Elisabeth Kübler-Ross
Authors: Laura Newman
Journal: BMJ (2004)

In her groundbreaking bestseller On Death and Dying, Elisabeth Kubler-Ross overturned how physicians treat dying patients. When the book was published in 1969, death was a taboo subject and discussing it was considered morbid. Patients died alone in hospitals; physicians ignored them; and adequate pain medication was underused. The book brought these practices to the fore—and pressed for more humane treatment of the dying.

The book rocked the medical profession—and at the same time also resulted in a public outcry for compassionate care of the dying. On Death and Dying is a classic work and is still in print around the world today.

Kubler-Ross's work stemmed from the realisation that in her native Switzerland, death, like birth, was considered a normal part of the life cycle. In Switzerland people died at home surrounded by family and friends—and they were comfortable until the end of their lives. In contrast in the United States and other countries that placed a premium on high tech medicine, patients lay by the wayside. It was a practice she deplored.

A hallmark of Kubler-Ross's work was her emphasis on communication. She stressed that patients truly wanted to review their lives, their deterioration, and imminent death. When patients and doctors could talk openly—and without fear—a good death could be achieved.

In 1967 Kubler-Ross began interviewing dying patients at the University of Chicago's Billings Hospital, where she was a psychiatrist. She hoped to learn what patients were thinking as they lay dying.

From her first hand research, she derived the famous five stage framework: denial, anger, bargaining, depression, and acceptance—or, as she called it, “one common denominator” of death and dying. The model outlined how patients with terminal illness grappled with their diagnosis, and their emotions along the way, right through to acceptance of their impending death. She appealed to the medical community to use it.

Collin Murray Parkes, consultant psychiatrist at St Christopher's Hospice in London, credits Kubler-Ross's five stage framework and its high visibility as a driving force in stimulating research and changing practice in the death and dying field. However, he said that the model had not proved durable. “Like all pioneers, we learn that the new concept is not as simple as initially described,” Dr Murray Parkes told the BMJ. “It's no longer considered a linear progression, a one size fits all approach. There's so much more we know today.”




Figure 1



Credit: AP PHOTOS




Kubler-Ross's excellent communication skills with patients extended to lectures and workshops held around the world. Balfour Mount, chair of palliative care at McGill University in Montreal, remembers how she addressed more than 5000 surgeons at an American College of Surgeons meeting, one of hundreds appearances she made around the world. “It was as if they were transfixed by her,” he said.

Mount called her “one of the most effective communicators of the 20th century. She was a very skilled listener and a role model for patient interviewing and active listening, and she established an entirely new field of practice—'narrative medicine.”

Yet Kubler-Ross also had a reputation for being single minded and difficult, according to many colleagues. “She had plenty of devotees, but she found it difficult to relate on an equal basis to her own peers,” commented Dr Murray Parkes. “She always had to be her own centre.”

On Death and Dying and the five stages are not her only legacy. Kubler-Ross was also a prolific author of more than 20 books. Her interests also became more specialised, addressing, for example, the care of dying children (On Children and Death) and HIV infected people, including prisoners with AIDS (AIDS: The Ultimate Challenge).

In an interview with ABC News in the United States on 18 December 2001 she said that she was most proud of her work with people with AIDS and creating hospice care for prisoners with AIDS. Her last project, building a hospice for children with AIDS in Virginia, ended with a suspicious fire. It also destroyed many unpublished papers. Soon after, she moved to Scottsdale, Arizona, to be close to her son.

Kubler-Ross was one of identical triplets. She was determined to make an immense impact on the world. Her father was less than supportive, insisting that she become his secretary. She told ABC News that she had dreamed of becoming the next Albert Schweitzer, the medical missionary and Nobel prize winner.

She graduated from medical school at the University of Zurich and married a classmate, Emanuel Ross. They moved to the United States in 1958 and had two children. They later divorced. In 1963 Kubler-Ross was awarded her medical degree from the University of Colorado in Denver. By then, she had strong academic interest in death- and-dying concerns. During her lifetime, she was awarded more than 25 honorary doctorates. Despite her many accomplishments, she drew a lot of criticism when she embraced metaphysics, near death and out of body experiences, and an afterlife.

In 1995 she had her first stroke. After several strokes left her increasingly debilitated, Kubler-Ross said that she was preparing for her own death. Reporters sought her out for interviews and several documentaries were filmed. At times, she said that she had skipped the first four stages—was at the acceptance stage and ready to die. At other times, close friends were not so sure: they sensed resignation and depression.

Elisabeth Kubler-Ross, former psychiatrist Chicago and Arizona (b Zurich 1926, q University of Colorado 1963), d 24 August 2004.