Elisabeth Kübler-Ross, MD—RIP

I first confronted death and dying with the terminal cancer illness of my father, Bob Sapper. My father faced death bravely and I pray for the grace under pressure to do the same. If this is (fair & balanced) thanatology, so be it.

[x NYTimes]
Dr. Kübler-Ross, Who Changed Perspectives on Death, Dies at 78
By HOLCOMB B. NOBLE



Dr. Elisabeth Kübler-Ross, in 1970.  

Elisabeth Kübler-Ross, the psychiatrist whose pioneering work in counseling terminally ill patients helped to revolutionize the care of the dying, enabling people all over the world to die more peacefully and with greater dignity, died Tuesday at her home in Scottsdale, Ariz. She was 78.

Family members told The Associated Press she died of natural causes.

A series of strokes had debilitated her, but as she neared her own death she appeared to accept it, as she had tried to help so many others to do. She seemed ready to experience death, saying: "I'm going to dance in all the galaxies."

Dr. Kübler-Ross was credited with ending centuries-old taboos in Western culture against openly discussing and studying death. She set in motion techniques of care directed at making death less dehumanizing and psychologically painful for patients, for the professionals who attend them and the loved ones who survive them.

She accomplished this largely through her writings, especially the 1969 best-seller, "On Death and Dying," which is still in print around the world; through her lectures and tape recordings; her research into what she described as the five stages of death, based on thousands of interviews with patients and health-care professionals and through her own groundbreaking work in counseling dying patients.

She was a powerful intellectual force behind the creation of the hospice system in the United States through which special care is now provided for the terminally ill. And she helped to turn thanatology, the study of physical, psychological and social problems associated with dying, into an accepted medical discipline.

"Dr. Elisabeth Kübler-Ross was a true pioneer in raising the awareness among the physician community and the general public about the important issues surrounding death, dying and bereavement," said Dr. Percy Wooten, president of the American Medical Association. He said much of her work was a basis for the A.M.A.'s attempts to encourage the medical profession to improve the care patients received at the end of life.

The A.M.A was one of her early supporters, though many of its members at first vigorously opposed her and attempted to ostracize her.

Florence Wald of the Yale School of Nursing said that before her research "doctors and nurses had been simply avoiding the problem of death and focusing on patients who could get better." She said, Dr. Kübler-Ross's "willingness and skill in getting patients to talk about their impending death in ways that helped them set a profoundly important example for nurses everywhere."

In the later part of her career, she embarked on research to verify the existence of life after death, conducting, with others, thousands of interviews with people who recounted near-death experiences, particularly those declared clinically dead by medical authorities but who were then revived. Her prestige generated widespread interest in such research and attracted followers who considered her a saint.

But this work aroused deep skepticism in medical and scientific circles and damaged her reputation. Her claims that she had evidence of an afterlife saddened many of her colleagues, some of whom believed that she had abandoned rigorous science and had succumbed to her own fears of death.

"For years I have been stalked by a bad reputation," she said in her 1997 autobiography "The Wheel of Life: A Memoir of Living and Dying." "Actually, I have been pursued by people who have regarded me as the Death and Dying Lady. They believe that having spent more than three decades in research into death and life after death qualifies me as an expert on the subject. I think they miss the point. The only incontrovertible fact of my work is the importance of life. I always say that death can be one of the greatest experiences ever. If you live each day of your life right, then you have nothing to fear."

Whatever scientists feel about her view of life after death, they continue to be influenced by her methods of caring for the terminally ill. Before "On Death and Dying," terminally ill patients were often left to face death in a miasma of loneliness and fear because doctors, nurses and families were generally poorly equipped to deal with death.

Dr. Kübler-Ross changed all that. By the 1980's, the study of the processes and treatment of dying became a routine part of medical and health-care education in the United States. "Death and Dying" became an indispensable manual, both for professionals and for family members. Many doctors and counselors have relied on it to learn to cope themselves with the loss of their patients, and face their own mortality.

