Like many such books that are written quickly about a promising new idea, On Death and Dying was vulnerable to some obvious criticism. Two hundreds cases in one urban hospital did not impress people who were looking for scientific rigor. If one is going to claim that every dying person progresses through stages, the obvious failure of the book is that it does not follow any individual through all five stages. Many cases are cited for illustrating each stage, but, even there, the interpretation of what each case illustrates is often very ambiguous. Despite these drawbacks, or possibly because the book does not follow scientific procedures, On Death and Dying had amazing appeal. The raw nature of the data and the naive approach to method made the book almost impenetrable to criticism.
Kübler-Ross never followed up On Death and Dying with the proper scientific controls. That probably would not have worked anyway. The book has inspired dozens of doctoral dissertations but none that has served as a comprehensive support for her book or a serious alternative. Like many authors whose first book is a sensational success, Kübler-Ross in her subsequent career made occasional references to the book but mostly she became involved in other projects that could not match the popular and commercial success of the initial work.
Outsiders often express regret at an author’s failure to live up to expectations but the author may feel that he or she has gone on to more important things. In Kübler-Ross’ case, she used her talent and fame to spark interest in the hospice movement, with its palliative care for the dying, and to raise awareness of the care of AIDS babies. History may show that her greatest work has been in helping to found hospice in the United States.
When Kübler-Ross became interested in the spiritual side of dying, many people were disappointed and some people ridiculed her. Her reputation suffered when she became involved with a charlatan named Jay Barnham who claimed to channel spirits. Her writing suffered in quality. The speeches she gave after 1980 and her autobiographical memoir are filled with dogmatic pronouncements and carelessly formulated generalizations.xxiv
Much of what she later wrote seems to undermine the early book. Although she would blithely dismiss this criticism, many of her supporters, as well as opponents, see this later development as unfortunate.xxv My interest in this chapter is not to join with Kübler-Ross’ severest critics or to bemoan her failure to continue in the direction that On Death and Dying suggested. Instead, I will attempt a close critical reading of On Death and Dying, with references to her later writing when helpful for interpretation.
Stages of Development
Did Kübler-Ross write a theory of development? I doubt that was her intention but such a theory is what most readers took from her book. She may not have given much thought to her choice of the word “stage.” That term, and the naming of five stages, inevitably fixed On Death and Dying into the history of developmental theories. Such theories exercise fascination for people who are trying to figure out where the world is going (a population that might include just about anyone). Despite the disclaimers of their authors, “stage theories” become employed for their supposed predictive power.
Kübler-Ross’ original intention, stated at the beginning of On Death and Dying, was admirably modest. She writes: “I am telling the stories of my patients who shared their agonies, their expectations, and their frustrations with us.”xxvi But once the book was published and became famous, she was subjected to questions about her method, theory, and sequence of stages. She never attempted an overall restatement or a theoretical defense. Very often, she simply concedes the point of a specific criticism: “Yes, a patient can skip a stage....Yes, a patient can regress to an earlier stage....Yes, a patient might be in two stages at the same time.”xxvii The trouble with conceding one small point after another is that eventually no pattern remains. Unlimited variations in a sequence undermine the idea of a sequence. Perhaps she would not be perturbed by that conclusion; however, she certainly insisted that the stages should lead to “acceptance” and that once arrived there the patient should not regress.
I think it is worth offering an interpretation of the “five stages of dying” that would retain for it some theoretical validity and some practical significance. I suggest that Kübler-Ross did make an important discovery about dying but that the famous five names can be misleading. What can be defended is an understanding of the process of dying that is simpler and at the same time open to more variation. It is worthwhile to try to find a pattern for the experience of the dying.
In one of her ill-advised comments on the five stages, Kübler-Ross said: “This is not just typical of dying, and really has nothing to do with dying. We only call it the “stages of dying” for lack of a better phrase.”xxviii Taken seriously, that comment would completely undermine her book. What I think she was trying to say is that the stages of dying are so important because they reveal the structure of life itself. Precisely because the focus is on dying, the stages are about living which inevitably includes dying.
Kübler-Ross’ five stages give the obvious impression of being one more theory of development. As such, this theory of dying would take its place next to economic, psychological, social, moral, religious and other theories of development. However, the fact that this theory ends in death makes it unusual, to say the least. Theories of development, whatever the field, are about improvement, progress and success.
