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A Better End Death: Doctor-assisted suicide is not the real issue, insists a physician at the forefront of that issue. The focus, he believes, should be on dying well.

THE BALTIMORE SUN

Almost from the start, Tim Quill was drawn to the dying, to the final days of life that can be so rich with meaning and so dark with suffering. Almost from the start, as a young medical student, he embraced the patients other doctors tried to avoid.

For Quill, death wasn't a defeat or repudiation of his skills as a doctor. Like birth, death was a journey. And over the course of two decades in medicine, Quill has come to see himself as a midwife to the process.

"The promise we make to our dying patients should have three parts," he says. "You won't die alone. You won't die in pain. And we will struggle together to face whatever has to be faced."

It is a promise he has spent a great deal of time explaining to his colleagues. On Jan. 8, his lawyers will explain it to the Supreme Court. Dr. Quill is a lead plaintiff in one of the most important, emotional cases to come before the high court in the coming year. The issue: Physician-assisted suicide.

In this country, the image of doctor-assisted suicide has become synonymous with Jack Kevorkian and his death machines, with brief, clandestine meetings between strangers, with bodies dumped at morgues.

Tim Quill, by contrast, is a 46-year-old, soft-spoken family man who has often known his terminally-ill patients for years. A former hospice director, he talks about death as a complicated process that can take place in small steps over a long period of time. Too often, he believes, the medical world fails the dying by substituting high-tech treatment for personal commitment. Helping people find a way to die well, he says, is as important as helping them fight for recovery.

"There should be nothing darker than the image of people who are so desperate that they go to Michigan to die in the back of a Volkswagen van at the hands of a pathologist after a meeting that lasts two hours," he says. "If that doesn't shake you up enough to say we've got to find a better way, then something's wrong."

The article was called "Death and Dignity, A Case of Individualized Decision Making," and it appeared in the New England Journal of Medicine on March 7, 1991. It was remarkable not only for its description of a doctor's decision to prescribe enough barbiturates to allow a dying cancer patient to take her own life, but also because the doctor identified himself: Timothy E. Quill, M.D., The Genessee Hospital, Rochester, N.Y.

Diane (a pseudonym) was a long-time patient and friend of Quill's. When the 45-year-old businesswoman was diagnosed with acute leukemia, Quill was the one who had to tell her. And he was the one who helped her make decisions about how to respond to the deadly disease. Diane chose hospice instead of aggressive treatment. She clung to life throughout extreme bone pain and months of comfort care before she finally decided to take the pills she had stockpiled with Quill's help. She was careful to die alone so that no one could be accused of helping her commit suicide.

Quill's account of her death was straightforward and clinical in tone. He didn't try to capitalize on its natural drama; nor did he reveal much about his emotions as he watched Diane's deterioration.

Nevertheless, the article provoked an avalanche of reaction. Though other doctors help patients end their lives, physician-assisted death remains a secret practice that few would risk their careers to speak about publicly.

Quill received more than 1,500 letters -- "98 percent" in support of what he did, he says.

"A lot of them included very moving personal stories which made me realize I had tapped into some very strong experiences people had had [with the death of loved ones] and often not talked about."

Prosecutors, however, took a harsher view. Quill was summoned to appear before a grand jury, though it found no reason to indict him.

"I underestimated pretty severely the impact of what I was doing by publishing this," Quill says. "Much of the response was, 'Doctors must not kill. Who is this doctor? Get rid of him!' Before I published the piece, I asked some academic lawyers, 'Am I doing something foolish?' They said, 'You will never be successfully prosecuted.' But what they didn't tell me is that you can go through an intense process not being successfully prosecuted."

The decision to speak candidly about assisted suicide changed Quill's career. Though he still teaches at the University of Rochester and practices primary-care medicine, he has become one of the nation's most eloquent spokesmen for relieving the suffering of the terminally ill.

His testimony helped dying patients in New York who were not on life-support systems win the right to end their suffering with the help of doctor-assisted suicide. The Supreme Court will hear the appeal of this ruling along with another from Washington state.

He seems an unlikely crusader: low-key and firmly part of the medical establishment. Yet he has always been an advocate for the dying. Even before he graduated from the University of Rochester School of Medicine and Dentistry, he developed a course on death and began searching for alternatives to what he sees as the overuse of medical technology in treating dying patients.

The larger process

"I've always been interested in improving care at the end of life," says Quill, a married father of two high school daughters. "The question of assisted dying is a small part of it. The larger process is good care for dying people -- and my heart and soul has been in that a long time."

Still, Quill makes sure he has a "very regular" medical practice. He treats the young and the old, the healthy as well as the dying. He is not, he insists, a doctor who seeks out terminally ill patients.

"I don't want to become a specialist in this," he says.

Cynthia was 37 when Quill told her she had advanced gastric cancer. She was deep into a graduate program in psychology; she was also deeply in love. Although she knew there were no medical treatments to cure her disease, she decided to try a highly toxic experimental therapy to extend her life.

