We’re Slowly Getting Real About Death, Dying

Her brother, she says, shouldn’t have had to die like that. If Debbie Barnes had that night to live over again, she may not have done anything differently. But in a better world, a doctor would have been there to help.

What Debbie Barnes did on the morning of July 5, 1992, was to loyally end her brother’s life. Stephen Michael Barnes, 40, was a heroin addict and criminal who had been in and out of custody since age 9 and had been shunned by much of his family. Certainly Stephen’s brothers and sisters had reason to hate him, particularly after the murder of their father, Richard Barnes. He was killed in 1983 by the Aryan Brotherhood prison gang--their way of paying back their old pal Stephen, who had betrayed the Brotherhood by serving as a jailhouse informant.

For years Debbie shared their hatred. But in the end, it was Debbie who took Stephen into her rented North Hollywood home and nursed him through the ravages of AIDS.

His last night, she says, still haunts her. Distraught over her brother’s misery, frustrated by inconsistent medical care, Debbie felt helpless as Stephen took an agonizing turn. She wiped away the mucous that seeped from his mouth and nostrils; she saw the desperation in his eyes. Weeks earlier, when Stephen was still able to speak, he had asked that he be given an overdose if his suffering became too great. Now the time had come. Debbie dutifully dissolved Stephen’s tiny morphine pills and fed him a spoonful of death.

This is the first time the full nature of Stephen Barnes’ death has been described publicly. Debbie is well aware that authorities may construe her actions as homicide.

“I don’t care,” Debbie says. “I don’t think anybody understands what I went through unless they went through it too.”

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Debbie Barnes wanted to share her experience to make two points. One is her conviction that medical care in the California penal system is an abomination. When Stephen was released from Tehachapi in early 1992, he had an advanced yet undiagnosed case of AIDS. Debbie’s second point is that she is a victim in a society that refuses to be realistic about dying and death.

Euthanasia seems to be getting more and less respect these days. Dr. Jack Kevorkian, now facing trial in Michigan because of his “suicide machine,” has become a staple of Jay Leno’s monologue. But amid the laughter, it’s worth remembering that 46% of California’s voters in November favored Proposition 161, a measure that would have legalized “physician-assisted death.” Some voters objected not to euthanasia in principle, but to a perceived lack of safeguards in the measure.

As it emerges from the closet of secrecy, euthanasia is gaining support among the public as well as physicians who work closely with terminally ill patients. Americans for Death With Dignity is the new name of a Los Angeles-based group that had campaigned for Proposition 161 under the moniker Americans Against Human Suffering. Jack Nichols, the group’s director, says congressional hearings on euthanasia are expected to be convened within a few months. Meanwhile, the group is drafting a new measure to deal with concerns raised by 161, such as a means to address the mental competency of patients and ensuring independent corroboration of their request for euthanasia.

The first concern has to be the patient’s welfare. Dr. Timothy E. Quill, author of “Death and Dignity: Making Choices and Taking Charge,” is an euthanasia advocate who disdains the “superficiality” of Kevorkian’s short-term approach. Kevorkian, he points out, is a pathologist who has no clinical training and little experience in learning from the dying.

Quill is a Rochester, N. Y., internist who made headlines in March, 1991, with an article in the New England Journal of Medicine that described how he helped a leukemia patient end her life by writing her a prescription for barbiturates and telling her how many would constitute a lethal dose.

The patient committed suicide. An inquiry by the New York state medical board cleared Quill of wrongdoing.

Quill suggests that numerous physicians have similarly, but more quietly, helped terminally ill patients hasten their deaths. For all the attention focused on Kevorkian, Quill suggests that more meaningful approaches will emerge from “general physicians, oncologists and AIDS doctors who are struggling with people who are dying.”

Legalizing euthanasia, Quill says, would not necessarily make it a popular option. But doctors would more clearly understand “that part of their role is to help people die better.”

Nichols agrees. Doctors should be prepared, he says, to spare people like Debbie Barnes who are unprepared for such a task.

Physicians, he says, “would know that they were doing their mission in life.”

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The Los Angeles County district attorney’s office in recent years has investigated a handful of alleged “mercy killings,” but there have been no prosecutions. It is a difficult crime to prove and prosecute. Beyond that, there may be some political reluctance to brand grieving friends and relatives as killers. Here’s to the hope that the law pursues genuine criminals and leaves Debbie alone.

In any case, apart from Debbie’s word, there is scant evidence concerning the death of Stephen Barnes. An autopsy is impossible; Stephen’s body was cremated.

His ashes are inside a small box buried in the earth above his father’s casket. It had been Stephen’s request that he be buried beside his father, and his mother, Alice, decided to go along with it. Services were held on a warm, windy summer day. A priest who had visited Stephen the day before his death delivered brief remarks and led a prayer. A headstone marks the grave of father and son. Etched beneath Stephen’s name are these words: “Finally free.”

Some of his siblings, not surprisingly, boycotted the funeral.