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Elisabeth Kuebler-Ross, 1926-2004

Psychiatrist, Writer Changed the View of Death

By Joe Holley
Washington Post Staff Writer
Thursday, August 26, 2004; Page A01

Elisabeth Kuebler-Ross, 78, a Swiss-born psychiatrist who taught the world how to speak openly about death and dying and whose best-selling book "On Death and Dying" provided a vocabulary for doing so, died Tuesday at her group home in Scottsdale, Ariz.

She had been ill since suffering a series of strokes and infections in 1995.

Elisabeth Kuebler-Ross, who helped revolutionize the treatment of terminally ill patients, speaks to student nurses in Washington. (1973 Washington Post Photo)

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Published in 1969, "On Death and Dying" sold millions and made Kuebler-Ross a household name. The book spoke to a culture that had grown reluctant to discuss death and the experience of dying, and to a medical culture that considered death an affront to medical science.

It gave readers a simple, easy-to-remember formula -- her critics would say too simple -- that universalized the experience of dying. Now part of the vernacular, her five stages of grief were denial, anger, bargaining, depression and acceptance.

"By raising awareness and taking it out of the closet, if you will, she brought the taboo notion of death and dying into the public consciousness," said Stephen Connor, vice president of the National Hospice and Palliative Care Organization.

A small woman who spoke with a pronounced Swiss-German accent, Kuebler-Ross could be charismatic, cantankerous and outspoken.

She insisted that doctors and nurses treat the dying with respect and dignity. Her work gave rise to hospice care, which allows a person to die at home, surrounded by friends and family, instead of in an impersonal, institutional setting.

She also insisted that patients should have a choice about where to die and an opportunity to participate in the decisions doctors were making about their lives.

"It took us three years to start the first hospice in the United States," she said in a 1986 interview. "Boy, it was a forceps delivery! Now they come up like Chicken Delights! I'm not saying that all of them are excellent, but at least every human being in the United States knows now what the hospice is."

Today, there are more than 3,300 hospices in the United States, serving more than 1 million people.

Kuebler-Ross wrote: "Dying is nothing to fear. It can be the most wonderful experience of your life. It all depends on how you have lived."

The firstborn of a set of triplets, Elisabeth Kuebler weighed barely two pounds at her birth on July 26, 1926, in Zurich. The mere fact that she survived was considered miraculous by her family.

As a child, she witnessed the death of a family friend who had fallen from a tree. She said the impression of his final hours, as he bade farewell to the neighborhood children and asked them to look after his family farm, "filled me with great pride and joy."

She later said the death of a girl in her village from meningitis caused mass mourning that left her with "a feeling of solidarity, of common tragedy shared by a whole community."

Her own experiences in hospitals left her horrified. At age 5, she was hospitalized with pneumonia and kept in a glass-walled "cage." She said only her vivid dreams and fantasies kept her alive in such a sterile environment.

As she grew older, she was rebellious and temperamental. She defied her father's wishes that she work as a secretary in his business office.

She left home at 16 and found various jobs, including work as an assistant in an eye clinic. She also volunteered at a Zurich hospital, helping refugees from Nazi Germany.

After World War II, she was a cook, mason and roofer. She hitchhiked across Europe helping establish typhoid and first-aid clinics. Visiting with concentration-camp survivors and refugees, including one memorable stop at Majdanek, a Nazi concentration camp in Poland, persuaded her to pursue medicine.

She returned to Switzerland and graduated from the University of Zurich medical school in 1957.

In medical school, she met a fellow student, Emanuel Ross, a Jewish American neuropathologist whom she later married. The couple moved to New York City in 1958, where Kuebler-Ross became a research fellow at Manhattan State Hospital on Ward's Island in New York City.

She was appalled by the treatment of dying patients; they seemed like untouchables, ignored and isolated. She said patients were kept as far as possible from the nurses' station, and doctors refused them pain medication, fearing they might become addicts.

"Not really knowing any psychiatry," she wrote in her book "Death Is of Vital Importance," "and being very lonely and miserable and unhappy, and not wanting to make my new husband unhappy, I opened up to the patients. I identified with their misery and their loneliness."

