Should a Doctor Help a Patient to the Final Exit?

THE BALTIMORE SUN

*TC The Johns Hopkins neurologist was nearing the end of a busy, routine day at the hospital. He had finished seeing patients and was phoning in his last prescription, a refill for an anti-seizure medication. But the most important medical decision would make that day, one he had sweated over for weeks, weighed heavily on his mind. And now was the moment of decision.

He lifted the receiver and dialed 503-342-5748, the Oregon-based national headquarters of the Hemlock Society, a group that promotes the right of a terminally ill person to choose how and when he will end his own life.

With this phone call, the doctor was divorcing himself from what medical practice officially allows. This would not be a case he would discuss at grand rounds. The resolution of this case would be a well-kept secret. The doctor asked to speak to Derek Humphrey, founder and director of the Hemlock Society and author of the suicide manual, "Final Exit," that topped the New York Times best-seller list last August.

He identified himself to Mr. Humphrey and explained that he had a patient in the final stage of a progressive, fatal neurological illness who wanted to prevent further agony by killing himself. The doctor had agreed to help.

"I frankly don't know how to go about it," the Hopkins neurologist told the suicide guru. "I didn't learn this in medical school."

For all his other patients, the doctor had done the things a doctor is trained to do. Diagnose the illness, treat them, teach them how to prevent certain types of medical problems and, in cases of fatal illness for which there is no known treatment, tell them honestly what to expect and give supportive care.

This case was different. The doctor was asked to assist in a mercy killing. It was that painful, challenging edge where the law, professional training and ethics banged against his human compassion and will to bring mercy and comfort to his patient. There was no known therapy that could halt the relentless ravages of this disease. For weeks his conscience had been a battleground of clashing values. The doctor's human side overcame his professional training.

This article is being written with the understanding that neither the doctor nor the patient will be identified. No facts have been changed, but both the patient and the patient's spouse are given a generic "he" or "his" pronoun that does not reveal whether the patient was a man or a woman. The doctor was willing to be interviewed because he thinks the issue of physician-assisted suicide needs to be discussed publicly and within the medical profession.

How to respond to a patient who wants to die was never touched on in his medical training. The only conversations he recalls about life and death were whether an individual patient should be resuscitated. The doctor said he did not feel he could discuss with other neurologists whether to participate in killing a patient. Doctors just "don't talk to each other about this," the neurologist said. "I can't think of anything else that's similarly guarded. I think it's uniquely secret."

Mr. Humphrey sent the Hopkins physician his book by express mail and indicated one lethal potion that works particularly well -- a combination of a narcotic, a barbiturate and a muscle relaxer that also acts as a sedative.

After talking with Mr. Humphrey, the doctor called the spouse and relayed what he had learned. "We talked about how to minimize suspicion on the part of the funeral home and coordinate it so that I would be in town when the act was done," the doctor said. The spouse called the funeral home and said his spouse was ill and expected to die soon and asked what the funeral home required at time of death regarding the death certificate.

With the full intention of writing a medical recipe for death, the neurologist wrote prescriptions for the three ingredients of the lethal potion and gave them to the patient's spouse. The doctor and the spouse shared the responsibility for helping to kill a patient who was not well enough to commit suicide alone.

The Hopkins physician said his decision did not come easily. While he did not consult his Hopkins peers about the case, he did talk with the patient's other doctors, a psychiatrist and an internist who practice outside Hopkins. "They were both very supportive of this and promised confidentiality," the neurologist said. "We had treated [the patient's] depression over a period of time. It was important to me to be confident that when [the patient] ultimately made this decision, it was being made in as clear an emotional and mental state as possible."

He had also talked out his other concerns with the patient: "that my action may come back to haunt me" professionally or legally; that the spouse may be left with guilt feelings; that the potion "might not work."

"After discussing all these concerns, I told [the patient] I thought it was a reasonable thing for a person in [his] situation to decide to do," the doctor said.

The spouse gave the recommended potion to the patient at their home, left the house for a few hours, and returned to find the patient dead. Someone from the funeral home came to Hopkins Hospital where the neurologist signed the death certificate. He listed as cause of death: "cardiopulmonary arrest" and put down the secondary cause of death as the neurological illness. No autopsy was done.

The Hopkins neurologist's story suggests that physician-assisted suicides are being carried out in the 1990s in the same clandestine way that abortions were done before they were legalized. "What is the big unknown is the extent to which this goes on on an outpatient basis," the neurologist said.

Another Hopkins neurologist, John Freeman, a pediatric specialist who is a former chairman of the ethics committee at Johns Hopkins Hospital, says he does not think it is a common practice. More common, both neurologists agreed, is simply letting nature take its course by not treating pneumonia or other life-threatening complications in a terminally ill patient who wants to die.

Every patient has the legal right to refuse treatment. A person can choose to die naturally rather than have his life prolonged artificially by life-support systems. But legally in Maryland the attorney general's office says there is a sharp line drawn between death caused by allowing an illness to run its natural course without treatment and death caused by a deliberate overdose of drugs or other life-taking measure. In Maryland it is "a criminal act" intentionally to aid someone in committing suicide or intentionally to aid in killing a person who wants to die, according to Jack Schwartz, chief counsel for opinions and advice.

Officially, the medical profession draws the same line. But the line can get very blurry in individual cases. Many doctors say that they will not give a terminally ill patient narcotics or barbiturates with the intention of killing him, but they have no qualms about giving a large dose of morphine, for example, to ease pain and provide comfort, even though they know that the narcotic may have the side effect of shortening the patient's life.

Late last year an incident occurred at the Maryland Institute for Emergency Medicine, known locally as the Shock Trauma Center, that sparked talk among doctors and medical students there.