I wish to argue that Kübler-Ross’ “stage theory,” instead of being one more developmental theory, is a challenge to the very idea of development itself. If dying is at the end, what sense can be made of theories that promise improvement and success? One would then have to ask of any theory of development: Does it stand up to the particular progression that Kübler-Ross claimed to document?
The Development of Development
A brief history of the idea of development is needed to situate the stages of dying. Development is not just a modern idea; one could say that it helps to define what modernity is. It has emerged as a more comprehensive term than either evolution or progress, each of which has some notes in common with development. The two greatest users of the term development in the present are economists and psychologists. Each group tends to assume that they own the idea and they tend to be oblivious of its use outside their respective fields. Of these two groups, the economists clearly have the longer hold on the term. The language of developing and developed nations is firmly set in popular language.
The psychologists were relatively late on the scene, but if one finds a course named “human development” in a university catalogue, it is most likely in the psychology department. A question that does not seem to have a place in the university is whether theories of psychological development are biased in the direction of the economically developed world, and conversely, whether the idea of economic development reflects one psychological mind set. The world could use a study of the development of development that might better situate particular theories of development and initiate dialogue between them.
The idea of development seems to have arisen from a protest against, but also an assimilation of, ancient and medieval systems of thought. (The division of ancient, medieval, and modern is itself a product of the idea of development). The early moderns liked the idea of history having meaning and direction, an idea that had roots in Greek, Jewish and Christian histories.
Christianity had begun by proclaiming an end to history, an ambiguous phrase that can embrace nearly opposite attitudes toward history. Much of early Christianity took the “end” literally. History would give way to a meaning at its end or conclusion. That did not happen. Gradually there was a shift to the belief that the end was not imminent but immanent, that is, the meaning of end was absorbed into history. The meaning of history was to be found in history itself which was thought to move toward a third age or third stage. This vision of a third age, beyond the conflicts of the previous two, has haunted Western history since the twelfth century. A movement upward and forward toward a better state is the background for modern development.
While the idea of progress had arisen many centuries earlier, theories of progress or development awaited the late renaissance and early modern era. Even with the belief in history’s meaning, Christianity had retained the idea of a final judgment beyond history. For the individual, heaven and hell still fixed the limits of possibility. The choice was between taking the path that God had laid out or else rebelling against the road to heaven. At the collective level, the choice was between a fair and an unfair distribution of the goods that had been provided by a benevolent creator. Modern developmental theory is the attempt to retain the direction toward a better life while eliminating the end point toward which history moves. Not only the Christian heaven but Aristotle’s teleology had to be dismantled.
Can we get rid of an end point but retain a clear direction of progress? Is it possible for us to be moving clearly in one direction if we are not moving toward anything? There are two ways to imagine a positive answer to that question. The first image is “growth,” a movement forward and upward. The second image is movement around and within a sphere to achieve a harmony.
Growth. The image of growth has dominated most theories of development. In fact, “growth and development” is often taken to be a single phrase. Economic development occurs if humans put together their ingenuity and the organization of resources with the result that the goods of the world can grow indefinitely. At the level of individual psychology, when humans use their own creativity, new paths can be constantly opened for human exploration. The image or metaphor of grow seems endlessly applicable with a sense of infinite possibility.
Economics, which set the standard for development, has found the metaphor of growth more than congenial. No one argues about the value of higher gross domestic product, quarterly rates of expansion, or a rising stock market. Development means upward and forward. Politicians in the 1990s adopted the phrase “growing the economy” to indicate betterment of life. Some psychologists might question the metaphor of growth, but this particular metaphor enveloped modern psychology from the beginning and it has retained its dominance.
One factor that explains psychology’s attachment to growth is that “developmental psychology” was at first about children. Human development as growth – the metaphor coming most directly from biology – seemed to be appropriate for children. Jean Piaget’s classic studies of cognitive power go up to age twelve; Piaget said he had no interest in studying “growth and development” beyond that age.xxix Piaget, as biologist and logician, was focused on how the body and the mind’s judgments grow together. But if one extends “human development” to include adults, the metaphor of growth runs into trouble. Should adults be growing when they are no longer growing up? Do people actually grow old?
What may be seen as a small problem of logic in psychology became a major issue in ecology. Since the 1960s, the ideal of growth has been subjected to severe criticism. The assumption that bigger is better, it turns out, can have disastrous consequences when applied throughout the environment. The United States, with its gargantuan appetite for the world’s resources, has often been compared to a cancer in the world’s body politic. And, indeed, cancer is thought by some people to be the disease that appropriately symbolizes our world-wide environmental problems, that is, a disease in which some cells grow wildly at the expense of others, oblivious of the problems caused by their unrestrained growth.