Her early childhood may have been the "instigator," as she put it, in shaping her career. Weighing barely two pounds at birth, she was the first of triplets born to Ernst and Emma Villiger Kübler on July 8, 1926 in Zurich, Switzerland.

She might not have lived, she wrote, "If it had not been for the determination of my mother," who thought a sick child must be kept close to her parents in the intimate environment of the home, not at a hospital.

But there were moments in her childhood in a farm village when she saw death as both moving and frightening. A friend of her father who was dying after a fall from a tree invited neighbors into his home and, with no sign of fear as death approached, asked them to help his wife and children save their farm. "My last visit with him filled me with great pride and joy," she said.

Later, a schoolmate died of meningitis. Relatives or friends of the child were with her night and day, and when she died, her school was closed and half the village attended the funeral.

"There was a feeling of solidarity, of common tragedy shared," Dr. Kübler-Ross said. By contrast, when she was 5, she was "caged" in a hospital with pneumonia, allowed to see her parents only through a glass window, with "no familiar voice, touch, odor, not even a familiar toy." She believed that only her vivid dreams and fantasies enabled her to survive.

By the sixth grade, she wanted to be a physician. But her father, she said, saw only two possibilities in life: "his way and the wrong way." "Elisabeth," he said, "you will work in my office. I need an intelligent secretary."

"No thank you," she said, and her father's face flushed with anger.

"Then you can spend the rest of your life as a maid."

"That's all right with me," she replied.

When she finished school, she worked at various jobs and began her lifelong involvement with humanitarian causes. She volunteered at Zurich's largest hospital to help refugees from Nazi Germany. And when World War II ended, she hitchhiked through nine war-shattered countries, helping to open first-aid posts and working on reconstruction projects, as a cook, mason and roofer.

In Poland, her visit to the Majdanek concentration camp narrowed her professional goal: she would become a psychiatrist to help people cope with death.

Back in Switzerland, she enrolled at the University of Zurich medical school, receiving her degree in 1957. Within a year she had come to the United States; married Dr. Emanuel K. Ross, an American neuropathologist she met at the University of Zurich; begun her internship at Community Hospital in Glen Cove, N.Y., and become a research fellow at Manhattan State Hospital on Ward's Island in New York City.

There she was appalled by what she called routine treatment of dying patients: "They were shunned and abused," she wrote, "sometimes kept in hot tubs with water up to their necks and left for 24 hours at a time."

After badgering her supervisors, she was allowed to develop programs under which the patients were given individual care and counseling.

In 1962, she became a teaching fellow at the University of Colorado School of Medicine in Denver. A small woman, who spoke with a heavy German accent and was shy, despite extraordinary inner self-confidence, she was highly nervous when asked to fill in for a popular professor and master lecturer. She found the medical students rude, paying her scant attention and talking to one another as she spoke.

But the hall became noticeably quieter when she brought out a 16-year-old patient who was dying of leukemia, and asked the students to interview her. Now it was they who seemed nervous. When she prodded them, they would ask the patient about her blood counts, chemotherapy or other clinical matters.

Finally, the teenager exploded in anger, and began posing her own questions: What was it like not to be able to dream about the high-school prom? Or going on a date? Or growing up? "Why," she demanded, "won't people tell you the truth?" When the lecture ended, many students had been moved to tears.

"Now you're acting like human beings, instead of scientists," Dr. Kübler-Ross said.

Her lectures began to draw standing-room-only audiences of medical and theology students, clergymen and social workers — but few doctors.

In 1965, she became an assistant professor in psychiatry at the University of Chicago Medical School, where a group of theology students approached her for help in studying death. She suggested a series of conversations with dying patients, who would be asked their thoughts and feelings; the patients would teach the professionals. At first, staff doctors objected.

Avoiding the subject entirely, particularly when treating the young, physicians and therapists would meet a dying child's questions with comments like, "Take your medicine, and you'll get well," Dr. Kübler-Ross said.

