NEWS

Triangle editors: Filene will discuss the book at
7 p.m. Aug. 3 at Quail Ridge Books in Raleigh.

 By LAURA J. TOLER
UNC-CH News Services

CHAPEL HILL -- In one sense, we all begin, live and end our lives the same way: in relation to other people.

The tapestry of relationships surrounding every life engenders the title of Dr. Peter Filene’s new book, his fifth, "In the Arms of Others: A Cultural History of the Right to Die in America."

Each painful deliberation of whether to end life support for a terminal patient matters immensely to a network of people, says the history professor at the University of North Carolina at Chapel Hill. It is these people about and for whom he writes, reviewing dozens of cases in which families and friends faced this ethical dilemma.

"This is not a how-to book," says Filene, a specialist in 20th-century U.S. history. "There are other books on living wills and power of attorney, and I mention those as ways to protect yourself from a situation of a doctor not knowing what you want done.

"Rather, I look at how I work through these issues and how people have experienced them. I hope, as readers go along with me, they also are working on these issues," he says. "They might say, ‘I wouldn’t have done that.’ I’m handling it the way I teach my courses. I’m not trying to give you the answers, but I hope you will work through some of these answers by yourselves."

Since 1975, Filene says, 15 major cases have loomed largest in advancing the meaning of the right to die. His book examines those and references dozens of others, mostly since World War II. Since then, he says, medicine has created more and more ways to keep people alive.

But, historian that he is, Filene went back to the 19th century, there discovering earlier connotations of the world euthanasia, literally, "good death."

"Then, it meant allowing someone to die peacefully, not like Dr. Kervorkian, killing someone."

Filene feels such "real distaste" for the suicide doctor that an editor had to persuade him to add "a few more pages" to his sparing treatment of Kervorkian. "I don’t agree with how he handled his cases," Filene says. "He hadn’t worked with his patients a long time.

"But however distasteful a person he is, he had an impact by putting blatantly in front of us the question: If doctors have a right to let people die, do they have a right to hasten their deaths?"

Filene’s research persuaded him that assisted suicide may be acceptable in some cases. Oregon has become the first state to allow doctors to prescribe a lethal dose of medicine if a patient wants it.

His previous book, the novel "Home and Away," helped Filene hone techniques that make each case in the new book read like fiction. "They all have the confusion of motives and the emotional outcomes that any good novel has," he says.

He also probed the worlds of medicine and law in four years spent researching and writing "In the Arms of Others," published in June by Ivan R. Dee, a Chicago company.

Filene’s previous three nonfiction works examined "Americans and the Soviet Experiment," gender roles in "Him/Her/Self" and men’s roles in light of the women’s movement and subsequent men’s movements in "Men in the Middle."

His new book began with his fascination for the case of Karen Ann Quinlan, who entered a coma in 1975. After her parents obtained court permission to remove her life-support machines, she lived another 10 years. The case sent Filene scurrying to find "five shelves of books by bioethicists. For a year, I dove into all these materials like a madman."

At the height of his fanatical note-taking, his wife, Erica Rothman, a psychotherapist, suggested something more was goading him on. Then the film "Shadowlands," about British author C.S. Lewis’ American-born wife dying of cancer, brought Filene to tears. He realized that Erica, to whom the new book is dedicated, was right.

Filene was subconsciously reliving his mother’s death 20 years earlier at age 60 after her series of strokes.

"I was in my 20s," he says. "I’d just avoided the whole situation." Ultimately, doctors forecasted the outcome tactfully. "It was a way of saying, ‘We’re not going to put her on life support. We’re just going to let nature take its course.’ It was about the right to die, and nobody was talking about that in 1960."

That personal history made "In the Arms of Others" intriguing and therapeutic, but "a hard book to write, emotionally," Filene says. Now, he believes doctors did the right thing.

"I can appreciate more the anguished situation relatives face. My mother couldn’t speak for herself anymore, and in this case, there was no question that she was not going to get better. She was barely conscious.

"Now, we have even more medical miracles and can keep people alive when there’s no hope for them really being here. There are terrible questions relatives have to answer for themselves, though we hope doctors help them."

One of the most poignant cases he examined is that of Nancy Cruzan, 25, rendered vegetative by a 1983 car accident in her native Missouri. In 1989, her parents, Joyce and Lester "Joe," became the first family to advocate the right to die all the way to the U.S. Supreme Court. Because abortion had become a national debate and right-to-life advocates protested outside, the Cruzans faced a different climate than had Quinlan’s family in 1976, when the New Jersey Supreme Court allowed them to disconnect her life support.

Nancy’s parents declared her a vivacious sort who would not want to live permanently unconscious, preserved only by a feeding tube. But Missouri courts had not permitted its withdrawal.

"Nancy’s father was angry -- at the nursing home, for not letting her die, at the courts, for not supporting him, and the right-to-life people who picketed them outside the hospital room," Filene says. "In the end, what he won was the right to let his daughter die, which is hardly victory. But he thought that was the right thing to do and what Nancy would have wanted."

Filene relates in wrenching detail how Nancy’s having been the center of the family twisted lives out of shape after her accident; her mother’s depression; her parents’ near-divorce; her father’s statement, "there were lots of times I thought about killing Nancy and then killing myself."

In June 1990, the Supreme Court rendered a confusing trio of opinions. Predominantly, they said they lacked clear evidence of Nancy’s wishes. The court remanded the case back to probate court in Missouri, where the family prevailed at last -- mostly because an attorney general with political ambitions withdrew the case when polls showed most Missourians supported the Cruzans.

Although right-to-lifers protested and tried to break into the nursing home, Nancy’s feeding tube was disconnected. She died 12 days later, Dec. 26, 1990, at age 33, seven years after being thrown from her car.

In 1996, four days after Filene had finished writing Nancy’s story, he saw a familiar face on The New York Times obituary page. Nancy’s father had hanged himself at age 62. Filene was devastated: "I had followed this man through all his anguish, I had formed a bond with him . . ." he writes. "Did he have second thoughts about what he had committed? Or was there nothing left to live for? Or did the sadness finally eat him up?"

Filene concludes that every case is different, and no blanket rule works for everyone. Federal law and state courts have said the patient must decide. "You and I have to say in advance, ‘I don’t want this treatment,’ or ‘Take me off this machine.’ That is a right, and everybody respects that."

Complications arise when the patient is confused or unconscious and hasn’t made those decisions, or has and relatives find them hard to accept. The Hippocratic oath binds doctors to preserve life, "but what if they know the patient will never recover and they would rather not do another needless CPR or put more tubes into this person?" Filene asks. He says relatives are the people who must believe doctors have done all they can.

Perhaps one of his most rewarding experiences in writing the book was visiting Karen Ann Quinlan’s parents, Joseph and Julia, in their New Jersey home years after her death in June 1985.

"It reinforced my sense of them as being genuine, decent, compassionate people. They took care of their daughter every day for 10 years even though she was not there. Her body was there, but Karen wasn’t there."

They were good Catholics with profound belief in God’s will. They figured this was what God meant to be, that he had his own reasons, and they must do their part.

"It was gratifying to come upon heroes. We don’t have many of them anymore."

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News Service contact: Laura J. Toler, 919-962-8589