from the Karen Ann Quinlan Hospice. A community outreach program provides assistance, encouraging people to write a living will and an advance directive to decide their own treatment plans while they are still healthy.
Nursing supervisor Beth Sylvester stresses the importance of having patients begin their involvement with hospice early enough to experience its “healing” qualities.
“It gives us time to educate them and their family about the dying process,” she says. “It mitigates the fear and allows them to enjoy the last days of life in a way that celebrates who they are.”
Cooperation of the family doctors is paramount in the process of palliative care, which stresses the relief of physical and emotional pain. The goal becomes to treat the patient, not the disease.
“In this way, we are able to do what nurses are meant to do,” Sylvester continues—“provide true bedside care. In the end, we have a feeling of accomplishment, not loss. We have given the care that the patient chose and sustained family members through one of the worst periods of their lives.”
The family support doesn’t end with the passing of the loved one. Even though it was anticipated, the feeling of loss can have lingering consequences for the family.
Diana Sebzda, director of bereavement services, describes the offer of emotional aid that is provided for family members for 13 months after the client has died: “We follow up with calls and notes to offer our assistance. Often, the emotional trauma doesn’t occur right away. Group sessions seem to offer the most solace and encouragement. Movie nights with a focused theme are often a jumping-off point for good interaction. Actually, our bereavement meetings are open to anyone who has experienced a loss, not only former hospice families.”
According to Sebzda, some of the most fulfilling bereavement sessions are the art-therapy classes for children. “It is difficult for them to verbally express what they are feeling, but the freedom to create things opens them up,” she says.
“Sometimes, we make emotion masks. I am always amazed to hear the questions children have on their minds. They are more perceptive than we think.”
The Joseph T. Quinlan Bereavement Center is named for Julia’s husband, who, before his death in 1996, was able to personally experience hospice care in his own home as he dealt with the reality of cancer.
“After Joe received the blow of knowing his pain was caused by cancer of the spine, he attacked the problem with his usual optimism and vigor,” Julia recalls. “But after surgery, rehabilitation and chemotherapy, he wanted to come home. When the time comes that you must face the inevitable, it doesn’t mean that you have lost hope; your hope is just channeled in a different direction.
“We were ready for hospice, but the doctor was not,” she continues. “I know that too often a patient is entered into the program when it is too late to take full advantage of the services. This is not hospice. It’s a crisis situation. I would not allow this to happen to my husband.
“As the days and months passed, I realized how fortunate I was that Joe had come home to live. We had a chance to talk, have our meals together, say goodbye in a special way. All the while, we were supported by our team of medical professionals and volunteers. The hospice experience was a treasured gift,” says Julia.
A Team Effort
The Karen Ann Quinlan Hospice follows the movement’s model. There is a team for each patient consisting of a nurse, a social worker and a chaplain. Along with this core group, caregivers and volunteers provide household assistance and respite for the patient’s family.
Volunteers have always been at the heart of the Karen Ann Quinlan outreach program. Often, many join after seeing the benefit hospice has been to their own loved ones. Sixteen-year veteran volunteer Noel Balch became a member after experiencing the comfort her husband felt in his final days. It was reinforced by the connection she felt from the hospice staff following his loss. “I have gotten back so much more than I have given,” Balch says.
Director of volunteers Sue Morrow describes the 16-hour training course that prepares her people for this special calling, which clarifies their roles to make sure they are comfortable in them.
“We are all in a family at hospice,” Morrow asserts. “Our team of coordinators meets regularly to assess all the patients’ needs, which I pass on to the volunteers. If they ever have a problem or experience a troubling emotion, we are available to them 24/7.”
The coordinators meet and support each other as well. Recently, they held a workshop with a tai chi instructor, learning the mind-body “meditation in motion” practice that has value in promoting health and reducing stress. “In my 10 years with Karen Ann Quinlan Hospice, I have only had four volunteers drop out of the program,” says Morrow.
Balch agrees that a meaningful relationship develops between the caregiver and patient, as well as the family.
