Excerpt taken from Dr. Allan Kellehear’s Foreword: “On Death and Dying” – 40th Anniversary Edition
“The book you are about to read, or reread, is one of the most important humanitarian works on the care of the dying written in the Western world. First published in 1969, its descriptions of exchanges between Dr. Kübler-Ross and her patients, about reactions to the impending death, are as fresh and insightful today as they were some 40 years ago. The fundamental value of this work lies in the dialogue between two people discussing the meaning of dying. Most of this book consists of chapters that, page after page, describe simple conversations between doctor and patient about the shock of bad personal news, about the aftermath of bad news, about the mind-games that are deployed to help us come to terms with the news that we will (might?) die. But there are also stories of hope and acceptance. The bioethicist Kuczewski (2004) is right when he observes that the most important and enduring point to these stories is till embodied in the original sub-title: What the dying have to teach doctors, nurses, clergy, and their own families.
I must stress early in this introduction that it is only by overlooking this principle aim of Dr. Kübler-Ross’s book – that of the privileging the voice of the dying – that a whole industry of mythmaking has resulted. It seems the case, especially among academic researchers, that much of the subsequent criticism directed at this work over the last 40 years has not been prevented by clear, early qualifications and provisos articulated by Kübler-Ross herself in her original preface, or by Colin Murray Parkes in his 1969 forward. However, the steady criticism directed at this book (and the five stages) has never succeeded in putting off millions of ordinary men and women looking for some basic understanding and insight into the social and emotional experience of their dying or those of their loved ones. Even today, if one reviews the hundreds of “customer reviews” on the websites such as Amazon.com, one cannot fail to be impressed at how useful this book remains for today’s readers for genuine insights and empathic descriptions of the social and psychological world of the dying.
Kübler-Ross stressed the fact that her book was “not meant to be a textbook on how to manage dying patients”. It was also not “intended as a complete study of the psychology of the dying”.
First, On Death and Dying was never a study of grief and bereavement. It was a discussion of some key emotional reactions to the experience of the dying. Yes, grief was a part of that experience, but it was not the totality of the experience.
Secondly, the so-called “stage theory” that you will read in this book is openly described and discussed as a heuristic device. In other words, these stages are merely a set of categories artificially isolated and separately described so that the author can discuss each of these experiences more clearly and simply. The careful reader will note Kübler-Ross’s own repeated warnings that many of these “stages” overlap, occur together, or even that some reactions are missed altogether. To emphasize this conditional way of taking about stages, the word “stages” was even put in inverted commas to emphasize their tentative nature in the only diagrammatic representation of these ideas in the book.
Thirdly, many of the “stages” of the dying described in the book have been subsequently simplified and publicly caricatured beyond recognition.
Fourthly, and rather inexplicably, On Death and Dying has regularly been mistakenly and mischievously construed as a research study. It is a popular book of description, observation, and reflection based upon a series of dialogues with dying people. The participants were not invited to be part of a research project but instead asked to talk about their experience to assist health professionals to understand their needs better.
However, the central message of On Death ad Dying is the importance of listening to what the dying have to tall us about what the dying have to tell us about their needs. Dr. Kübler-Ross has noted some of the repeated patterns of the emotional response of hope but also denial, of acceptance but often with conditions. She has offered us words or labels to describe these patterns of response to help us summarize them….” (Full foreword available in the 40th Anniversary Edition of On Death and Dying.)
Finally, On Death and Dying represents a lasting bridge between the in-house scientific/academic conversations about death and dying and the gaping need for information and discussion by the general public….On Death and Dying encourages ordinary men, women and children to converse with their dying, but also to forcefully widen that engagement to include a dialogue with the scientific, academic and clinical elites responsible for modern day caring of the dying. This useful background of public engagement, and this kind of social interface, becomes a basis from which we may ask searching questions of new poles, practices or technologies when these are introduced, remembering that these intervene at the most sensitive and vulnerable time of our lives. As it has in the past, On Death and Dying will continue to stimulate communities to engage our professionals, and other experts, on the ethical and social dilemmas we must all face in the newly emerging and often-complex forms of end of life care being offered to us in the twenty-first century.
Professor Allan Kellehear
Center for Death and Society
University of Bath, UK