NY Times

August 26, 2004
Elisabeth Kübler-Ross, Psychiatrist Who Revolutionized Care of Terminally Ill, Dies at 78
By HOLCOMB B. NOBLE

Dr. Elisabeth Kübler-Ross, the psychiatrist whose pioneering work with terminally ill patients helped to revolutionize attitudes toward the care of the dying, died Tuesday at her home in Scottsdale, Ariz. She was 78.

She died after losing consciousness last week, according to her son, Kenneth. She had recently suffered a series of infections. As she neared her own death after debilitating strokes in the late 1990's, Dr. Kübler-Ross appeared to accept it, as she had tried to help so many others to do.

"I always say that death can be one of the greatest experiences ever," she wrote in an autobiography in 1997. "If you live each day of your life right, then you have nothing to fear."

Dr. Kübler-Ross was credited with helping end centuries-old taboos in Western culture against openly discussing and studying death. She also helped change the care of many terminally ill patients to make death less psychologically painful, not only for the dying, but also for their doctors and nurses - and not least for the survivors.

Although the care she sought is by no means universal, she profoundly changed the way the medical profession is asked to look at death. Her greatest influence came through her writings, especially her 1969 best-seller, "On Death and Dying," which remains in print around the world.

She also gave many lectures and distributed tape recordings of them, conducted extensive research into what she described as the five stages of death based on thousands of interviews with patients and health care professionals and did groundbreaking work in counseling dying patients.

She was a powerful intellectual force behind creating a hospice system in the United States through which palliative care and psychological support are provided for many terminally ill people. 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," Dr. Percy Wooten said when he was president of the American Medical Association in 1998.

Dr. Wooten said her work was part of the basis for the A.M.A.'s efforts to encourage the medical profession to improve care 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.

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 of those declared clinically dead by medical authorities but later revived.

Her prestige generated widespread interest and devoted followers.

The work aroused deep skepticism in medical and scientific circles. Her assertions that she had evidence of an afterlife saddened many colleagues, some of whom said she had abandoned rigorous science and had, perhaps, succumbed to her own fears of death.

"For years, I have been stalked by a bad reputation," she wrote 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."

Whatever scientists think about her views 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 routinely left to face death in a miasma of loneliness and fear, because doctors, nurses and families were generally ill equipped to deal with death.

Dr. Kübler-Ross changed that for many, though by no means for all, dying people. By the 1980's, the study of dying became part of medical and health-care education in United States. "Death and Dying" became an indispensable manual, both for professionals and family members.

Weighing barely two pounds at birth, Elisabeth Kübler was the first of triplets born to Ernst and Emma Villiger Kübler on July 8, 1926, in Zurich.

By the sixth grade, she wanted to be a doctor. But her father angrily opposed the plan, telling her she could resign herself to being his secretary in the office supply business that he managed or spend the rest of her life as a maid.

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

After her schooling, she volunteered at the largest hospital in Zurich to help refugees from Nazi Germany. When World War II ended, she hitchhiked through nine war-shattered countries, helping open first-aid posts. In Poland, her visit to the Maidanek death camp narrowed her professional goal. She would become a psychiatrist to help people deal with death.

She received her medical degree from the University of Zurich in 1957. Within a year, she moved to the United States; married Dr. Emanuel K. Ross, an American neuropathologist she had met at the university; began her internship at Community Hospital in Glen Cove, N.Y.; and become a research fellow at Manhattan State Hospital.

At the hospital, she was appalled by what she called the routine neglect and abuse of dying patients. After badgering her supervisors, she was allowed to develop programs under which to give the patients individual care and counseling.

In 1962, she became a teaching fellow at the University of Colorado School of Medicine in Denver. A small, outwardly shy woman who spoke with a heavy German accent, she was nervous when asked to fill in for a popular professor and master lecturer. At first, she was ignored.

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 Dr. Kübler-Ross prodded the students, they asked the patient about blood tests, chemotherapy and other clinical questions. 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 won't people tell you the truth?" she demanded.