“Although you may be sad at a person’s passing, you have so much satisfaction because you helped them to enjoy their last days,” she explains. “I had one elderly gentleman in his 90s with a heart condition. I was at the house one evening, allowing his daughters to go out. Suddenly, a storm erupted. He was worried about my safety and offered to walk me home!”
At the hospice’s 30th-anniversary celebration in 2010, a documentary that was three years in the making was screened for all the “hospice family” members. Entitled Saying Goodbye, the film features the Quinlans—Julia and children John and Mary Ellen—as they tell their individual stories of Karen Ann’s tragedy. It is hoped that it will debut on public television in the near future.
In 2005, the 30th anniversary of Karen Ann’s accident prompted Julia to write a second book. In My Joy, My Sorrow, she reflects on all that has happened in her life since that day. “I am now able to put things in perspective,” she writes in her author’s notes. “Three decades ago, I could not—the hurt was too deep.”
In recent years, the hospice advantage has moved to nursing homes. There, it works in conjunction with the facility to bring comfort and assistance to match the patient’s needs. Currently, the Quinlan hospice is taking on a new challenge: a separate residence or “home” where patients can receive 24-
“It was the dream Joe and I had from the beginning,” Julia recalls. “Now that we are living in such a mobile society, it becomes even more important to fulfill that need. Often, there are no family members who live nearby or are able to provide full-time support to their loved one.”
The dream has taken an architectural shape with the donation of 9.5 acres of hilltop land with a breathtaking view overlooking a verdant valley. The plans call for each pleasantly appointed room to share that view and contain a space for a family member to sleep if he or she wishes.
“The emphasis will be on family,” Julia says. “We are creating a homelike setting where visitors are welcome at all hours and patient comfort and care are the priority. Our vital fund-raising efforts are under way.”
Looking back over three decades of hospice service, Julia concludes with wonderment on how unlikely her journey has been.
“We have gone from three patients a day to more than 100,” she recalls. “It’s more than we could have imagined. I am so grateful to God that I’ve lived long enough to see it all grow. Karen Ann’s situation changed the way people looked at life and death, giving us the right to live and die with dignity. So much good has followed that tragedy. Joe and I were comforted by that fact. The memorial we set out to create to our daughter now has a life of its own. It should serve as her legacy for generations to come.”
The Quinlans’ Fight for Their Daughter
THE DECISION TO DISCONNECT Karen Ann Quinlan from the respirator was made by her family after much anguish, soul-searching and the assurance by their priest and bishop that their view was supported by Catholic teaching. The case was watched around the world.
On April 15, 1975, Karen Ann fell into a coma. By June it was felt that her condition was hopeless. She was in a persistent vegetative state. On Sept. 12, 1975, Joe asked to be named her legal guardian to make that decision on her behalf. Karen Ann’s primary physician refused to end the artificial support.
Joe had to go to court. By the time the trial began on Oct. 20, 1975, the court had appointed a guardian in Joe’s place. The state attorney general portrayed the case as a challenge to New Jersey’s definition of death as a “cessation of vital signs” and one that could result in a new definition based on “cerebral” or “brain death.”
Since Karen Ann did not have a “flat” electroencephalograph and was able to breathe for short, irregular periods, it became clear that the trial would not center on the New Jersey definition of death, but on the question of her “right to die.”
The court denied Joe’s petition, citing Karen Ann’s life as the single most important temporal quality that she had: “This court will not authorize that life be taken away from her.”
On Nov. 17, Joe filed an appeal with the New Jersey Supreme Court. It agreed to hear th
case on an “accelerated schedule.”
In a unanimous decision, on March 31, 1976, the court overturned the previous decision, ruling that Karen Ann’s “right of privacy” included a right to refuse medical treatment and that her father, under the circumstances, could assume this right in her stead.
Karen Ann’s respirator was removed in May 1976. She managed to breathe on her own and remained in a coma for nine years.
In 1985, the New Jersey Supreme Court ruled that all life-sustaining medical treatment could be withheld from incompetent, terminally ill patients, provided such action was shown to be consistent with the afflicted person’s past wishes.
The case prompted laws recognizing living wills and the right to die in many states and the formation of bioethics committees in many hospitals.