The angel of death and dying

Grief, said Elisabeth Kubler-Ross, has five stages. Denial is followed by anger, then bargaining, depression and, finally, acceptance. Even when we are thrashing around in fury or drowning in depression, there is hope because acceptance is somewhere down the road.

The Globe and Mail
August 26, 2004

The angel of death and dying
Psychiatrist's watershed book overturned societal taboos, changed how doctors regarded death and taught families that it wasn't scary to watch someone die. Later, she delved deeply into the afterlife
Associated Press

PHOENIX — Grief, said Elisabeth Kubler-Ross, has five stages. Denial is followed by anger, then bargaining, depression and, finally, acceptance. Even when we are thrashing around in fury or drowning in depression, there is hope because acceptance is somewhere down the road. This is how it works, said the Swiss-born psychiatrist who herself died in Scottsdale, Ariz., on Tuesday.

Dr. Kubler-Ross, who revolutionized the way the world looks at terminally ill patients and then later became a pioneer for hospice care, was 78.

Published in 1969, her book On Death and Dying focused on the needs of the dying and introduced to the world her five-stage theory.

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

Impose a framework on grief — give it a script with a beginning, a middle and an end — and that will help make sense of it, she said. By making sense of it, we control it.

"Those who learned to know death, rather than to fear and fight it, become our teachers about life," she wrote.

Dr. Kubler-Ross wrote 12 books after On Death and Dying, including how to deal with the death of a child and an early study on the AIDS epidemic.

"She brought the taboo notion of death and dying into the public consciousness," said Stephen Connor, vice-president of the U.S. National Hospice and Palliative Care Organization.

Born in Zurich, Switzerland, in July 8, 1926, Dr. Kubler-Ross graduated from medical school at the University of Zurich in 1957 and immigrated to the United States the next year where she was appalled by how hospitals handled death.

"Whoever has seen the horrifying appearance of the postwar European concentration camps would be similarly preoccupied," she said.

In 1997, she published a revealing memoir that set out in chronological order her birth as one of a set of triplet girls, her postwar volunteer work in refugee camps, her mother's agonizing death, followed by medical school and marriage to a fellow student, and then by her early work in New York.

The book was also her first explanation of her interest in near-death experiences and her subsequent belief that "death does not exist," being merely a portal to a next stage. Her descriptions of out-of-body experiences, "chanelling" and visits from long-dead spirit guides may have been heavy-going for some readers; it certainly was for her husband, who left her during what she said was the "second stage" of her career.

Despite all her genuine good works, Dr. Kubler-Ross did not emerge in her memoir as a very likable character; her own words revealed an arrogant, self-absorbed individual who was the centre of her own universe.

"I had a detective's flair for making the correct diagnosis quickly," she wrote in one of hundreds of self-congratulatory comments.

She did, however, manage to learn from the experiences of others. Among her memoirs was a story about a black cleaning woman in a Chicago hospital. She described watching the woman go into the rooms of terminally ill patients to hold their hands and listen to them talk when no one else would.

"She was my greatest teacher," said Dr. Kubler-Ross.

Characteristically, she promoted her to be "first assistant" but "I don't remember her name."

It was Dr. Kubler-Ross's belief that people die when they learn the lessons they've been sent to Earth to learn (one of the reasons she adamantly rejected physician-assisted suicide or euthanasia). She believed her mother's drawn-out death was God's plan so that she could learn to accept the love and care of others.

After a period spent on the staff of hospitals in New York and Chicago, she began her first important work with the terminally ill at the University of Colorado Medical Center in Denver. Later she became clinical professor of behavioural medicine and psychiatry at the University of Virginia in Charlottesville.

Dr. Kubler-Ross began giving lectures at which terminally ill patients detailed their experiences.

"Dying becomes lonely and impersonal because the patient is often taken out of his familiar environment and rushed to an emergency room," she wrote.

"He may cry for rest, peace and dignity, but he will get infusions, transfusions, a heart machine, or tracheostomy … He will get a dozen people around the clock, all busily preoccupied with his heart rate, pulse, electrocardiogram or pulmonary functions, his secretions or excretions — but not with him as a human being."

Dr. Kubler-Ross was untroubled that her opinions, which changed over time, upset convention.

"Whether or not my discoveries are acceptable or whether society adores me or hates me or labels me psychotic is irrelevant," she once told a Winnipeg seminar.

She also laughed at some of her own conclusions in On Death and Dying. "I wrote then that the ultimate denial of death was the belief in a life after death. That's where I was still coming from in 1969."

Later she developed an intense interest in the after-life. She said her studies of those brought back from clinical death — generally accident and heart-attack victims who returned to the living with tales of ecstatic visions — challenged her conventional scientific views.

"I stumbled into this work … when I was researching a definition of the moment of death that would encompass both the physical and spiritual aspects of life.

"It made my rational analysis of the stages of death incorrect. Death is only a transformation from a physical field of energy into a psychic field of energy."

Beyond death, "you are surrounded by love, joy and exultation. You find non-judgmental love and then, free of guilt and other external considerations, you review your life and actions from birth to death. Dying becomes merely severing the connection between the cocoon and butterfly."

In death we are never alone, she said.

"No human being dies alone. Only when you're out of your body can you be anywhere in this galaxy where your thoughts take you at the speed of your thoughts. So, it's totally impossible to die alone."

Her studies of Polynesian, Australian and North American aboriginal beliefs led her to Jay Barham, a former aircraft manufacturer who established a spiritualist afterlife cult at a retreat in southern California. Through Barham and his wife Martha, she came to believe in spirit guides — persons who have died and take care of living people.

In 1979, her credibility suffered as the result of her relationship with the Barhams. The cult was investigated for sex offences. Former female members said they had been instructed to enter a darkened room where they were joined by a naked man who talked convincingly of being an "afterlife entity." The "entity," they asserted, then invited them to have sex with him, and most did. Many later identified Barham as "the entity."

In the 1980s, she encountered community resistance to a home for children with AIDS that she established in rural Virginia. The project was abandoned after she was run out of town and her home and all her possessions were lost in a fire.

For all the controversy in her life, Dr. Kubler-Ross's contribution to modern medicine is regarded as immense (in 1999, Time magazine named her as one of the 100 most important thinkers of the 20th century).

The most significant thing she did was bring death out of the dark for the medical community, said Carol Baldwin, a research associate professor of medicine at the University of Arizona who in 1979 worked as a nurse at one of the first hospices in the United States

"She really set the standards for how to communicate with the dying and their loved ones," Dr. Baldwin said. "Families learned that it's not a scary thing to watch someone die."

Dr. Kubler-Ross, who died of natural causes at her Scottsdale home, leaves her children Kenneth Ross and Barbara Lee Ross.

Last year, her son said his mother, in her final months, was reaping the benefits of the movement she helped start, finding comfort in the constant companionship and dependable care of a group home.

"We get letters and e-mails from around the world," he said. "There's people who say, 'I was going to kill myself' because they've lost children or their husband or wife, and they read her book and it gave them a sense that they should go on."

At the end of her last book, Dr. Kubler-Ross detailed her own decline. She described it as a prolonged death after suffering a series of strokes which left her paralyzed, dependent and in constant pain.

"I am very anxious to graduate" to the next world, she said.

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