Psychiatrist whose 'On Death and Dying' revolutionised the way doctors treat terminally ill patients
Saturday 28 August 2004
Elisabeth KÃ¼bler-Ross revolutionised the way that doctors and hospitals in the Western world deal with dying patients. Before her 1969 classic book
On Death and Dying, medical staff often did not tell patients with terminal diseases the truth about their conditions. Patients would find themselves isolated, unable to share their fears and concerns with their carers. Kübler-Ross's work changed all that.
Elisabeth Kübler, psychiatrist and writer: born Zurich 8 July 1926; Fellow, then Instructor, in Psychiatry, University of Colorado School of Medicine 1962-65; Assistant Professor of Psychiatry, University of Chicago Medical School 1965-70; Medical Director, Family Service and Mental Health Center, Chicago Heights 1970-73; married 1958 Manny Ross (one son, one daughter; marriage dissolved); died Scottsdale, Arizona 24 August 2004.
Elisabeth KÃ¼bler-Ross revolutionised the way that doctors and hospitals in the Western world deal with dying patients. Before her 1969 classic book On Death and Dying, medical staff often did not tell patients with terminal diseases the truth about their conditions. Patients would find themselves isolated, unable to share their fears and concerns with their carers. Kübler-Ross's work changed all that.
Her career of dealing with the dying can be said to have begun in 1965 when she was a young medical doctor. Four theology students at the Chicago Theological Seminary approached her to help with a research project on death as a crisis in human life. They decided that the best way to study the issue was to ask terminally ill patients to be their teachers. They observed critically ill patients, studied their responses and needs, and evaluated the reactions of the people around them.
Kübler-Ross began one section of her book with the statement, "To tell or not to tell, that is the question," but went on to say, "The question should not be 'Should we tell . . .?' but rather 'How do I share this with my patient?' " She thought that the most important issue is the medical person's own psychological outlook. The physician should first examine his or her own attitude toward malignancy and death to be able to talk about such grave matters without undue anxiety.
Her theory was that terminally ill patients need to communicate, that they are willing to share their thoughts and feelings if their carers are unafraid. Her goal was for people to live fully until they died, and "not just lie there and vegetate". She saw death, even the death of a child, as a tragedy only in how the person died, not that the person died.
She criticised medical training for teaching "everything about your liver and nothing about you as a person". She believed medicine should move in the direction of "healing and spirituality," the way it was "before doctors became exclusively scientists".
In a 1981 interview with Playboy, she said that people believed that
if you would get enough money and brain power together, you could conquer cancer absolutely and then death itself - as if there is no limit to human capability . . . What people can't understand is that it would be the greatest tragedy to do away with cancer . . . People would live up to 100, 130, and almost all of them would have strokes. Every house would be full of paralysed, incontinent old people unable to speak.
One of her best-known teachings is an outline of the "stages" a person goes through after learning that they have a fatal disease. The first is denial. This is usually a temporary defence and is soon replaced by partial acceptance, though some denial continues. Next is anger. Along with the anger goes envy and resentment toward other people who are healthy. The anger can be at God.
The third stage is bargaining. This is an attempt to postpone the inevitable, to postpone death or to have some time without pain or physical discomfort. It involves a reward or prize that the patient hopes for in exchange for "good behaviour". The patient implicitly promises not to ask for more if this one wish is granted.
The fourth stage is depression.
When the terminally ill patient can no longer deny his illness, when he is forced to undergo more surgery or hospitalisation, when he begins to have more symptoms or becomes weaker and thinner, he cannot smile it off anymore.
This is aggravated, among other things, by financial burdens, job loss, an inability to function, and shame about a changed appearance. Kübler-Ross distinguished between two kinds of depression in the dying: "reactive" depression to past loss and "preparatory" grief, readying oneself for "final separation from the world". She believed that this second type of depression is necessary and helpful for the patient to enter the fifth and final stage: acceptance.
This is the stage of "positive submission", of accepting with a sense of peace and serenity what cannot be changed.
It is as if the pain had gone, the struggle is over . . . This is also the time during which the family needs usually more help, understanding, and support than the patient himself. While the dying patient has found some peace and acceptance, his circle of interest diminishes. He wishes to be left alone or at least not stirred up by news and problems of the outside world. We may just let him know that it is all right to say nothing when the important things are taken care of and it is only a question of time before he can close his eyes forever.
She was later to say that people go through the same stages when faced with any kind of loss: losing a spouse, a job, a maid, a parakeet - even, in some cases, a contact lens. But she saw dying as the last big growth experience a person has; one of her books was entitled Death: the final stage of growth (1976).
Kübler-Ross went on to work with people who had near-death experiences: generally victims of accidents or heart attacks, whose vital signs stop, and who then are resuscitated or recover spontaneously. In the Playboy interview she said that in a near-death experience the body becomes perfect again:
quadriplegics are no longer paralysed, multiple-sclerosis patients who have been in wheelchairs for years say that when they were out of their bodies, they were able to sing and dance . . . and totally blind people can report exactly what the scene looked like at the accident or hospital room. They have described to me incredibly minute details.
Around this time, she alleged that she was convinced of the reality of life after death. From then on, she and her work became increasingly controversial.
She maintained a belief in "spirit guides". She said that the "guardian angels" discussed in the Bible and the imaginary playmates that children talk to and about are "nothing but spirit guides - people who have once lived in our physical world and then have died. Then they decide to help a person during his physical existence." She said her own guides had taught her that she "had an illusion" that death and dying was her work, that her death-and-dying work was only a test to see if she could "take negativity and hostility".