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, members of the clergy and social workers - but few doctors.

In 1965, Dr. Kübler-Ross 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 teach the professionals.

At first, staff doctors objected to the program, arguing that patients should be shielded from thoughts of death. 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 wrote in "On Death and Dying," which incorporated her account of the Chicago seminars.

She said that children instinctively knew that the answers they received about their prognoses were lies and that the deceit made them feel punished and alone. With an associate, the Rev. Carl Nighswonger, she interviewed dying patients at Billings Memorial, the university's teaching hospital, while the theology students observed from a one-way glass. The terminally ill were eager to talk.

To bring public pressure to change hospital standards, she agreed to a request by Life magazine in 1965 to interview a seminar patient, Eva, who said that her doctors had treated her arrogantly. The Life article angered the hospital administrators, who said the hospital wanted to be famous not for its dying patients, but rather for those it saved. Doctors were ordered not to cooperate further, and the lecture hall for her next seminar was empty.

But the hospital switchboard was overwhelmed with calls in reaction to the article; mail piled up, and Dr. Kübler-Ross was invited to speak at other colleges and universities.

As for Eva, Dr. Kübler-Ross recounted, she ended up dying cold and alone. Gradually, the medical profession moved toward accepting new approaches to treating the terminally ill, although living wills and patient care directives do not always prevent patients from being subjected to neglect or to invasive medical care at the end of life.

From her patient interviews, Dr. Kübler-Ross identified the five now famous stages that many patients go through in confronting their deaths. Often, denial is the first stage. As his condition worsens and denial is impossible, the patient displays anger, the "Why me?" stage.

That 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 will not work, depression often sets in.

The final stage is acceptance, a period in which the patient is ready to let go.

Not all dying patients follow the same progression, Dr. Kübler-Ross said, but most experience two or more stages. Moreover, she found, people who are experiencing traumatic life changes like divorces often experience similar stages. Another conclusion she reached was that the acceptance of death came most easily for people who could look back and feel that they had not wasted their lives.

Among the patients whom she interviewed in the late 60's was a woman, Mrs. Schwartz, who had been pronounced dead but hours later was found by a nurse to be alive. Dr. Kübler-Ross said Mrs. Schwartz was able to repeat conversations of others that occurred around her when she was clinically dead, including a joke told by a doctor. Doctors and medical students called the episode a hallucination, but Dr. Kübler-Ross thought it merited further investigation, and she began to an effort to verify existence after death.

At a psychiatric workshop, she was quoted as saying: "I know for a fact that there is life after death," and promptly received a barrage of criticism from scientists. The disapproval, plus what she called institutional politics, caused her to leave hospital work in 1973.

By then, she was receiving requests from around the world to give seminars on death and dying, and she began to speak at workshops for the dying about what she called "life after life," a happy condition in which physical pain and mental anguish are absent.

She and associates talked to thousands of patients like Mrs. Schwartz and said they found common strains in the interviews. Patients reported that their experiences after clinical death were remarkably free of pain; that they were aware of precisely where they were at death and of seeming to float out of their bodies; that they seemed not to be suddenly alone but still with family members or friends; that they felt as if they were guided to a place of psychic energy, light, love and warmth greater than any they knew in life; and that they did not want to return.

As Dr. Kübler-Ross became increasingly interested in spiritual phenomena, she sought her own out-of-body experience. Robert Monroe, an engineer from Virginia who wrote "Journeys Out of the Body," invited her - at a time when, as it turned out, she was seriously ill with a bowel obstruction - to participate in experiments with a group of physicians, psychiatrists from the Menninger Foundation and engineers. She lay on a waterbed in a small laboratory, connected with polygraphs and earphones through which she heard tapes of waves, as she was instructed on how to relax.

"I was on the ceiling,'' she recounted. "I was so excited that you couldn't believe it. It was really the highlight of my life."

