Psychiatrist Changed How We Look at Death

Dr. Elisabeth Kubler-Ross, the Swiss-born psychiatrist whose groundbreaking study of the end stages of life humanized the treatment of the terminally ill and helped to inspire the hospice movement in this country, died of natural causes Tuesday in Scottsdale, Ariz. She was 78.

Kubler-Ross had been in declining health since 1995, when she suffered a series of debilitating strokes. Surrounded by family and friends, she died at an assisted-living center, where she had lived for the last few years, her son, Kenneth, told The Times on Wednesday.

She had wanted to die after the strokes left her partially paralyzed and unable to live independently. At the time, she expressed bitterness that she was still alive and made headlines around the country about how the guru of the “good death” could not achieve one for herself.

But in the end, she “died with acceptance on her face,” said David Kessler, a hospice expert and close friend who was among those present at her death.

Kubler-Ross was the author of “On Death and Dying,” a 1969 bestseller that illuminated the emotional life of dying patients by identifying five stages of the experience: denial, anger, bargaining, depression and acceptance. The book, which has been translated into more than 25 languages and is still a widely used text, spurred a revolutionary movement within the medical community to lift the taboo on discussions about the dying and infuse their treatment with dignity and affection.

“Prior to Elisabeth’s work, patients who were dying were objectified, seen as a collection of manifestations of disease,” said Dr. Ira R. Byock, a longtime hospice physician and past president of the American Academy of Hospice and Palliative Medicine. “She forced the medical profession and healthcare in general to listen to the person who was confronting the end of life. This was a radical notion

Kubler-Ross began her work when American medicine was heady over its successes at prolonging life with new antibiotics, heart and kidney transplants and other advances in surgery, intensive care and cardiology. To talk of death, from the vantage point of physicians in the 1960s, was to acknowledge defeat.

Thus, as astonishing as it might seem today, when Kubler-Ross began to look for patients who could teach her students about the end of life, colleagues told her they could not help her because none of their patients were dying.

“They told her nobody comes here to die; they come here to be treated,” said Dr. Joanne Lynn, a senior scientist with Rand Health, a nonprofit research enterprise based in Santa Monica.

Lynn, who also directs the Washington Home Center for Palliative Care Studies in the nation’s capital, added: “Her biggest legacy is just to have us notice that there really is a piece of time when it is reasonable to take notice of the fact that time is likely to be very short and to treat that phase of our life somewhat differently.... She gave us the tools -- and, most of all, the courage -- to notice the obvious.”

In later years, Kubler-Ross directed her attention to people with AIDS, particularly infected babies, trying to improve their care at a time when the disease was still widely misunderstood.

She also took a direction that startled many in the medical community: exploring “out of body” experiences and other phenomena reported by people who had come close to dying. She began to speak of contacts she said she had with spirits. Death, she seemed to be suggesting, was just another phase to be surmounted.

Such reports caused some of her colleagues in the medical profession to doubt her sanity. But the “death and dying lady,” as Kubler-Ross came to be known, did not attempt to foist her unconventional views on others, arguing that skeptics would one day finally experience the truth for themselves.

Death impinged early on Kubler-Ross’ world. She was born in Zurich on July 8, 1926, the smallest of a set of triplets (“a 2-pound nothing,” she called herself later) who was not expected to live. But, proving herself a rebel from birth, she survived.

She had a difficult childhood under the thumb of a domineering father. One of her earliest memories was of his forcing her to take her pet rabbit to the butcher, then watching her family “eat my bunny” for dinner. That incident taught her to be tough -- “tougher than anyone” -- she recalled in her 1997 memoir “The Wheel of Life.”

She was interested in medicine from an early age and, despite her father’s initial opposition, eventually embarked on a career in the field. She was working in a Zurich laboratory at the end of World War II, when the opportunity arose to volunteer as a relief worker and visit Maidenek, a Nazi concentration camp in Poland.

Her tour of the death camp left a profound impression. Etched on the walls of the barracks were hundreds of images of butterflies, symbols of rebirth lighting the dank interiors of otherwise hellish scenes.

In 1957, she earned her medical degree at the University of Zurich, where she met Emanuel Ross, an American doctor. They married and moved in 1958 to New York, where she completed her psychiatric residency. After becoming a U.S. citizen in 1961, she accepted a teaching position at the University of Colorado medical school, as did Ross.

Her work with the dying began there, when she was asked to take over a class for a respected professor. Desperate for a topic that she hoped would keep her students from falling asleep, Kubler-Ross chose “the greatest mystery in medicine,” death.

To her surprise, she discovered a dearth of material on the subject and wondered how she would fill a two-hour lecture. On rounds one day at the hospital affiliated with the medical school, she found her answer in a 16-year-old girl dying of leukemia who had freely and eloquently expressed her anger at her family’s inability to cope with her impending demise.

Kubler-Ross was fascinated by the girl and knew that her students would be too.

“Tell them all the things you could never tell your mother,” she said when she asked the girl to address her class. “Tell them what it’s like to be 16 and to be dying. If you are furious, get it out. Use any kind of language you want. Just talk from the heart and soul.”

The girl poured out her feelings and left her audience in tears.

A few years later, Kubler-Ross had another opportunity to teach movingly about death. In 1965, she and her husband had moved to Chicago, where she joined the psychiatry department of a hospital associated with the University of Chicago. One day, she was approached by four seminary students who had heard about her Denver lecture and asked for her help finding a dying patient they could interview.

Kubler-Ross found a patient for them to talk to only after enduring many refusals from fellow physicians. Some doctors reacted with disgust when she asked if she could speak to a dying patient. Some accused her of exploitation. But most would not even admit they had dying patients.