In 1962, she and her husband accepted teaching positions at the University of Colorado medical center in Denver, where she began lecturing on care for dying patients.

In 1965, the couple moved to Chicago, where she became an assistant professor of psychiatry at the University of Chicago's medical school.

She and a hospital chaplain began holding Friday seminars at Chicago's Billings Hospital, with Kuebler-Ross interviewing dying patients while hospital staff members, medical students and divinity students listened.

At first, doctors on the staff objected, telling her they didn't have any dying patients. Others accused her of exploiting the terminally ill.

It wasn't long, however, before the seminars were so popular they had to be moved to a large auditorium. By 1968, they had become an accredited course. Now death and dying courses are an integral part of the curriculum at medical schools worldwide and are sometimes even taught at the high school level.

The interviews led her to believe that dying patients go through five psychological phases, beginning with deep denial. After denial comes anger, at God and the world. Next, the patient bargains with God to postpone fate and then falls into depression. Given time and support, she believed that the patient would arrive at acceptance, the final phase.

Today, most experts in the field accept the notion of psychological phases, although they point out that the phases are not as discrete and predictable as Kuebler-Ross's book suggests.

"We've learned a lot about grief since then," Connor said. "What she taught us is that we have to listen to patients at the end of life. There is no right way to die, but in reality, everybody dies differently."

"Of Death and Dying," based on about 500 terminally ill patients she interviewed, was an instant hit.

The University of Chicago, questioning whether her work was valid medical research, denied her tenure. She went into private practice.

She spent most of her time writing and lecturing, giving "Life, Death and Transition" workshops around the world.

Starting in the 1970s, Kuebler-Ross's work with dying patients led her to explore the idea that life after death may be a reality.

She began emphasizing her belief in reincarnation and a spirit world. She interviewed patients who had returned from near-death experiences. They told of being in contact with long-dead relatives who spoke of seeing a light at the end of a tunnel.

As with her famous stages of dying, she theorized that humans experience four stages of actual death: floating out of the body; being converted to a form of spirit and energy; being guided by a guardian angel through a transitional phase; and finally a meeting with the Highest Source, or God.

"I don't only believe that there's life after death, but I know," she said in a 1975 interview. "We have enough absolute verifiable knowledge, and once you know this, then you could share this with people."

Her descriptions of out-of-body experiences and her involvement with a Southern California hospice and retreat called Shanti-Nilaya ("home of peace" in Sanskrit) dismayed many who valued her pioneering work on death and dying.

Her focus on the afterlife was so disturbing to her husband that in 1976 he divorced her and raised their two children on his own.

She said that a California friend had introduced her to two guides to the spirit world; she called them her spooks. Although the friend was later shown to be a fraud, she said she still communicated with her two spirits. Shanti-Nilaya was nearly destroyed in a fire in 1983, and police suspected arson.

That same year, she established the Kuebler-Ross Center, on a 300-acre farm in the Shenandoah Valley, near Head Waters, Va. She also began working with AIDS patients, particularly infected babies.

In 1985, when she attempted to establish a home for children with AIDS on the wooded estate, Highland County residents protested. Two thousand people, almost every adult in the county, signed a petition to keep the center away.

In 1994, that center also burned; again, police suspected arson. Along with the estate went notes, journals and photos Kuebler-Ross had compiled over the decades.

She moved to Scottsdale to be near her son, Kenneth Ross, a photographer. Her former husband also moved to a condominium near Scottsdale, and she and her son cared for him before he died in 1992.

Despite a sixth stroke that left her partially paralyzed and near death in 1995, she continued work on books.

She moved into a hospice after a fall in 2002. Her son told the Arizona Republic that when his mother didn't die as expected after the strokes, she told family members she was like a plane that had left the gate but hadn't taken off. He felt she was in the fifth and final stage of the dying experience: acceptance.

She was able to die peacefully, surrounded by friends and family. According to the Arizona paper, she was in a room with lots of flowers and a big window that looked out on the desert.

Survivors include her son and a daughter, Barbara Ross, a clinical psychologist, of Wausau, Wis.; a sister; and two granddaughters.

© 2004 The Washington Post Company