The book that started a revolution in how we care for the dying.
By Lama Pat Berube
Many years ago, In the ’70’s while living and working in New York, I attended a presentation by Elizabeth Kübler-Ross at Memorial Sloan Kettering Cancer Center. Her highly acclaimed book, On Death and Dying, had been published a few years earlier and I was excited to hear her speak about her work. After a short talk, she showed a film of her conversation with a man dying of cancer. Her sensitivity and compassion was very moving.
After this heart-opening experience, I reflected on the dramatic change in the dying man’s demeanor. Initially he appeared depressed and withdrawn. After the interview his appearance was soft, relaxed and open. Yet, what was most memorable for me was the sharp contrast between this beautiful exchange and the number of people who tearfully and hurriedly left the auditorium during her presentation.
Published 50 years ago, Kübler-Ross’ book, On Death and Dying, featured conversations with the dying, sharing their hopes and fears as they faced the end of their lives. At that time, no one in the medical community was giving a voice to people facing death. Her book and work is credited with giving rise to the hospice movement and the new specialties of palliative care, as well as opening up advances in geriatrics, psychology, clinical ethics, pain specialists and more. Her groundbreaking work opened up new fields for supporting end of life care and meeting the various needs of the seriously ill.
At the time her book was published, the medical community was not patient-centered as we now aspire to. It was highly authoritarian. The best doctors could always find a treatment to delay progression of an illness and death. Death of a patient was seen as a defeat. The sick and their families looked to medicine and doctors to change the direction of the illness and everyone avoided talking about dying. It was common practice to under-treat pain right to the last painful breath. I remember dying patients living their last days in poorly managed pain relief. To witness their suffering was heart breaking. No wonder people looked on at the immense suffering of their dying loved ones and perceived death and dying as a horrific experience to be denied and avoided.
As a psychiatrist, Dr. Kubler-Ross was most interested in how the illness had changed the psychodynamics of the person who was once well and is now seriously ill and dying. This led to her famous five emotional stages the dying commonly face: denial and isolation, anger, bargaining, depression and acceptance. She chose to write for the general audience and not the medical community. In so doing, she inspired a cultural movement to improve end of life care that continues to evolve today.
As we watch her conversations with the seriously ill, we can’t help but reflect on our own mortality and a wish for end of life care that eases our dying. Her work opened the conversation, restoring terminal illness and dying to the rightful domain of the person’s own personal process. Her compassionate presence with the dying, revealed our hidden fears, avoidance and attitudes and we didn’t like what we saw. We have come a long way sense then. These are profound lessons for the living as we learn that how we die truly matters.