Despite the now obvious problems with growth as a metaphor for human development, it retains its rhetorical place as a cultural cliché. James Hillman, the maverick psychologist, suggested that human development might better be described as shrinkage, but not many are ready to follow that lead.xxx Gail Sheehy, at the beginning of a book on development, describes a woman who, after countless travails of life, declares: “I will never adjust downward.”xxxi One can sympathize with the woman but still wonder whether she could use a different metaphor for her life’s journey. Similarly, I think Elisabeth Kübler-Ross picks up an inadequate metaphor from today’s psychology when she writes in the next to last sentence of her memoir: “Our only purpose in life is growth.”xxxii It is not obvious how death fits in with growth.
Integration. There is a second metaphor for development, one that is more compatible with Kübler-Ross’ findings about the dying. The movement in this development is not toward an object that can be pictured nor is it an expansion that is measurable quantitatively. The closest one can come to illustrating this movement is to describe it as a series of cycles moving toward a harmony around the center of a sphere. Movement forward can also be downward; movement upward may be a going backward. Only after a pattern of many cycles can one judge whether there is progress toward integration of the whole.
In this form of development, a movement to the future is at the same time a recovery of the past. Quite often as people age, the memory of what happened decades ago sharpens, even as their short term memory falters. In this development, the journey of life would not be conceived as moving toward an end point but toward a unity of conflicting forces in one’s life. Progress is not just forward and upward but in and out, around and back, aesthetic and playful. In this image, death is not the end point of life but is the center around which all human activity dances.
Modern sciences, including psychology, have not been very successful at incorporating death into theories of development. Most developmental theories could be compared to describing the progress a man makes as he takes an elevator to the top of a high-rise building. What is left out in these theories is the fact that when he reaches the top the man is then pushed off the roof. Freud was led to theorize about a death drive that struggles with a pleasure principle. Freud had few takers for his death drive, which seemed to be a counsel of despair.xxxiii
Erik Erikson proposed a series of tensions in life, the last being the struggle between integrity and despair.xxxiv Dying might be situated better here than in most theories of development, but Erikson did not address death in any detail. Robert Jay Lifton proposed a corrective to previous developmental theories by making the experience of death central. Lifton’s writing career included a constant awareness of death and its presence throughout life, but his theory of development was left fragmentary.xxxv
I would argue that Kübler-Ross’ On Death and Dying could contribute to our understanding of development by providing a better understanding of dying and how living moves toward dying. Incorporating stages of dying into developmental theories would make all of them more realistic. The pattern of dying could mean progress toward a unity, a progress that neither smuggles in an end point nor relies on an image of growth.
I think that Kübler-Ross did discover a pattern in the lives of patients who had time to prepare for death. The pattern may more resemble medieval writing on mysticism than modern theories of development. In the mystic’s journey there is movement between the positive and the negative, light and darkness. The pattern can be repeated many times. The culmination of the mystic’s journey is a “unitive” state in which the separation of subject and object is overcome.
Kübler-Ross is thought to have discovered a pattern with five stages. Her five stages were actually four stages and a conclusion. Furthermore, the even number of stages is more significant than the number four. There might be two stages or there might be six, eight or ten stages. The stages could be given various names; the four that she happened to choose are appropriate. So also would be terms such as resistance, evasion, deliberation or protest.
I suggest that the movement toward dying is characterized by a dialectic of “yes and no.” In the next section I will document from her book that this pattern is what Kübler-Ross found. At its simplest, the pattern has two stages. A yes to life, throughout our lifespan, is a no to death. We avoid, deny, and resist dying every day. When people are informed that they have a fatal disease, their first reaction is to say no to death, yes to life. That is what they were already doing but they now do it more emphatically. Eventually, a second stage is entered where the no to death is overtaken and a despairing yes to death is a no to life. This two step process can be repeated many times. As dying approaches, the yes to death keeps deepening.