In "On Death and Dying," her account of the seminars on dying that she conducted at Chicago, she asked: What happens to a society when "its young medical student is admired for his research and laboratory work while he is at a loss for words when a patient asks him a simple question?"

She said children instinctively knew that the answers they received about their prognoses were lies and this made them feel punished and alone. Children were often better at coping with imminent death than adults, she said, and told of 9-year-old Jeff, who though weakened with leukemia asked to leave the hospital and go home and ride his bicycle one more time.

The boy's father, tears in his eyes, put the training wheels back on the bike at the boy's request, and his mother was kept by Dr. Kübler-Ross from helping him ride. Jeff came back after a spin around the block in final triumph, the psychiatrist said, and then gave the bicycle to his younger brother.

To bring public pressure for change in hospitals' treatment of the dying, she agreed to a request by Life magazine in 1965 to interview one of her seminar patients, Eva, who felt her doctors had treated her coldly and arrogantly. The Life article prompted one physician, encountering Dr. Kübler-Ross in a hospital corridor, to remark: "Are you looking for your next patient for publicity."

The hospital said it wanted not to be famous for its dying patients but rather for those it saved, and ordered its doctors not to cooperate further. The lecture hall for her next seminar was empty.

"Although humiliated," she said, "I knew they could not stop everything that had been put in motion by the press." The hospital switchboard was overwhelmed with calls in reaction to the Life article; mail piled up and she was invited to speak at other colleges and universities.

Not that this helped Eva much. Dr. Kübler-Ross said she looked in on her years later and found her lying naked on a hospital bed, unable to speak, with an overhead light glaring in her eyes. "She pressed my hand as a way of saying hello, and pointed her other hand up toward the ceiling. I turned the light off and asked a nurse to cover Eva. Unbelievably, the nurse hesitated, and asked, `Why?' " Dr. Kübler-Ross covered the patient herself. Eva died the next day.

"The way she died, cold and alone, was something I could not tolerate," Dr. Kübler-Ross said. Gradually, the medical profession came to accept her new approaches to treating the terminally ill.

From her patient interviews, Dr. Kübler-Ross identified five stages many patients go through in confronting their own deaths. Often denial is the first stage, when the patient is unwilling or unable to face his predicament. As his condition worsens and denial is impossible, the patient displays anger — the "why me?" stage. This is followed by a bargaining period ("Yes, I'm going to die, but if I diet and exercise, can I do it later?"). When the patient sees that bargaining won't work, depression often sets in. The final stage is acceptance, a passive period in which the patient is ready to let go.

Not all dying patients follow the same progression, said Dr. Kübler-Ross, but most experience two or more of these stages. Moreover, she found, people who are experiencing traumatic change in their lives, such as a divorce, often experience similar stages.

Another conclusion she reached was that an untraumatic acceptance of death came easiest for those who could look back and feel they had lived honestly and felt they had not wasted their lives.

In later years, Dr. Kübler-Ross's insistence that she could prove the existence of a serene afterlife drew fire from scientists and many lecture appearances were canceled. The center she built in California in the late 1970's burned, and the police suspected arson. She set up another center in 1984 in Virginia to care for children with AIDS; that center also was burned, in 1994, and arson was again suspected. After the second fire, she moved to Scottsdale, Ariz., to be near her son, Kenneth, a freelance photographer.

That year, when Dr. Ross was dying, he moved to a condominium in Scottsdale near Dr. Kübler-Ross, even though they were divorced. She and their son, Kenneth, cared for him. In addition to the son, Dr. Kübler-Ross is survived by a daughter, Barbara Ross, a clinical psychologist, of Wausau, Wis.; her brother Ernst, of Surrey, England; and her triplet sisters, Erika and Eva of Basel, Switzerland.

As Dr. Kübler-Ross awaited her own death, in a darkened room at her home in Arizona, she acknowledged that she was in pain and ready for her life to end. But she said, "I know beyond a shadow of a doubt that there is no death the way we understood it. The body dies, but not the soul."

Copyright © 2004 The New York Times Company