She repeated the experiment, and she said her illness disappeared.

In her lectures, she began describing more of her out-of-body experiences, some of which she said were at first terrifying but ultimately uplifting. She also talked of encountering spirit guides, including Mrs. Schwartz, who, she said, appeared 10 months after her death and told Dr. Kübler-Ross to continue her work, promising, "We will help you."

In the late 70's, Dr. Kübler-Ross built a center on 42 acres in the hills of Escondido, Calif., where she and others could "expound theories of survival of the spirit after death in the form of a living entity."

When skeptics challenged her accounts of spirit guides, she said people in the modern age had difficulty accepting them, because they "are no longer in touch with their own spirituality."

In 1976, she fell under the sway of Jay Barham, a former Arkansas sharecropper who had founded the Church of the Facet of Divinity and said he was able to channel spirits and communicate with them. Dr. Kübler-Ross talked about setting up a worldwide network of franchised centers with him and his wife to counsel on the problems of dying and living. His program was investigated by the San Diego district attorney's office because of accusations of sexual misbehavior. She severed ties with him, and years later acknowledged that she had been mistaken about him and that he had deceived many people.

Dr. Kübler-Ross's reputation was seriously damaged, and her credibility waned. Moreover, her channeling sessions, combined with a heavy travel schedule, contributed to the breakup of her marriage, and her husband left her in 1979.

Her center in California burned, and the police suspected arson. In 1984, she set up another center, in Virginia, to care for children with AIDS. That center also burned, in 1994, and again arson was suspected. After the second fire, she moved to Scottsdale to be near her son, Kenneth, a freelance photographer.

That year, when Dr. Ross was dying, he moved to a condo in Scottsdale near Dr. Kübler-Ross, and she and Kenneth cared for him. Dr. Kübler-Ross is also survived by a daughter, Barbara Ross Rothweiler, a clinical psychologist, of Wausau, Wis.; and one of her triplet sisters, Eva, of Basel, Switzerland; and two granddaughters.

As Dr. Kübler-Ross's health failed in the late 90's, 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."

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I think she was still in the denial stage. G

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didnt she at one point say decide that her steps of denial acceptance etc were wrong when she was ill? Or is that not true? Ive heard it several times.

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Author changed way many deal with death


http://www.azcentral.com/arizonarepu...s-death26.html
Elisabeth Kubler-Ross

Kathy Shayna Shocket and Connie Cone Sexton
The Arizona Republic
Aug. 26, 2004 12:00 AM


She lived as an international icon, a tireless champion for the terminally ill who changed the way people thought about death and dying.

She died as a frail 78-year-old who welcomed death, content that her mission was complete.

The final chapter in the life of Elisabeth Kubler-Ross began last Thursday in a Scottsdale care center as she sipped juice and ate a piece of her favored Swiss chocolate. To help manage her breakthrough pain, she was given an increased dose of morphine. Swallowing pain pills had become difficult. Later that night, she slipped into unconsciousness, never to wake again.

She died at 8:10 p.m. Tuesday, surrounded by family and friends.

It was the kind of peaceful and dignified death she wished for herself and the world.

It was the final stage, acceptance, that Kubler-Ross outlined in her 1969 book On Death and Dying, which became a pop-culture phenomenon. She theorized that the dying go through five stages of grief: denial, anger, bargaining, depression and acceptance.

Many scholars praised her for recognizing the emotions that the terminally ill endure. But other academics charged that the grief stages were too rigid. Kubler-Ross, however, stressed the stages were never meant to be a formula. Some people may even experience two stages at the same time, she said.

Kubler-Ross, who had been ill for several years after suffering from a series of strokes and infections, died of natural causes.

Feisty, charismatic and empathetic, the Swiss-born psychiatrist took hold of the subject of death in the 1960s and never let go. She rallied for doctors and nurses to treat the dying with dignity, addressing their questions, fears and anxieties but also their pain.

