'On Death and Dying'.
I first read "On Death and Dying" when it was published in 1969. Even the preface was absorbing: "I have worked with dying patients for the past two and a half years and this book will tell about the beginning of this experiment, which turned out to be a meaningful and instructive experience for all participants."
Meaningful and instructive, indeed. The revolution triggered by the book created hospices, palliative care, and programs on pain management all over this country. The care of the dying is in the forefront of medicine, and the voices of the dying are increasingly recognized. None of this would have happened without Dr. Kubler-Ross.
Her own life underwent a dramatic change with the publication of the book. She became an international lecturer on the five psychological stages of dying that she had identified (denial, anger, bargaining, depression, acceptance), and by the end of the decade she was president of the Elisabeth Kubler-Ross Center and the Shanti Nilaya Growth and Healing Center.
In her autobiography, "The Wheel of Life: A Memoir of Living and Dying" (Scribner, 1997) she said that the focus of her work on death and dying became clear when, at age 19, she visited the Majdanek concentration camp shortly after World War II and discovered butterflies carved into the walls by those about to die.
After medical school in Switzerland, Dr. Kubler-Ross came to the United States and was appalled by the care of dying patients. In "On Death and Dying," she credited a group of theology students with encouraging her to initiate the seminars that led to her first book.
The critical component of each seminar was an interview with a dying patient. To her surprise, she found it nearly impossible to find such patients. The physicians she approached reacted with stunned looks of disbelief and abrupt changes of topic. Some protected their patients, claiming they were too tired or weak to talk. Others simply refused to take part.
But she finally found a dying patient who was willing--even eager--to talk. So that the students could be present, Dr. Kubler-Ross postponed that first interview for one day. When they all arrived the next day, the patient was no longer able to hold a conversation. "[H]e died less than an hour later and kept to himself what he wanted to share with us and what we so desperately wanted to learn. It was our first and most painful lesson," she wrote.
She persevered, interviewing many dying patients. Not only did she and her students benefit from the data collected during those interviews, but the patients themselves all expressed appreciation for having been able to express their feelings.
"On Death and Dying" is no mere pop psych potboiler. It reads as a very well-or-ganized scientific monograph. It starts with the reasons for the seminars, goes on to describe the findings, and presents conclusions that appear believable and helpful.
Unfortunately, some of Dr. Kubler-Ross's central findings have not stood the test of time. Among psychiatrists who visit the same facilities I do, few truly believe the five stages are relevant today. For these clinicians, her work seems merely to have historical value, similar to the primal scream or the work of early Freudians.
The explanation, I suspect, is not complex: Until recently, death usually took people by surprise. Our knowledge of the progression of chronic illness was relatively limited. But now, we can tell people with a fair degree of reliability what their chances of dying from different diseases may be.
Perhaps as a result, the dying patients I follow tend to focus on treatment for anxiety and depression, as well as on planning and providing for others. Often, these patients begin careful preparations soon after hearing their prognoses.
Rather than considering Dr. Kubler-Ross's five stages, I am more able to help dying patients when I consider three fears--fear of abandonment, fear of pain, and fear of indignity--ubiquitous among patients who know their lives will soon end. I believe that addressing those fears should be central to the medical and psychological treatment of the dying. This is not to say that the book has only historical value. I, for one, appreciate the chapter about the dying person's family. Compassionate and forceful, it conveys opinions about emotional reactions, suffering, and depression that were later supported by solid research.
Unfortunately, the publication of "On Death and Dying" seems to have been the high point in Dr. Kubler-Ross' mutual understanding with the scientific community. In later years, she showed more intensely her personal interest in spirituality, mysticism, the afterlife, and--as her official biography says--"other less commonly accepted forms of therapy."
Although many followers are likely to remember Dr. Kubler-Ross for the ideas and theories she formulated in the years that followed "On Death and Dying," others, myself included, would like to remember the physician who used the logical tools of the scientific method to explore a better way of helping those who face the termination of their lives.
BY RODRIGO A. MUNOZ, M.D.
DR. MUNOZ is a psychiatrist in private practice in San Diego.