‘Most public case since the Lindbergh kidnapping’

On June 13, 1985, the front page of the New York Times featured some very typical headlines: a spy exchange on a Berlin bridge, the U.S. Navy limiting access to data, the possible identification of Josef Mengele’s body.

Below the fold was a headline out of Morris County about the death of a 31-year-old woman that had ramifications greater than the articles above it.

Karen Ann Quinlan, an adopted child, graduate of Morris Catholic High School, excellent swimmer and skier, had been the focus of a court case with worldwide impact.

Losing a child is the worst thing a person can go through, but Joseph and Julia Quinlan had the added agony of a years-long fight to allow their daughter to “die with grace and dignity,” as Julia put it.

Karen Ann died of respiratory failure caused by pneumonia from respiratory congestion that had been building for months as she lay in a persistent vegetative state.

She survived for 10 years after her parents won the right to remove the respirator that breathed for her. They had been told by doctors that she had no chance of survival, but the medical team refused to disconnect the life-support systems.

Church teachings

Devout Catholics, the Quinlans were told by their spiritual adviser, Msgr. Thomas Trapasso of Our Lady of the Lake Church in Mount Arlington, that Church teachings hold there is no moral obligation to continue extraordinary measures when there is no hope of recovery.

The Quinlans sued for the right to follow their beliefs.

What led to that tragic choice was not an uncommon path for a young girl in the 1970s. Karen Ann had chosen a job over college but financial reverses led to her being laid off and moving from one unsatisfying position to another.

She got involved with what Trapasso, known widely as “Father Tom,” described as a “restless crowd” and moved in with several friends in Byram.

Friends said she had been seen taking some pills on the night of April 14, 1976. The group went to Falconers, overlooking Lake Lackawanna. For many years, it was a popular tavern with the young crowd, with pool tables and a juke box and occasionally a couple of horses tied outside by the cowboys of nearby Wild West City.

Karen Ann reportedly had a gin and tonic and passed out at the bar.

Her friends took her home, and when they realized she wasn’t breathing, they called an ambulance. A friend Thomas French performed cardiopulmonary resuscitation and the ambulance squad gave her oxygen as they took her to Newton Hospital.

She was transferred to St. Clare’s Hospital in Denville where doctors determined that she was in a persistent vegetative state.

Not unusual request

The request by her parents to disconnect the respirator was not unusual, according to that 1985 New York Times article.

But the technological developments in medicine complicated decisions about extending life by artificial means, and fear of litigation unnerved doctors.

The Quinlans hired Paul Armstrong, now the senior health administration fellow and judge in residence at the Edward J. Bloustein School of Planning and Public Policy at Rutgers University. Then, he was a young Morris County lawyer.

The Morris County court appointed a guardian to argue against the Quinlans’ request. The Superior Court judge in Morristown denied the request, but Armstrong argued before the state Supreme Court and won.

The Supreme Court decision touched on freedom of religion (both Roman Catholic and Protestant scholars supported the Quinlans, according to the Times article) as well as on cruel and unusual punishment.

The family didn’t ask that the feeding tube be removed because it wasn’t causing her discomfort, Julia said at the time.

Karen Ann was moved to Morris View Nursing Home, where she remained until her death.

Offers from paparazzi

An employee of Morris View at the time, who requested anonymity, said he and other workers frequently were offered money by paparazzi, who wanted to get a picture of her. Sometimes, it was considerable sums.

John Quinlan, Karen Ann’s younger brother, said in an interview at the hospice that bears her name that paparazzi camped at the family home in Landing and tried to sneak into the nursing home disguised as priests or nuns.

He credits then-Morris County Sheriff John Fox with protecting his sister and the family.

The case was “the beginning of the paparazzi,” he said.

Worse than the paparazzi, John said, were the “true believers,” the people who honestly believed they could hear Karen Ann with a laying on of hands.

“We had to call the police on them,” he noted.

“It was the most public case since the Lindbergh kidnapping.”

He said he and his other sister, Mary Ellen, were grateful they could go away to college and escape them.

They both came back, Mary Ellen first. She is chairwoman of the Karen Ann Quinlan Hospice board of directors. John was out west for a while; now he is director of the foundation at the hospice.

