Doctors Good At Prolonging Death

The newspaper comes to my doorstep bearing its daily quota of obituaries. A teacher has died at 65. A costume designer at 81. A civic leader at 79. A company executive at 69.

The lives of these people are described as if the death notice were a resume. The causes of death - cancer, heart failure - are included as if disease itself were a flaw in the human system that science has yet to fix.

What is missing from these pages - what is always missing - are the descriptions of how they died. Was the teacher in pain or at peace? Did the executive have a living will and a doctor who listened? Did the civic leader linger attached to a machine? Was the designer’s death one she designed?

I read these pages wondering what would it be like if we listed the way of death as well as the cause of death. Would that make a difference?

Last month, something remarkable happened. The newspapers in this country ran a story about a scientific un-breakthrough. A research project begun with high hopes to test ways of making death in the hospital more humane was pronounced a failure, DOA.

The flop was on page one, 20 years after Karen Ann Quinlan lapsed into a coma. It came after a whole generation of talk about high-tech dying and living wills and the right to die.

When the Robert Wood Johnson Foundation funded this eight-year study, there was a growing consensus among ethicists and doctors about how to change the way of dying. If doctors really were sure of the prognosis of a patient, if they knew what patients wanted and didn’t want, surely there would be less pain, fewer “heroic measures” and more care in the hospital care of the dying.

So this project, called SUPPORT Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments - placed nurses in five teaching hospitals to facilitate these changes. But Project Co-Director Dr. Joanne Lynn says, “We did what everyone thought would work and it didn’t work at all, not even a quiver.”

Half of the patients still died in pain. Huge gaps remained between what patients said they wanted and what doctors did. Living wills didn’t help. There was too little talk, too late. Too many people died alone, attached to machines.

The easy villains of the story would be the paternalistic doctors who remain convinced they know what’s best for the patient even if the patient disagrees. There’s enough truth in that image to make Boston University ethicist George Annas warn that “if dying patients want to retain some control over their dying process, they must get out of the hospital if they are in and stay out of the hospital if they are out.”

A more benign interpretation is that the culture of medicine - from school to training to practice - teaches doctors to regard death only as defeat. Even when dealing with the terminally ill, they talk about life and death decisions when they are really dealing with death and death decisions.

But Dr. Lynn believes that the problem runs deeper than doctors who don’t listen. “This wasn’t a group of doctors dedicated to finding the last possible date on the tombstone. What we learned was that the conspiracy of silence about death was stronger than we expected and the force of habit was also stronger than we expected.”

On a day-to-day basis, neither doctors nor patients were talking about what the patients wanted. They were both following the cultural script, talking about the next chemotherapy, the next procedure. They were patching, fixing, going from crisis to crisis without ever asking, “How can I live well while dying?”

“We are all involved in the dance of silence,” believes Dr. Lynn. Even families go through this painful process wanting one thing: “to pass the mirror test. They want to be able to look at themselves when it’s all over and say I was a decent person.” Close up, that “decency” is still defined as fighting death. But when you stand back from the mirror, as this study does, it’s a sorry reflection.

Hospitals are not the only places where we die. There are hospices and homes. There are, as well, the “tender mercies” of Dr. Kevorkian and the moral ambiguities of doctor-assisted suicide.

But the majority of Americans end their lives in hospitals. As long as hospitals reject a humane role in helping people die, we are failing dismally as doctors, as friends, as family, and as fellow travelers through what the psalmist calls “the valley of the shadow of death.”

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