Compassionate care for the dying started as radical idea

When I was 8 or so, my mother’s best friend died. She was like my aunt and I adored her. Her illness and death devastated me. No one had told me that she might die. We didn’t talk about death back then, certainly not to children. We didn’t talk about death with the dying person either, although I’m sure Margie had some pretty strong feelings about the matter.

Elisabeth Kubler-Ross changed all that.

Growing up in rural Switzerland, Kubler-Ross saw death as a normal part of life, with the dying supported by their loved ones and their community. Trained as a psychiatrist, she was stunned by what she saw in the American hospitals where she continued her education. Dying people were shunned and ignored by physicians and nursing staff. It was as if, having failed all their curative treatments, the dying were traitors. Death, the inevitable conclusion to life, was snatched from common daily life and hidden away in hospitals and nursing homes, to be cared for by the professionals who, it seemed, were not doing all that great a job.

Kubler-Ross’s radical idea was that the dying had stories to tell, and they wanted to tell them. The notions of this feisty woman were met by the hostility of her academic colleagues. They weren’t all that sure that women belonged in medicine, and they knew that her ideas about talking with the critically ill about death would only frighten them, and were therefore not to be condoned. The dying, however, felt differently.

Kubler-Ross insisted that courses on how to help people deal with death should be included in the curricula for all doctors, nurses and social workers. To prove her point, she invited a class of medical students to interview a 16-year-old girl who was dying of leukemia. Their questions were tentative and sterile. They asked about lab work and chemotherapy.

Suddenly, the girl angrily began asking her own questions. What was it like to know that you weren’t going to your high school prom? Or on a date? Or that you weren’t going live to be an adult? The students were stunned. Some even cried. “Now you’re acting like human beings, instead of scientists,” Kubler-Ross said.

Dr. Kubler-Ross taught us that it was all right to be a scientist and a human being. Through her exhaustive research with dying patients, she developed a framework for understanding the emotional stages a dying person passes through: denial (No way!), anger (Damn!), bargaining (What if?), depression (The bargaining didn’t work) and acceptance (All right … ). She taught us that in addition to treating a patient’s illness, we needed to treat the patient. That meant treating the symptoms of advancing illness, instead of ignoring them. It meant acknowledging the emotional trajectory the patient and her loved ones were on, and supporting them through it. It meant changing the attitudes of all of us, medical and lay people alike, toward the terminally ill.

Had my parents been familiar with Kubler-Ross’s work, they might have found a way to help me through my grief and fear over Margie’s death. Children should be exposed to death early on, she wrote, perhaps through the death of a pet. They should participate in the ceremony that surrounds the death of a relative or friend.

Kubler-Ross is credited with bringing the hospice movement to America. If she had done nothing else, her life is to be celebrated. But she did so much more. “Those who [learn] to know death, rather than to fear and fight it, become our teachers about life,” she wrote. “I always say that death can be one of the greatest experiences ever. If you live each day of your life right, then you have nothing to fear.”

Kubler-Ross died last month, at home, surrounded by loving family and friends. Thank you, Dr. Kubler-Ross, for teaching us all.