Dying: Out of Darkness

A group of medical and theological students, nurses and social workers gathers every other Wednesday in a room at the University of Chicago’s Billings Hospital to learn about dying. The seminar’s instructors are indisputable authorities on the subject. They are all terminal patients in the hospital who have volunteered to share with strangers the last and most terrifying experience of life. Now in its fifth year, the Chicago seminar has vanquished the conspiracy of silence that once shrouded the hospital’s terminal wards. It has brought death out of the darkness. In so doing, it has shown how, and with what quiet grace, the human spirit composes itself for extinction.

The course was the chance inspiration of Psychiatrist Elisabeth Kübler-Ross, 43, born and trained in Switzerland, who joined Chicago’s faculty in 1965. She tells the story in a book, On Death and Dying (Macmillan; $6.95). It began with a visit from four Chicago Theological Seminary students who wanted to do a study of life’s greatest and final crisis. “When I wanted to know what it was like to be schizophrenic,” Dr. Kübler-Ross told her callers, “I spent a lot of time with schizophrenics. Why not do the same thing? We will sit together with dying patients and ask them to be our teachers.”

On Borrowed Time. To her surprise, the psychiatrist encountered stubborn resistance not from the dying but from the quick. The reaction of physicians ranged from annoyance to overt hostility. Once this wall of official resistance was breached, Dr. Kübler-Ross found that the dying themselves were only too willing to talk. In four years the seminar has heard from 150 patients; there have been only three refusals. The author now understands why. “To live on borrowed time,” she writes, “to wait in vain for the doctors to make their rounds, lingering on from visiting hours to visiting hours, looking out of the window, hoping for a nurse with some extra time for a chat, this is the way many terminally ill patients pass their time. Is it then surprising when such a patient is intrigued by a strange visitor who wants to talk to her about her own feelings?” From these feelings, freely given, the seminar has been able to trace the five successive stages of life’s last journey:

> The dying patient’s first reaction is denial: “No, not me.” The response serves an important function. Writes Dr. Kübler-Ross: “It allows the patient to collect himself and, with time, mobilize other, less radical defenses.”

> Denial eventually yields to deep anger: “Why me?” A 50-year-old dentist, dying of cancer, told the seminar: “An old man whom I have known ever since I was a little kid came down the street. He was 82 years old, and he is of no earthly use as far as we mortals can tell. And the thought hit me strongly, now why couldn’t it have been old George instead of me?”

>Resentment is succeeded in turn by bargaining—a campaign, often undetectable, to somehow stay execution of sentence. A difficult patient may abruptly turn cooperative; the reward he seeks for good behavior is an extension of life. The author cites the poignant case of an opera singer, her face consumed by a fatal malignancy, who begged for a chance to sing one last time; thus, death would have to wait. She did —and it did.

> After the bargaining stage, the patient generally sinks into a profound depression. This stage, the author believes, has a positive side. The patient is weighing the fearful price of death, preparing himself to accept the loss of everything and everyone he loves.

> The fifth and final stage is acceptance, when at last the condemned patient bows to his sentence. “I think this is the miracle,” the seminar was told by one woman who had steadfastly refused to accept the fact of her impending death. “I am ready now and not even afraid any more.” She died the following day.

Dr. Kübler-Ross warns that the patient’s final resignation should not be mistaken for euphoria, as it sometimes is. Passivity is a better description: “His circle of interest diminishes. He wishes to be left alone or at least not stirred up by news and problems of the outside world.” The patient’s family often misinterpret this state as rejection. “We can be of greatest service to them,” the author reasons, “if we help them understand that only patients who have worked through their dying are able to detach themselves slowly and peacefully in this manner. It is during this time that the family needs the most support, the patient perhaps the least.”

Even after acceptance of the inevitable, it is the rare terminal case who abandons hope. When that occurs, says the author, death is imminent. In an age in which religious faith seems to be crumbling, hope provides the means of enduring the months and years of suffering and of living with the foreknowledge of death. “I don’t think about dying, I think about living,” said one indignant 53-year-old patient; his losing struggle was then in its 20th year.

Dr. Kübler-Ross concludes that the patient who is not officially told that his illness is fatal always discovers the truth anyway, and may resent the deception, however well meant. Her message is above all for those around the dying patient, and it is one so obvious that it has long been overlooked. The dying are living too, bitter at being prematurely consigned—by indifference, false cheerfulness and isolation—to the bourn of the dead. It is not death they fear, but dying, a process almost as painful to see as to endure, and one on which society—and even medicine—so readily turns its back.