by Mark Siegler, MD
Dr. Elisabeth Kübler-Ross graduated from the University of Zurich Medical School, did her residency training at several hospitals in New York City, and then did fellowship training in psychiatry at the University of Colorado. On completing fellowship training, she stayed on as a faculty psychiatrist at the University of Colorado School of Medicine. In 1965, she was recruited to the University of Chicago as an assistant professor of psychiatry. Her first assignment at the University was as Acting Director of the Psychiatric Inpatient Service. One year later, she became Assistant Director of the Psychiatric Consultation and Liaison Service. It was during her years on the psychiatric consultation service (1966–1970) that she served as the Director of the Death and Dying Program. Also, in 1969, she published the book that made her famous, a book entitled, On Death and Dying. The subtitle of this book is very relevant to the work Dr. Kübler-Ross did. The cover of the original edition of the book reads, On Death and Dying: What the Dying have to Teach Doctors, Nurses, Clergy and their own Families.
Early in her career at the University of Chicago, in 1966, Dr. Kübler-Ross began to work closely with a hospital chaplain, the Reverend Carl Nighswonger. In 1965, Reverend Nighswonger had established the Death and Dying Program as part of clinical pastoral education, and by 1970 had trained almost 100 theological students, pastors, and chaplains in that program. During the five years that the project existed (1965–1970) and before Reverend Nighswonger’s sudden and untimely death in 1970, the Death and Dying Program had included almost 400 terminally ill patients who consented to discuss their terminal illness and to be “teachers” of those studying end-of-life care.
Working with Chaplain Nighswonger’s team Dr. Kübler-Ross helped to expand and intensify the University of Chicago program on Death and Dying. In addition to the chaplains trained by Reverend Nighswonger, Dr. Kübler-Ross taught medical students, psychiatry residents, and psychiatry attendings, on how to care meaningfully and effectively for terminally ill patients.
When I was in my senior year as a medical student at the University (1966–1967), I would frequently attend the weekly Death and Dying meetings. During that year, the meetings were usually directed by Dr. Kübler-Ross. Early in my medical residency, Dr. Kübler-Ross invited me to help her find dying patients whom she could interview at the weekly meeting of the Death and Dying Program. In those days, in the mid-1960s, dying patients were usually not told that they were dying or that they were terminally ill. In an era of paternalistic medicine, such honest revelations were frowned upon and discouraged. For example, a survey conducted at the Michael Reese Hospital in Chicago in 1961, revealed that 92% of doctors did not tell patients that they had a diagnosis of cancer. Also, the written medical record rarely documented that the patient was dying.
In the face of such obstacles, I began to talk with my fellow residents and would ask them if there were any patients on their service who they believed to be terminally ill or dying. It always amazed me that despite the resistance to talk about or write in the medical record about end-of-life issues, my fellow residents usually knew very well which patients on their service had terminal illnesses and which were likely to die shortly. The residents and I would then visit the patient to break the bad news about their terminal illness and to ask the patient if they would be willing to meet and to be interviewed in a public setting by Dr. Kübler-Ross, an expert on death and dying. To my surprise, patients whom we had just recently informed about their terminal disease almost always consented to be interviewed in front of a group of chaplains and medical students and medical residents.
To this day, I vividly recall the way the weekly Death and Dying meetings were organized. A patient who had been identified as “a dying patient” and who had given his or her consent to be interviewed by Dr. Kübler-Ross about end of life issues, came to the seminar room either on foot or by being wheeled in a wheelchair or a gurney. The patient was settled at the head of a long-table, opposite Dr. Kübler-Ross, while the remainder of the students and chaplains (usually 40–50) sat either at the table or on chairs adjacent to the table. Dr. Kübler-Ross would welcome and introduce the patient to the conference attendees and then would begin to interview the patient about matters relating to the patient’s terminal illness and about death and dying. In my 53 years of clinical work, I have never observed a better and more effective interviewer than Dr. Elisabeth Kübler-Ross. Within seconds of the interview beginning, the patient’s focus was entirely on Dr. Kübler-Ross, almost as if the other people around the table and in the seminar room did not exist. I always thought it was a breathtaking achievement to conduct an intense and seemingly private interview on the difficult issue of death and dying when many people in the room were at the same table and were observing the interview. Dr. Kübler-Ross was an interviewing genius.
During the five years that we worked together at the University of Chicago, I always regarded Elisabeth Kübler-Ross as a great physician. She was a brilliant psychiatrist, who had all the clinical skills I admire in a colleague and that patients hope for in their physicians. She always displayed deep concerns for her patients’ physical and psychological functioning. Her greatest abilities related to her deep and abiding respect for her patients, her constant display of compassion even for patients she had just met for the first time, and her willingness to help patients with the decisions they would make. These abilities were not routinely displayed by most physicians in the 1960s, an era of medicine when paternalism remained the prevailing and dominant tradition in the doctor-patient relationship.
In those days, when “death and dying” were regarded as almost dirty words, words that were prohibited from being said to patients or even to physician or nursing colleagues, Dr. Kübler-Ross somehow overcame this barrier. As she said in her famous 1969 book, On Death and Dying, “When a patient is terminally ill, he is often treated like a person with no right to an opinion… decisions are made often without his opinion.” “Early in my work with dying patients, I observed the desperate need of the hospital staff to deny the existence of terminally ill patients on their wards”.
Dr. Kübler-Ross helped to change this denial of the existence of terminal illness. In 1970, the year after she published her great book, Time Magazine wrote: “The Chicago Death and Dying Seminar has vanquished the conspiracy of silence that once shrouded the hospital’s terminal wards. It has brought death out of the darkness”.
In the past generation, thanks in large part to Dr. Kübler-Ross’s great achievements, our society has made major advances in dealing with death and dying, or as it is now often called, end-of-life-care. In most end-of-life cases, especially those within institutions, death is almost always anticipated; it is discussed by the family and medical team; and decisions are reached that are almost always non-adversarial and do not require a legal opinion. In 2007, a survey of physicians conducted at the University of Chicago reported in the New England Journal revealed that more than 95% of physicians accepted reasonable decisions about withholding and withdrawing life support for terminally ill patients. Thanks to Dr. Kübler-Ross’s pioneering work, programs in both palliative care and hospice care are now widespread across the U.S. In the 50 years since Dr. Kübler-Ross published her groundbreaking book, US health professionals have made enormous progress in openly discussing terminal illness with patients and in helping patients, and when necessary their surrogate decision-makers, to reach prudent and reasonable end-of-life decisions.