A senior surgeon referred to the death of a quadraplegic patient as an "execution" and said residents and medical students were asking in the hallways why it was that Jack Kevorkian, a Michigan pathologist who helped three women commit suicide, got his medical license suspended, when something similar was taking place right at the trauma center. The surgeon said the doctors-in-training were asking, "Do we have to do this in secrecy?"

The doctor who helped a patient die refused to talk to a reporter. But another doctor, (not the surgeon) spoke on behalf of the Shock Trauma Center about what happened:

The patient, injured in an accident, was paralyzed almost totally. He could only blink his eyes and make sucking noises with his lips. He couldn't speak aloud, but mouthed the words: "I want to die." His doctors called in a psychiatrist to see if the patient was depressed. The psychiatrist said he was and that the doctors should wait a week and see if the patient still expressed the wish to die. They did and he did.

Doctors, nurses and his family all agreed that he should die. At an appointed time the family came. His doctor unhooked him from a respirator and gave him injections of morphine and pentobarbital. The doctor said he could not breathe enough to sustain himself without the respirator and the drugs were given so that he would not experience suffocation.

"We don't kill patients," the trauma-center doctor said. He would not say what dosage of drugs was given. Doctors are required by law to report all traffic fatalities to the state coroner's office so that the coroner may decide whether to do an autopsy, but the coroner's office said this case was never called in.

The case of physician-assisted suicide in Michigan that made front-page news in 1990 was atypical. Dr. Kevorkian, a retired pathologist, had no patients of his own. He was not responding to a patient he had treated for some time when a woman with Alzheimer's disease killed herself using a drug-dispensing suicide machine that Dr. Kevorkian had invented.

Although there is no law against assisting suicide in Michigan, Dr. Kevorkian was charged with first-degree murder. A judge dismissed the charge, but ordered the pathologist not to assist in further suicides. Last October Dr. Kevorkian helped two more women kill themselves with different types of suicide devices he had developed, and the Michigan Board of Medicine suspended his license. While facing the possibility of murder charges resulting from the deaths of these two women, Dr. Kevorkian last month was at the side of a fourth women who committed suicide by breathing carbon monoxide through a device the doctor had supplied.

Because of the publicity surrounding the Kevorkian case, the board of directors of the Michigan state medical society felt "pressured" to take a stand, according to Howard Brody, chairman of the society's bioethics committee. The board backed a bill that would make assisting suicide a felony.

But last month, the medical society's house of delegates withdrew that support. With one small body of doctors supporting physician-assisted suicide and another small group opposing it, "the house of delegates felt the middle group of physicians, the majority, were torn over this and could see themselves doing this," Dr. Brody said.

Another case of physician-assisted suicide, well known to doctors if not the public, helped the Michigan doctors visualize themselves possibly aiding a patient who wanted to die, Dr. Brody said.

The case came to light when Timothy E. Quill of Rochester, New York, took the unusual tack of writing in the March 7, 1991, New England Journal of Medicine a detailed, poignant description of a patient whom he helped to commit suicide.

The patient had acute myelomonocytic leukemia, a cancer with a 25 percent long-term cure rate. She opted not to have treatment, which would be very toxic and cause much suffering. As the disease intensified, "bone pain, weakness, fatigue and fevers began to dominate her life," Dr. Quill wrote. She said when the time came, she wanted to take her own life rather than linger in a state between pain and sedation. She asked Dr. Quill for barbiturates and he wrote out prescriptions, instructing her how many would bring sleep, and how many death.

Her family knew of her intentions and respected her decision. One day she asked them to leave the house for an hour. When they returned, she lay on the couch, dead. Dr. Quill reported to the medical examiner that a hospice patient had died of "acute leukemia."

He wrote: "Although acute leukemia was the truth, it was not the whole story. Yet any mention of suicide would have given rise to a police investigation and probably brought the arrival of an ambulance crew for resuscitation. Diane would have become a 'coroner's case,' and the decision to perform an autopsy would have been made at the discretion of the medical examiner. The family or I could have been subject to criminal prosecution, and I to professional review, for our roles in support of Diane's choices. . . .

"So I said 'acute leukemia' to protect all of us, to protect Diane from an invasion into her past and her body, and to continue to shield society from the knowledge of the degree of suffering that people often undergo in the process of dying. . . ."

Dr. Quill's article drew attention from both the legal community and physicians. A district attorney attempted to prosecute him, but a grand jury refused to indict him.

Derek Humphrey considers the Quill article a watershed event and says "after that I noticed an upturn of calls from doctors" seeking knowledge to assist in suicides. He said two to three doctors call a month. "The purpose of 'Final Exit' was to help doctors and nurses," he said.

Several polls have shown that a majority of people believe that doctors should be allowed to help those terminally ill patients who wish to commit suicide. But there are also indications that both the public and physicians fear that legalized assisted suicide might lead to a "slippery slope."

Last November a poll taken in the state of Washington the weekend before a referendum on assisted suicide found 60 percent of voters favored the concept. But the referendum itself failed with only 46 percent of the votes. The next assisted-suicide referendum is expected this November in California.

Some American doctors and ethicists are watching an experiment in the Netherlands where the courts have agreed not to prosecute assisted suicide in hopelessly ill patients who voice the desire to die, if certain criteria intended to act as safeguards are met. But Dr. Brody said some disturbing reports have surfaced where patients were being killed who didn't want to die -- evidence of the "slippery slope "when not all doctors adhere strictly to the safeguards.

In the last 30 years much attention has been given making the birth experience as serene as possible. By comparison, little attention is given to the way people exit life. Society and the

medical profession need to take physician-assisted suicide out of the shadows for thorough discussion and decide together if it should be an allowed option in those cases where medicine knows no other way to bring about a peaceful death.

Mary Knudson, a former Sun medical reporter, is a science reporter based in Bethesda.

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