Ending Life on Their Own Terms

Robert Boulanger has a vision of death. Not death in the abstract, but his own death. Or, more precisely, his suicide.

It will happen in the morning: “I’m a morning person,” he explains. The California sunlight will stream through his bay window, bathing his apartment in a warm glow. He will be surrounded by his paintings and his music; the crescendos and quiet strains of Richard Strauss’ “An Alpine Symphony” will fill the room.

He will be in bed, his body weakened by AIDS. His cat, a 12-year-old Abyssinian named Cruiser, will be curled up beside him. A few friends will be on hand.

His physician will have written him a prescription for barbiturates. The 55-year-old artist and former gardener will say a few short goodbyes, then slip himself a lethal dose of the pills and drift off into a numbing, everlasting sleep.

As a gay man with AIDS in San Francisco in 1996, Boulanger is not worried that his plan--which requires a doctor’s help to end his life--is illegal. He does not expect to flee the state to see Jack Kevorkian, Michigan’s infamous death doctor. There will be no need.

“I know that there is help available here,” he says. “There is an underground. When I need it, I will find it.”

Indeed, while the U.S. Supreme Court prepares to weigh in on the controversial issue of whether physicians may help terminally ill people die, a suicide underground has operated for more than a decade among San Francisco AIDS patients, their doctors, their lovers and their friends.

Elsewhere, the delicate questions surrounding euthanasia--Does it violate the Hippocratic Oath? Will it set society on a slippery slope toward legal murder?--are being picked apart by lawyers, doctors and ethics gurus. But here, at Ground Zero of the nation’s AIDS epidemic, theory meets reality.

All the ingredients for such an underground are here: A city with a liberal bent. A disease whose prognosis is grim, although new drugs offer new hope.

A close-knit, informed group of patients who have cared for enough dying lovers to know what the future holds. A specialized corps of doctors who know when the end is near and thus feel comfortable helping to speed it along. A safe legal environment; there has not been a prosecution for assisted suicide here, at least in the last quarter-century.

“The AIDS community is doing a social experiment,” says Lonny Shavelson, a Berkeley physician and author of “A Chosen Death.” “There is the understanding that nobody is going to be prosecuted, so what you have is a situation that looks like legalization.”

Margaret Battin, a University of Utah medical ethicist, says the AIDS experience has provided “a model” for how assisted suicide might work across a spectrum of terminal illnesses, if it were legal. In a recent article, she discussed the San Francisco underground. “This horse,” she wrote, “is out of the barn.”

The underground has fostered a push for legalization, so strong that opponents feel outgunned. “I’m a lonely voice; I understand that,” says Wesley Smith, an Oakland attorney and consumer advocate who argues that patients need better care at the end of life, not doctors’ help in dying. “These people,” he says bitterly, “are making some very wrong decisions.”

New AIDS drugs bring hope, Smith says. It is no time to condone suicide. “How many people are dead today who might not have died had they hung in and started receiving these new therapies?”

Yet in a survey last year of 118 San Francisco doctors who specialize in treating AIDS, 53% said they had helped patients commit suicide by writing prescriptions for narcotic overdoses. By contrast, a survey of all doctors in Oregon--where voters approved assisted suicide--found that just 7% had helped patients die. (The ballot initiative passed in 1994 but a federal judge in Eugene has blocked the law from taking effect).

Meanwhile, in a survey of AIDS nurses in San Francisco, 15% acknowledged helping patients plan their own deaths. Two-thirds said they would be willing to give patients information on suicide.

Here, it is not uncommon for dying men to bequeath their narcotics to sick lovers and friends, who might make use of them later. For years, Boulanger says, he hoarded morphine, 14 little purple pills left by a lover who had died.

“I wanted to be ready,” he says, “for everything and anything.”

*

One need not foray very deep into San Francisco to find a witness to suicide. Often, witnesses say, these “hastened deaths” are tender, peaceful occasions, quite like what Boulanger envisions. There have been last suppers, bittersweet toasts and poetry readings.

Betty--who did not want her last name used--can testify to this. In May, she flew from her North Carolina home to be at the bedside of her 35-year-old son, Buddy, who was dying of AIDS.

He was in terrible pain. His doctor made a house call; they talked about an overdose. Calmly, the doctor described what would happen: Buddy’s body would turn gray. He might gasp. This is normal, the physician told the mother. Your son will not be suffering.