The treatment, which removed her stomach and required heavy doses of chemotherapy, did not work.

Quill recounts her struggle in "A Midwife Through The Dying Process" ($24.95, Johns Hopkins University Press), the stories of nine very different patients who, with Quill's help, choose how to control the end of their lives. Some select aggressive therapy, others refuse it. Some die in hospitals, others at home. Only one of the deaths he describes is a physician-assisted suicide.

Cynthia decided to treat her cancer at home with the "comfort care" of hospice. Fed intravenously, her pain controlled by continuous infusions of morphine, the dying woman was able to have another good month in which she married the man she loved, gave away her possessions and spiritually prepared herself for death.

As her disease progressed, however, her pain increased and was accompanied by uncontrollable nausea. A foul-smelling open wound spread on her abdomen. The amount of morphine Cynthia needed to control her pain clouded her consciousness. Taking less would keep her alert but subject her to severe pain, relentless dry heaves and retching.

She decided she was ready to die.

Quill told Cynthia that he could disconnect her feeding tubes, discontinue her fluids and increase her pain medication to the point of sedation. She would die within five to ten days. It would not be considered suicide because she had the right to refuse treatment and receive adequate pain medication.

"I asked Cynthia if she was afraid and she reiterated something she had said in an earlier conversation: That she was more afraid of this phase of dying than of death itself," Quill writes.

Denied fluids, attended by family and friends, Cynthia finally slipped into a coma until she died.

Although the accounts of Cynthia's death have not inspired outrage, Quill does not see much difference between Cynthia's final days and those of Diane.

"It bothers me that the public discussion on this subject always turns on the method of death," he said. "The simple way of saying it is, 'Stopping life support is always fine and assisted suicide is always wrong.' "

For those who are dying, Quill says, the method of death matters far less than the care they receive as their lives end.

Tim Quill is standing at a lectern in an auditorium at the Johns Hopkins Hospital complex. He's clicking slides and talking to a ,, midday audience of hospice workers, oncologists, psychiatrists, intensive-care doctors and others who regularly face end-of-life crises.

It is up to us, he tells them, to talk openly about the dilemmas we face with our dying patients, to relieve their suffering and to pledge to be there for their final days.

The pledge says, "When you go through this last part of the journey, you're not going through it alone. If it takes you to a place where comfort care tells us exactly what to do, we will do that. But if it takes you down a dark alley to a place where nobody knows what to do, we're also going to go through that process together.

"This is a profound commitment -- and I believe it is what our patients are looking for."

The skeptics

It is an audience that should be naturally sympathetic to Quill's argument -- more sympathetic, perhaps, than nine Supreme Court justices who have never treated patients like Diane and Cynthia.

But there are plenty of skeptics here. While everyone agrees with Quill's goal of making hospice care universally available, many have nightmares about doctor-assisted suicide.

Ruth Faden, director of the Bioethics Institute at Hopkins, the sponsor of Quill's lecture, calls it an issue on which "well-intentioned, morally responsible people honestly disagree."

Paul McHugh, director of the department of psychiatry at Hopkins medical school, doesn't hesitate to reject Quill's position.

"I think Tim Quill is mistaken and misleading," McHugh says. "His stories all add up to the idea that we're not taking care of these patients properly. And I don't think it's true. I know we always make mistakes in taking care of patients, but we do take care of them better than Dr. Quill would have you believe."

McHugh says many terminally ill patients who want to commit suicide suffer from depression, which can be treated. Legalizing doctor-assisted suicide, he fears, will persuade demoralized, isolated patients that their dark perspectives are valid.

"I know Quill's motives are good, but this is a very misguided set of practices that he is proposing," McHugh says. "Opening the door will produce all kinds of trouble."

Questions

He and others at Quill's lecture raised other concerns:

Would the disabled and elderly be pressured into dying because they believed they were unfairly burdening their families?

Could euthanasia become a treatment for Alzheimer's and other incurable conditions?

Would poor people choose death because they had no access to hospice?

Would patients stop trusting their physicians if they knew they could end lives as well as save them? (The Hippocratic Oath states physicians will not provide deadly drugs to their patients if they are asked -- nor will they suggest their use.)

Would the cost-cutting spirit of managed care lead to short-cutting lives?

Quill believes the choice of physician-assisted suicide belongs only to the dying. To guard against abuse, anyone requesting assisted suicide must have a terminal condition with intolerable suffering; the request to die must occur in the context of a meaningful doctor and patient relationship and persist over time; a psychiatrist must decide the patient's judgment is clear; and, most important, the decision must be reviewed by a second doctor who has a lot of experience with dying patients.

"One of the things this whole debate challenges us to do is decide how do we want doctors and nurses to respond to dying patients?" Quill tells his colleagues at Hopkins. "What choices do we want them to have in the circumstances?

"We are on a slippery slope right now. We're making decisions on a daily basis that involve facilitating death. We are couching our actions, sometimes in very gray areas.

"Is it better to do this out in the open?"

Tim Quill gave his answer years ago.

Pub Date: 12/27/96

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