by Barbara Ross Rothweiler, Ph.D., ABPP & Ken Ross
In the coming year, we celebrate the 50th publication anniversary of On Death and Dying, by Elisabeth Kübler Ross M.D. As her children, we are privileged that she is remembered, that we continue to hear her voice in the voices of others, and that we had the opportunity to learn from such a compassionate teacher and example. We appreciate the opportunity to share some thoughts about her work and her legacy.
On Death and Dying describes five stages commonly encountered as a person faces his or her own imminent mortality. This came to be known as DABDA: denial, anger, bargaining, depression, and acceptance. Even in the earliest discussions of these stages, she points out that the importance of the stages is to develop a way of communicating about and acknowledging emotional responses that vary within and across individuals and cultures. She explicitly states that the stages are meant to promote our understanding of our own and others’ reactions to loss as well as to facilitate health care providers’ ability to communicate with those who are facing loss, and not to define a rigid model of how people react to mortality. She states “the different stages that people go through when they are faced with tragic news….will last for different periods of time and will replace each other or exist at times side by side”. For example, in discussing the role of denial, she states: “Denial, at least partial denial is used by almost all patients, not only during the first stages of illness or following confrontation, but also later on from time to time. Who was it who said, ‘We cannot look at the sun all of the time, we cannot face death all the time?’ These patients can consider the possibility of their death for a while but then have to put this consideration away in order to pursue life “(p. 35). Importantly, she notes that regardless of how a person responds to mortality and loss, the normalcy of varied emotional reactions as well as health care providers’ ability to hear their patients’ communication is the importance of laying out these stages. In describing her goal for this book, she writes, “If this book serves no other purpose but to sensitize family members of terminally ill patients and hospital personnel to the implicit communications of dying patients, then it has fulfilled its task”.
More often than one might expect, the five-stages model has been criticized by individuals who propose that there are either fewer or more stages or that individuals may not go through stages in the order presented in On Death and Dying. It is important to note, that even when the stages were initially presented, they were described to reflect a simplification of a portion of her observations of interactions with many who faced death. The book’s preface reads “…how much can I share from this experience with dying patients? How many things are communicated nonverbally and have to be felt, experienced, seen, and can hardly be translated into words? 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 meaningful and instructive for all participants. It is not meant to be a textbook on how to manage dying patients, nor is it intended as a complete study of the psychology of the dying”.
Her work is an acknowledgment of the multitude of emotional reactions to loss, the significance of unconditional love and relationships, and the importance of living life to its fullest. On Death and Dying started a central conversation that elicited fundamental changes in the way health care approaches dying and grieving. When she developed these pioneering views, she was a young doctor practicing in an environment in which dying patients were not informed about the nature of their illnesses. Family members were not allowed to visit their dying loved ones, unless it was during predesignated visiting hours. Children were forbidden to visit their dying parents and siblings entirely. She fought against these practices at significant cost to her career and reputation. Even now, 50 years later, some barriers in the conversation about end of life care continue. Some providers continue to be hesitant to involve hospice or involve hospice care so late that patients and their families do not share in the needed resources that would be available to them. Many patients continue to be afraid to plan for end of life care. This conversation, which was in its earliest stages 50 years ago, must continue and advance for the benefit of patients and their families.
While the stage model is a very significant contribution of her work, it is important to remember that it is not the sum total of her work. The foundation of her work promoted the practice of ethics in health care and was centered on basic tenants of medical ethics, that is- respect for autonomy, justice, beneficence, and non-malfeasance. In current times, it is clear that patients are afforded autonomy in decision making about their own heath care. Patients now have a clear voice in the course of their medical treatment. However, when On Death and Dying was published, physicians made medical decisions often without patients and families being involved and often without them even being aware of their medical conditions. In the preface of On Death and Dying, she writes “It is simply an account of a new and challenging opportunity to refocus on the patient as a human being, to include him in the dialog, to learn from him the strengths and weaknesses of our hospital management of the patient.” “The sick person too has feelings, has wishes, has opinions, and has-most important of all-the right to be heard”. In her work with dying patients and their families, she vigorously supported the patient as the “underdog” in having their voice heard and honored. She believed firmly that supporting patient’s autonomy and empowering the patient was foundational in the canon to do no harm.
What’s next in this discussion? How can we continue to promote the ideas she worked so hard to advance in the world? There are always opportunities to ensure that we are focused on the priority of patients’ spoken and unspoken needs. There are also always opportunities to grow individually, and in our primary roles, and as a community.
Her lessons to us, her children, were taught in fearless love and by example and were consistent with her approach to the life and death. We remember some of her most frequent quotes: Every experience-painful or not-is an opportunity to learn and grow. Everyone has something to teach you. Don’t live life in perpetual fear. Don’t be afraid to make and acknowledge mistakes. Work hard, but don’t forget to play. Do what you love and you will do a wonderful job.
As we reflect over the past 50 years since On Death and Dying was published, we consider the impact that our mother’s teachings has achieved. The five-stages model has been embraced not only in the field of death and dying, but in approaching losses of all kinds, in business and even in entertainment because they resonate. They help people appreciate that varied emotional reactions to mortality and other losses are normal. She was instrumental in enabling patients to become involved in their own healthcare and to allow family members and important others to be present to support the ill and dying. We see the great compassion, breadth, and depth of her insight in her teachings about dying and living: “We can help them die by trying to help them live”.
On this 50th anniversary, we thank those who continue to remember her, those who work to support suffering people, and all who support the ideals she practiced to create positive changes in the world. We, her children, are grateful to have had the opportunity to be raised by this compassionate, curious, adventurous, determined, and courageous woman and the further opportunity to see a world changed by her.