The Quinlans’ tragedy became even more well-known with the publication of a book the Quinlans wrote with journalist Phyllis Battelle. In 1977, the TV movie “In the Matter of Karen Ann Quinlan” was released.

John said the family wound up with $75,000 from the movie, and his parents wanted to do something that would spare people some of the trauma they went through.

Drawing the line

Both of his mother’s parents died in a hospital, “everybody died in a hospital,” John said, “but nobody chooses to die in a hospital.”

“Doctors are trained to treat the hell out of disease until the last minute.”

They pledge to do no harm, but they don’t have a “stop button” on care. This means patients and families need to know where to draw the line, he added.

Medicare rules are very strict. Palliative care, treating only the symptoms, can start with a diagnosis of six months to live. With palliative care, patients can live their last days without going into crisis. And hospice services help patients’ loved ones prepare.

Not only are there more cancer diagnoses today, there are more Alzheimer’s diagnoses as the population ages. The hospice has to be somewhat flexible.

Occasionally, although not often, patients surprise the medical establishment and improve, John said. Also, patients may decide they want to resume treatment.

The need for advanced directives and living wills is emphasized to ease whatever next steps are needed, said Lee Ellison, director of marketing and media at the hospice.

Hospice care may make transitions seamless.

Recently added to hospice care is the death doula, an ancient concept with new training. Ellison said death doulas help families and patients navigate the system and learn their options. Doulas do not need medical training but the hospice does hold classes.

Julia researched the work of Dame Cecily Saunders, one of the founders of the hospice movement.

Nobody listens to a nurse

Saunders was a nurse and a social worker. While working in hospitals in the United Kingdom, she saw that people tiptoed past the dying who pretended to be sleeping.

While taking care of a Polish émigré, she spoke with him about creating a place for dying patients to find peace in their final days. The man left her £500 and she felt God had called her to build a home for them.

However, a doctor told her that no one listens to a nurse. So she went to medical school at age 33, doing a research project to study pain management in the incurably ill and working at St. Joseph’s, a hospice run by nuns.

By 1959, she was drawing up plans for a hospice herself. At first, it was to be a Church of England facility, but she was persuaded that it should be open to others as well. It had 54 beds and offered both respite care and home care service.

Saunders admitted her first patient in 1967.

Julia visited the hospice, St. Christopher’s in London, to learn more about it.

Hospices were rare in the United States at the time, but the National Institutes of Health was starting a demonstration project in Connecticut. The Quinlans sought financial support from local businesses, but Sussex County isn’t exactly full of major businesses.

Selective Risk, now Selective Insurance, and the three local banks - First Hope, Sussex Bank and First National Bank of Sussex - stepped up, Ellison said.

Because there was no Medicare assistance at the time, Karen Ann Quinlan Hospice became the first recipient of a new fundraising idea: the golf outing.

The ideal hospice care is in the home, Ellison said. People want to have their families with them.

However, there are times when that is not possible. For one thing, families may need a break so the hospice can provide respite care. Or the patient may need more care than can be provided at home.

Karen Ann Quinlan Hospice started in two rooms at Newton Memorial Hospital.

Home for Hospice

In October 2014, the Home for Hospice opened on a hill overlooking Water Wheel Farm, a picturesque horse farm in Fredon.

Facilities manager Chris Schroeder conducts tours of the building, which can accommodate six patients.

It is a decidedly non-hospital facility. The rooms have a place for family members to sleep over and an outside door. Each room has a view of the horse farm, and there is a patio to which beds can be wheeled in the nice weather.

Other amenities include a peaceful chapel and a playroom for restless grandchildren. A Girl Scout troop is completing a Silver Award project to provide a seating area just above the farm.

Although meals are provided by Newton Hospital, there is always coffee on and a family kitchen available, Schroeder said. The facility is staffed by nurses and aides as well as the intake and palliative staff.

The Joseph T. Quinlan Bereavement Center recently moved from offices in Andover Township to the Home for Hospice, providing bereavement groups and counseling.

Joe Quinlan died in 1977. Julia is 97, living in Wantage and still on the hospice board.

John describes her as still feisty and still committed to this project.