A week later Buddy said, “Today is the day.” That evening, a friend came to visit. The dying man made a toast to his mother, then took his pills with hot tea and lemon. The friend read children’s stories; Buddy took his mother’s hand. They sat that way for five hours, until his breathing stopped.

“When he took the final breath he had the most beautiful look on his face,” the mother sobs. “It was wonderful, complete relief.”

Her son’s biggest worry, Betty says, was that the drugs would not work. It is not an ill-founded fear. With patients swapping ill-tested recipes for lethal drug cocktails, and with no supervision from doctors, attempts at suicide can go terribly awry. “They are constantly botched,” says Stephen Jamison, a psychologist and former regional director for the Hemlock Society of Northern California.

He chronicled 140 assisted suicides--witnessing several--in researching his 1995 book “Final Acts of Love: Families, Friends and Assisted Dying.” The majority involved AIDS patients. One, he says, will haunt him forever.

The dying man had made a pact with his father: If the pills didn’t kill him in an hour, the father was to suffocate him with a plastic bag--a method described by Derek Humphry, the Hemlock Society’s founder, in his book “Final Exit.” The hour passed. The father readied the bag. Jamison watched, horrified.

“I tried to figure out what to do,” he said. “I finally decided that I was going to intervene verbally. I said, ‘This is not good for you to be involved. You are his father. The last image of your son shouldn’t be of your son asphyxiating by your hand.’ He said, ‘No, I promised him, I promised him.’ ”

The father persisted, suffocating his son. “This killed the father emotionally,” Jamison says. “He has not done well ever since then.”

There is no way of counting the suicides in San Francisco’s underground. Of the 140 tracked by Jamison, 125 were certified as natural deaths, a signal to the medical examiner that no autopsy is needed. The rest were listed as suicide, with no mention of help.

Dr. Boyd Stephens, San Francisco’s medical examiner for 26 years, says he occasionally has brought evidence of assisted suicide to a grand jury or the district attorney. But there have been no indictments or prosecutions.

“I do believe that some of them are happening,” he says, “but we have not really proven any, certainly not for the level of proof we need to take to court.”

If he had proof, he says, he would prosecute. But another doctor, who has kept information about assisted suicide to himself, tells a different story.

“It’s kind of a dance,” this doctor says, “because a lot of times the coroner doesn’t want to know. . . . It’s a political thicket, the issue of assisted dying. They’d rather not get involved.”

That he would not be identified is no surprise. If it seems that everyone in San Francisco is talking about assisted suicide, there is one group where the topic remains taboo: physicians.

The survey that found more than half of San Francisco AIDS doctors had helped patients die revealed that hardly any had consulted colleagues. Yet 59% reported a need for more consultation.

“We don’t talk about it,” says Dr. Robert Brody, head of the ethics committee at San Francisco General Hospital. “We talk about it with our very close colleagues, but we don’t talk about it in a wider circle, for obvious reasons.”

One who did talk--and felt the consequences--was a colleague of Brody’s, Dr. John Stansell.

As medical director of San Francisco General’s AIDS clinic, Stansell is one of the city’s most respected AIDS doctors. In an interview with the San Francisco Examiner last year, he acknowledged writing prescriptions for opiates and barbiturates for several patients who were near death.

“The simple fact,” the newspaper quoted him as saying, “is that there are some patients for whom we cannot make death a tolerable process.”

According to Brody, Stansell received a pointed warning from his bosses at UC San Francisco, with which the hospital is affiliated: Watch your words, because what you have done is illegal. If you are prosecuted, we cannot back you.

Stansell has not given another interview since.

This atmosphere of forced secrecy troubles Brody. Along with the San Francisco Medical Society and a group of hospital ethics committees from across the Bay Area, he is trying to draft guidelines for the practice of assisted suicide, should it become legal.

“If it’s right,” he says, “it should be out in the open.”

There are plenty of questions to grapple with. Should the practice be limited to patients with less than six months to live, as a Washington state case pending before the Supreme Court would require? What about people with degenerative illnesses who might live longer?

Should patients be required to ask several times for help? Should there be a waiting period? Review by an ethics board? A mental health evaluation to make sure the patient is not depressed? Will regulation backfire, creating a bureaucracy that drives the practice even further underground?