"She got people talking about death and dying and took it out of the closet," said Susan Levine, executive director of Hospice of the Valley in Phoenix.

"It was the last taboo after sex and money, the things you don't talk about in polite company. I'm sorry the world will be without her. Personas like hers don't come along every decade."

On Death and Dying, the first of about 20 books she would write, was grounded in the lives of the 500 terminally ill patients whom Kubler-Ross interviewed. She invited several to speak to medical and divinity students she taught at the University of Chicago.

Although many doctors recoiled at her frankness about death, she became an icon not only to those working in the field of death and dying but also to the terminally ill and their loved ones. She urged doctors not to let their patients die in pain. Millions of her books have been sold and translated into several languages. In 1999, Time magazine named her as one of the "100 Most Important Thinkers" of the past century.

Kubler-Ross was a rebel from a young age, ignoring her father's wishes to become a secretary. She became a country doctor in Switzerland, instead. In 1958, she married an American doctor, and they moved to the United States, where she eventually landed at the University of Chicago and developed a following for her seminars on death and dying.

But the university failed to see the scientific merit of On Death and Dying, and Kubler-Ross was denied tenure. So she hit the lecture circuit to give "Life, Death and Transition" workshops, increasing her public profile. She delved into research and wrote more books.

Near the end of the 1970s, she became interested in mysticism and spirituality. Her quest, in which she got help from "spiritual guides," repelled some of her admirers. She came to wonder if death existed at all or if the dying pass into another world.

She sparked more controversy in 1980 when she bought a farm in Virginia to create a healing center where she planned to care for AIDS babies. The center burned to the ground in 1994. She suspected her work had angered the community.

She moved to Scottsdale in 1995 at the urging of her son, Ken Ross, who lives there.

Although strokes weakened her body, they did not affect her mind and speech, said her son, a travel photographer.

On Sunday, a hospice nurse told Kubler-Ross' family that her heart was weak and that she might die within hours. When her daughter, Barbara Rothweiler, called from Wisconsin to say she would be there the next day, someone put the phone up to Elisabeth's ear, and within an hour, her heartbeat got stronger and steadier.

Kubler-Ross didn't want extreme measures, like a feeding tube, to stay alive.

Before she died, she was asked how she would know when her last breath was near. "She said, "I'll know. Every part of me from my head to my toes will know that its time to go,' " said Brookes Cowan, a hospice volunteer who flew in from Vermont to help manage her friend's pain.

Kubler-Ross added that she was "going to dance across the galaxies."

During her final hour, her son and daughter were at her side. Her grandchildren, who had been sitting across from her bed watching cartoon videos, were taken outside when it appeared death was imminent.

"Elisabeth was all about death and dying in character, and her death epitomized that. The act-of-dying phase lasted about an hour. The room was full of life and chaos," Cowan said. "That's how people used to die, surrounded by children and adults, and it's accepted as a natural part of the life experience."

Condolences have been coming from around the world. The Duchess of York, Sarah Ferguson, called Ross on Wednesday to say she was sorry to hear about his mother's condition and offered her assistance. Ferguson visited with Kubler-Ross after Princess Diana died.

Visitation will be held from noon to 3 p.m. Sept. 4 at Scottsdale Bible Church, 7601 E. Shea Blvd. Her memorial service will follow at 3 p.m., also at the church. Those planning to attend are asked to send an e-mail to elisabethkublerross@yahoo.com. More information is available at www.elisabethkublerross.com .

Kubler-Ross, who moved to Scottsdale in 1995, had been living in an assisted-living complex for the past two years.

Ross said his mother had been in the acceptance stage of facing death for about 10 years.

Others saw her as bitter or angry. Not because she was going to die, but because after all the work she did to help others die with autonomy and independence, she was facing a lingering death and was herself dependent.

Her son recalled that after she suffered a bad fall and infection and nearly died about two years ago, she said she was ready to go. She recovered.

"She told us that she was like a plane that had left the gate and not taken off," Ross said

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