The Ethics of Dying

IF YOU WERE AROUND the Science Center when a bomb threat cleared out the building, you would have seen a few hundred people standing outside. Most of them were laughing about the threat, how silly the whole thing was, how ridiculous it was that their classes were canceled, or how it didn't bother them at all. They knew the bomb was a hoax, or so they told themselves. But don't let the laughter fool you; they were scared.

No one likes to think about death. In the course of a few decades, America has succeeded in taking the notion of death out of the home, out of the healthy public's mind, and shoving it into the back rooms of hospitals. In the course of a few years, Washington Post reporter B.D. Colen has helped put death--and its controversies--back into the public view where it belongs.

Colen is the Post's medical ethics expert and has written extensively on euthanasia and surgery. He "broke" the Karen Ann Quinlan story with a series of articles for which he received a Pulitzer Prize nomination. Since then, Karen Ann Quinlan's name has become famous, the result of some responsible reporting and a lot of sensationalism. But in Colen's book, Karen Ann Quinlan: Dying in the Age of Eternal Life, he doesn't waste time delving into Karen Quinlan's past or describing her present physical condition in gory detail. Instead, he concentrates on the difficult questions that advancing medical technology has forced us to answer.

"This is not a book about the substance of Karen Ann Quinlan's life," Colen writes. "It is, instead, a book about the meaning of her dying and death." So Colen mentions only in passing that Karen Quinlan mixed drugs with alcohol and lapsed into a coma on the night of April 14 last year. The real Karen Ann Quinlan story began long after she lost consciousness and her parents, Joseph and Julia Quinlan, had given up hope. The Quinlans asked Karen's physicians to remove the respirator that kept her alive--or rather kept her from dying--but the physicians, afraid of homicide charges, refused.

The New Jersey Supreme Court eventually ruled in the Quinlans' favor earlier this year, but not before the story had grabbed considerable attention in the national press. The most interesting fact the news stories revealed was not that Karen Ann Quinlan quit going to church, or that Joseph and Julia Quinlan are parents only by adoption, or even that many "hopeless" comatose patients have recovered; these things only detract from the significance of the Quinlan case. The important discovery was that respirators had been unplugged earlier all over the country--sometimes without even the permission of the families involved. Some doctors say it happens every day.

In such hopeless cases, does the intentional disconnecting of a respirator constitute a murder? Colen says no, because the respirator is not prolonging the life of the patient, it is merely postponing an inevitable death. As simple as that. Don't talk about "quality of life" in the Quinlan situation, he says, because her life has no quality. She will never even reach the level of self-awareness of a mentally retarded child. Don't talk about million-to-one chances, because, in Colen's words, "Medicine doesn't deal with a million-to-one. It deals with what is best for the patient."

After arguing that postponing death by extraordinary means is not what is best for the patient, Colen turns to other significant medical ethics questions.

CONSIDER Colen's bizarre interview with one physician who delivered a severely deformed child: "This monstrosity was breathing," the doctor told Colen.

"Now at that point--talk about value judgments--I took the monstrosity and put it in a bassinet, put it in the corner, and put a sheet over it...By the time we looked the next time it was no longer breathing. There was no attempt to help it breathe or anything."

Did the doctor make the correct decision? It is far from obvious, Colen writes, that the only humane thing to do was to let the baby die, that "quality of life" considerations dictated the doctor's actions. Confronted with a life-and-death decision, most people would stop at nothing to remain alive, Dr. Nathan Schnaper, one of Colen's sources, says. "There's a place in Mexico," he told Colen, "which serves meconium cocktails." Meconium is the feces in the intestinal tracts of infants, and the drinkers believe it will help you live longer.

In each case Colen deals with, he assumes the role of not just reporter, but therapist as well. People often reveal to him things that they had never known about themselves, things that were hidden in their subconscious. Interestingly, guilt is not among the feelings of those who made life-death decisions similar to the Quinlans' last year. They simply believe they made the right decisions.

Two months ago, two Boston hospitals--Beth Israel and Massachusetts General--revealed their policies on death and the ethics of treatment. In considering the implications of that revelation--the first officially stated policy for letting people die--Colen's presentation of death is invaluable; we must each decide if medical ethics are being properly handled. But don't read Karen Ann Quinlan to find out about a comatose New Jersey woman. Colen uses Karen Quinlan, the patient, only to introduce the many unanswered medical ethics questions. He leaves Karen Quinlan, the woman, in peace.