Although the California Medical Assn. and the American Medical Assn. are staunchly opposed to assisted suicide, Steve Heilig, executive director of the San Francisco Medical Society, says guidelines are necessary:

“The idea is that . . . there should be some guidance offered, perhaps a community standard, rather than leave it to secrecy where people like Jack Kevorkian do whatever they want.”

*

In the meantime, the underground flourishes.

Several years ago, Boulanger went looking for it. Richard Wagner became his link.

A former Catholic priest--Wagner was thrown out of the church, he says, when he pressed for an openly gay ministry. He is now the founder and sole employee of a tiny nonprofit organization called Paradigm dedicated, as its brochures proclaim, to “enhancing life near death.” Most of his clients are gay or lesbian; many have AIDS.

From his condo overlooking Golden Gate Park, Wagner runs a 10-week program to teach terminally ill people “the practical aspects of dying wisely and well.”

There are sessions on spirituality and intimacy. There is a briefing on legal concerns--estate planning and the like. There is a presentation by a doctor or hospice nurse on what happens as the body closes down. The final segment is on “self-deliverance” or, more bluntly, how to end your own life.

Wagner ticks off the issues that must be addressed: “How to negotiate with a physician about medications. How to involve family or friends. We tell them point blank that to aid and abet someone in a suicide is a felony in this state, so how do you bring somebody on board without jeopardizing them?”

Wagner does not encourage assisted suicide. But neither does he discourage it. He believes it is one way that patients such as Boulanger can free themselves to live without facing the specter of a slow, agonizing death. He estimates that, over the past 15 years, he has attended 50 to 60 assisted deaths. His role, he says, is to witness and to comfort.

Boulanger heard about Wagner two years ago, from the local Hemlock Society chapter. He had been attending a support group there on and off since 1992, when he lost a second lover to AIDS.

Boulanger’s own health was --and still is--fairly stable. He has had one bout with Kaposi’s Sarcoma, the cancer common to AIDS patients. He is often tired, and he has little appetite. But his “viral load,” the measure of an AIDS patient’s health, is relatively low.

Still, he found himself obsessed with death, with the fear that he would waste away in great pain, as both his lovers had.

He began to educate himself. He read “Final Exit” and attended a talk Humphry gave at a San Francisco church. More than 150 people, most gay men with AIDS, packed the room to see Humphry demonstrate his plastic bag method. For a while, Boulanger saved plastic bags.

Even so, he felt uneasy. If the people at the local Hemlock group knew doctors who would help, they wouldn’t name them. “Given the legal situation,” said Sally Shute, the executive director, “we are certainly not in a position to refer names.”

Said Boulanger: “You think they are going to be handing out prescriptions, but they don’t.”

*

At Paradigm, nobody is handing out prescriptions, either. But they are living up to the words of Randy Shilts, the late author of “And the Band Played On,” who once said: “Gay men facing AIDS exchange formulas for suicide as casually as housewives swap recipes for chocolate chip cookies.”

One recent afternoon, some graduates of the Paradigm program--one woman and nine men, including Boulanger--gathered in Wagner’s living room. They talked of their illnesses, then listened to a “touch therapist.”

Bob, a gaunt, frail man, confided that he asked his doctor to prescribe a barbiturate called Seconal, widely considered the suicide drug of choice. The doctor refused.

Ed, a hospice nurse, counseled Bob to change his approach. Doctors--even sympathetic ones--cannot casually prescribe addictive drugs, Ed says. Forms must be filled out in triplicate and reported to the government.

He suggested that Bob tell his doctor he is having trouble sleeping. The doctor may prescribe a mild sedative. On the next visit, Bob would report that the drug didn’t work. After trying other drugs, Bob would ask for something stronger.

By this time, the doctor would have figured out that Bob is speaking in the code of the underground; what he wants is a barbiturate stockpile.

If the doctor feels comfortable, Bob probably would get 10 pills, sort of a suicide starter kit. Then he could try to get more, if the doctor is willing.

On the sidelines, listening with quiet interest, stood Boulanger.

He has set no date for his suicide; his health is not nearly bad enough. He hopes the Supreme Court will make the practice legal, but he is not particularly concerned.

He has made certain his doctors know of his wishes. The underground is his comfort. Just knowing that he can end his own life, Boulanger says, is liberating; it has allowed him to forget about his disease and go on living.

“How much it frees me to know that I can do this is unbelievable,” he says. “It pushes all that stuff away, all that worry about being sick.”