She told Playboy: "I'm still an uptight, logical, square Swiss doctor, a hillbilly, and until a few years ago, I didn't believe in ghosts. But I've had some experiences, personally, that have just blown my mind."
In 1977 she joined in creating a "healing centre", in the mountains of Escondido, California, near San Diego. (Later, in the early 1980s, she transferred to a 300-acre farm in Head Waters, Virginia). Here she would have group sessions. She reported specific messages from her spirit guides and experiences with them. "Salem", a male guide, "materialised" and told her and others in a group that they "were chosen because they had worked together in Jerusalem 2000 years ago with Christ". To materialise a guide, she said it takes "an enormous amount of positive energy, more energy than to shoot a rocket to the moon. Then there are people who act as channels. It takes channel energy."
In the autumn of 1979 a scandal involving Kübler-Ross got national attention in the US media. Living at her centre near San Diego, she became closely connected with the "healers and spiritualists" Jay and Marti Barham. A group of followers used to gather at the Barhams' ranch to materialise spirit guides into human form. Jay Barham was the "channel" or "medium".
Kübler-Ross alleged that guides took "actual molecules" out of Barham to clone a human being, in which form they appeared. "The bulk energy to create the guide who comes to visit comes from us, the group. And the more people there are in the group, the faster the materialisation happens. It is a true cloning," she said. One spirit guide, "Mario," appeared from the waist up and gave her a back rub for 15 minutes.
Many group members defected. They alleged that there were no real spirits present, only Barham masquerading as an "entity"; that Barham in disguise had lured female members into sexual activities with him; and that he had enlisted other women members to pretend to be guides and seduce the male participants. The San Diego district attorney's office came to investigate the story of a 10-year-old child sexually abused by a "spirit entity" who was suspected to be Barham disguised. Kübler-Ross was seen not as fraudulent, but as a dupe of the Barhams. Needless to say, the incident undermined her reputation.
She was born Elisabeth Kübler in Switzerland in 1926, an identical triplet, weighing two pounds, and given a slim chance of survival. The other triplets, Erika and Eva, survived too. Their parents, Elisabeth wrote, "were a typical upper-middle-class, conservative couple" in Zurich. Her father was the assistant director of an office supply company.
By the time she finished her schooling in 1942, she had decided she wanted to be a doctor. However, her father had other ideas. He decided that Elisabeth would become the secretary and bookkeeper for his business. She made it clear she "would never accept a prison sentence like that". Instead Elisabeth Kübler went to work as a maid in Romilly, a Swiss village. She disliked the job, escaped a few months later, and went to work as an apprentice in a biochemical research institute.
Her next job was as an assistant in a Zurich dermatology department. As a result of the Allied troops invading Europe, waves of war refugees streamed into Switzerland and many, including children, came to her department. Her boss there told her about the need for medical care in Poland, and she felt "inspired" with a resolve to go there and "help rebuild Poland" once the war ended.
Meanwhile, Kübler chanced to meet some members of the International Voluntary Service for Peace (IVSP) and chose to join them. Her father thought she was "nuts", but she saw her destiny as being "somewhere in the desert of human suffering".
She worked for another year as an apprentice in an ophthalmology department at the University of Zurich and, aged 21, went to Poland with the IVSP. She wrote that she did not know if what she did there was "practise medicine or pray for miracles".
She returned after eight months to the same Zurich ophthalmology department, still determined to study medicine. There she met her future husband, a fellow medical student from America called Manny Ross. She passed her final exams in 1957 and married Manny in 1958.
At first she worked as a "country doctor" in Switzerland. She wrote in her 1997 autobiography, The Wheel of Life,
A few months in the country convinced me that being a good doctor had nothing to do with anatomy, surgery or prescribing the right medication. The biggest help a doctor could give a patient was to be a good, caring, sensitive, loving human being.
She and her husband went to America, where they worked as interns for a year at Glen Cove Community Hospital in Long Island, New York. From there she went to a residency training in paediatrics at Columbia Presbyterian Hospital in New York City. She became pregnant, so she left her job to work in a psychiatric ward at Manhattan State Hospital. In the event, she miscarried. She knew nothing about psychiatry, but she "knew about life" and opened herself up "to the misery, loneliness and fear these patients felt".
She had a first child in 1960, and the following year became a US citizen. After two years at Manhattan State Hospital, she moved for her last year of psychiatry training to Montefiore Hospital, in the Bronx, New York.
She and Manny then found positions at the University of Colorado, he in neuropathology, she in psychiatry. When her boss announced that he was leaving the department and asked her to take over his psychiatry lectures to the medical students, she chose death as her topic.
She was accepted for training as a psychoanalyst at Chicago's Psychoanalytic Institute, but again a pregnancy changed her career. She gave birth to her second child, Barbara, in 1963. She did undergo 39 months of a classical psychoanalysis training in Chicago, without becoming a psychoanalyst.
For years she valued what she called a good death - "at home, surrounded by love and given respect, dignity and affection". While she did not believe in mercy killing, because "it is a very grave crime to take another person's life or your own life", she did believe in euthanasia, literally, since the word means "good death".
She once said that if she could choose between cancer and a sudden death or a stroke, she would "definitely choose cancer". By the time she wrote her 1997 autobiography she had already had six strokes over the previous few years. She finally died peacefully.
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