When she was a young country doctor in Switzerland, Kubler-Ross had treated dying patients in their homes, where they could be attended by family and friends. In America, she was distressed to observe that dying was often a lonely and impersonal event. The dying were shut off in rooms as far away as possible from the nurses’ station and were denied visitors except during prescribed hours. They endured harsh hospital lighting and insensitivity to physical pain, basic aspects of their care that they were powerless to influence. “They were left alone to die,” she wrote, “as if death might be contagious.”

She persevered in her work with the dying, and her success at getting them to share their innermost thoughts intrigued others, so much so that by 1967 Kubler-Ross was leading a seminar in Chicago every Friday that featured a conversation with a dying patient.

Gradually, she discerned five psychological phases in the dying process.

Denial generally came first, a temporary defense against the shock of the grievous news. Then came anger, the impulse to rage against God and ask, “Why me?” Next was bargaining, the effort to plead with a higher power to postpone fate (“Please let me live long enough to see my son graduate from high school”). Grim realizations (“There is so much I’ll never get to do”) fueled the fourth stage, depression. Acceptance was the final phase, marked by a desire for detachment, rest and peace.

By delineating these five stages, Kubler-Ross hoped to help not only the dying person but the medical professional. She believed that doctors who were in “professional denial” could not help their sickest patients come to terms with their illness and imminent death.

Kubler-Ross recalled one woman at a seminar whose doctor only wanted to discuss the size of her liver.

“At this point,” the dying woman cried out, “what do I care about the size of my liver? I have five children at home who need to be taken care of. That’s what’s killing me. And no one will talk to me about that!”

Kubler-Ross’ seminars became standing-room-only affairs, held in a large auditorium and attended by medical and theology students, nurses, priests, rabbis and social workers. It was often hard for her to get the patients to stop talking, so relieved were they to find an outlet for bottled-up feelings.

In 1969, Life magazine published an article on her sessions with the dying that made her famous overnight. Then, her seminal “On Death and Dying,” written in only two months, was released. Soon, the tiny woman with the Swiss-German accent and wispy salt-and-pepper hair was in demand across the country, giving lectures and workshops on a subject that, just a short time before, had drawn silence from those who faced it daily in their professional lives.

Although she did not found the hospice movement, her work spurred the development of such facilities, providing what longtime hospice physician Byock called “a theoretical foundation for end-of-life care.” There are now more than 3,100 hospice programs in the United States.

During the years she spent helping the terminally ill, Kubler-Ross observed much behavior she could not understand. She heard dying patients talk with people she could not see -- often loved ones who had preceded them in death. In virtually every case, the dying patient seemed to have a moment of what Kubler-Ross termed “a peculiar serenity” before taking a final breath.

Other strange experiences were reported by patients who returned from the brink of death. One particularly memorable patient, a Mrs. Schwartz, described floating out of her body in a hospital room and watching as a medical team frantically tried to revive her but finally pronounced her dead.

Kubler-Ross was so taken by the woman’s story that she and a colleague decided to search for similar cases. Comparing notes after each had interviewed 20 people who had died and been resuscitated, they found eerie similarities, including conversations with dead relatives, out-of-body experiences and the sensation of emerging from a dark tunnel into light.

Instead of dismissing such reports as hallucinations, Kubler-Ross embraced a controversial view: that death -- the event she had labored so diligently to ease for the dying and their families -- “does not exist.” There was, she proclaimed, such a thing as an afterlife.

In 1977, she founded a hospice and retreat called Shanti-Nilaya at Lake Wohlford, north of San Diego, where she reported experiences with beings she called her “spooks” and “guides.” In her autobiography, she said it was her fascination with channeling and spirits, and her closeness with spiritual channeler Jay Barham in that period, that led to the end of her marriage.

Kubler-Ross left the San Diego area in 1984 and established a center in Virginia’s Shenandoah Valley, where she remained for several years. After suffering the strokes in 1995, she moved to Scottsdale to be near her son. He survives her, as does her daughter, Barbara Rothweiler of Wausau, Wis.; two grandchildren; and a sister, Eva Bacher of Basel, Switzerland.

In addition to being a teacher and lecturer, Kubler-Ross continued to write books throughout her life. They include “Questions and Answers on Death and Dying” (1972), “Death: The Final Stage” (1974), “To Live Until We Say Goodbye” (1978), “Working It Through” (1981), “On Children and Death” (1985), “AIDS: The Ultimate Challenge” (1988), “On Life After Death” (1991) and “Death Is of Vital Importance: On Life, Death and Life After Death” (1994). Her last book, co-written with Kessler, is “On Grief and Grieving” and will be published in 2005.

The strokes left her angry and bitter for some time. Dependent on a wheelchair and housebound in Scottsdale, she said she was deeply disappointed by the way doctors and nurses responded to her pain and debilities. She faced death with impatience.

“I am like a plane that has left the gate and not taken off,” she said. “I would rather go back to the gate or fly away.”

Kessler asked her at the time why she hadn’t “flown” away yet. She told him she still had lessons to learn. One was about patience. The other involved learning to receive love after nurturing others for so many years.

In her last days, she accepted the affection of friends from around the world who flew in to share a few fleeting hours with her.

She clung to her belief in life after death. In fact, she told an interviewer a few years ago that she was making plans for her own afterlife: She would meet her idols -- Gandhi and psychiatrist Carl Jung were at the top of her list -- and slip the bindings of illness.

“I’m going to dance,” she said, “in all the galaxies.”