The resolution in the life of the dying person comes about when the yes and the no are not seen as excluding each other. Having circled back to encompass all of one’s life, the dying person accepts that life includes dying and that one’s life is now complete. Thus, the stages of dying culminate in a yes to life which now includes death. Dying is now understood not as an unintelligible catastrophe at the end point but as a force that has been present since birth. The wise among us possess this knowledge long before the x-ray results show terminal cancer. They know that to live fully one must risk dangers, that every day has small dyings that prepare the way for the final dying, and that one must find a meaning in dying in order to find a meaning in living.xxxvi
Stages of Dying
A contentious issue that surrounds theories of development is whether an author is describing what exists or what should exist. The question arises about all ethical statements, but it becomes especially acute when applied to developmental theories that eschew moral judgments but seem to smuggle in notions of the good, the better and the best. The question can be and has been raised about Kübler-Ross’ stages of dying; and it would also apply to my interpretation of her stages as a dialectic of yes and no.
Authors very often try to defend their theories by claiming that they are just describing the world. For example, a book on adult development that rivaled Kübler-Ross’ book in popularity was Gail Sheehy’s Passages: Predictable Crises of Adult Life. Sheehy insisted that she developed her catchy names for stages of adult development after she read 115 biographies. “Therefore, those patterns are descriptive not prescriptive.”xxxvii This defense seldom works. Readers embrace the theory because it offers direction out of the unpredictability of life, an idea encouraged by the subtitle of Sheehy’s book.
Kübler-Ross regularly struggled with this question when she was asked whether “acceptance” should be the goal for every patient. She clearly implies that acceptance is the ideal toward which patients should move but she nonetheless said acceptance was not the goal. She acknowledged that this “may sound as if it were a contradiction and I think it’s a matter of semantics.”xxxviii
She is right that the question is “semantics” but that is the crucial point here. How does one state these theories and how is one to understand the words? One can sympathize with Sheehy and others who wrestle with the choice between description and prescription. It is the wrong “semantics.” The first term, description, is excluded as soon as the author chooses, organizes, and interprets data. But the second term, prescription (to write beforehand), is a grandiose and indefensible claim, no matter what data have been collected. When applied, for example, to language itself, the result has been a fruitless argument between people called descriptivists and prescriptivists.xxxix
The metaphor of prescription is taken from the medical profession. On the basis of symptoms, the physician describes a problem and the lab tests confirm the description. The physician then writes out the prescription for the pharmacist. If the prescription is correct, the problem is solved. Even in the medical profession, the language of description and prescription is of limited value.
Consider an alternative metaphor drawn from the legal profession. If accused of a crime, I hire a lawyer to be my advocate in court. From conversations between lawyer and client, a strategy is devised to argue before the judge or jury. If one approach to my defense is not working, another might be tried. It is a fallible process of persuasion to get to the underlying truth that I am innocent. The task is not to prescribe but to advocate. Success is found in being judged not guilty. In trying to chart a developmental theory of any kind, the truth is what is sought but it is too complicated for our language to encompass. The best that one can do is advocate a way of speaking that is better than any available alternative.
Advocacy should be based on language that is persuasive because it is historically well-grounded and because the writer or speaker is aware of contemporary connotations. The names that Kübler-Ross chose for her advocacy of four stages (denial, anger, bargaining, depression) are appropriately ambiguous. They can signify something good or bad, depending on the context. At the right moment each of them is good; when the circumstances change, each of them can be bad. Only “acceptance” which she chose for the culmination of the stages is good by definition.
In Kübler-Ross’ advocacy of a language to describe the process of dying, her best choices are “denial” and “acceptance.” In fact, she could have worked through the whole process with only those two terms. That surmise is suggested by her statement that “denial is usually a temporary defense and will soon be replaced by partial acceptance.”xl What can she mean by “partial acceptance” and what about the in-between stages? She must be implying that acceptance is not a last stage in a sequence of five, but a theme that runs throughout the four stages and is gradually being filled out.
Corresponding to partial acceptance, she could have referred to “partial denial.” She does not in fact use that phrase. She uses denial as the initial reaction that almost everyone experiences in receiving a death sentence. “There must be some mistake....I’m too young and healthy to be dying....I need a second opinion.” In popular speech, a person being “in denial” is thought to be in the worst way possible. And, indeed, if a person were in complete denial about everything, he or she would be cut off from reality.
Perhaps surprisingly, Kübler-Ross has a good word to say about denial. “Denial functions as a buffer after unexpected shocking news, allows the patient to collect himself and, with time, mobilize other, less radical defenses.”xli The person is not denying his or her mortality, just denying that this disease is the end. The response of a friend of mine to being diagnosed with prostate cancer was “I am going to die with this disease but not from this disease.” The determination to deny this disease’s finality at this time is a healthy basis on which to affirm one’s life. It is a no to death, a yes to life.