Re-Reading On Death & Dying: What Elisabeth Kubler-Ross Can Teach Clinical Bioethics
by Mark G. Kuczewski
2004. The American Journal of Bioethics 4(4):W18

The best book in bioethics that I read this year was published in 1969, Elisabeth Kubler-Ross’s On Death and Dying. By coincidence, a couple of days before this renowned author’s death, I picked up a copy and began reading it. I could not put it down.

In my memory, a memory stocked with the recollections of a college student who was interested in psychological theories, this was a book about stages of dying, a concept that was easily mastered. It seemed to be a book that was too long for such simple thoughts. But as I read it this time, I was struck by the pages upon pages of compelling patient narratives; so many narratives, so little theorizing. I was tortured by not being able to stop reading even though the multitude of compelling stories was exhausting me.

As I read about how those near the patient avoided the subject of death and how unfriendly and lonely the confines of the hospital could be to the dying, I uttered the expected and trite, “Nothing’s changed.” Of course, the truth is that the situation is analogous to many other social issues in our country such as those of racism and discrimination. Namely, a great deal has changed but the kinds of problems we encounter can still be surprisingly similar to those of 35 years ago.

The more I consider the work of Kubler-Ross and my own reaction to it, both as a person and as a clinical bioethicist who routinely does clinical case consultations, the more I think that her work reflects tensions that may be perennial when working with dying patients. So, we have a case of “good news, bad news.” The good news is that On Death and Dying speaks to us as clearly, perhaps more clearly, today than it ever did. The bad news is that this work is so relevant because it encapsulates problems for which there will be no decisive quality improvement initiatives. Let us explore these tensions in our work.

TENSION #1: HEARING THE PATIENT’S VOICE V. MEDICALIZING THE CASE
What is so obvious in hindsight is the effort Kubler-Ross made to help the patient’s voice be heard. On page after page of On Death and Dying, we hear patients speaking of their concerns about being ill and dying and their needs at this important point on life’s journey. Any contemporary reader cannot resist taking the book’s subtitle seriously, a subtitle that almost escaped notice for many years, What the Dying Have to Teach Doctors, Nurses, Clergy, and Their Own Families. They often teach us that they feel isolated and lonely because people will not speak candidly of the possibility of death. They are sometimes worried about how dependent family members will fare without them but they also have many of the mundane concerns of everyday living such as vain worries about how others perceive them or trying to be useful in their day-to-day existence.

Kubler-Ross seemed to have no doubt that simply prompting patients to express these many thoughts, feelings, and concerns would be helpful to them. The patient would feel better, i.e., happier. The patient might find it easier to then share thoughts and feelings with intimate family members and friends. Such discussions could address concrete problems and relieve the patient of responsibilities and burdens that prevented the patient from dying in peace. And, relationships might sometimes achieve a new level of intimacy and closeness through this sharing. Of course, things don’t go so smoothly for every patient and we’re advised by Dr. Kubler-Ross to simply remain available to those who are unable to share at the first invitation (Kubler-Ross 1969, 231).

The main tension of the book is that talking to patients leads to talking about them. When we speak about them, we do not simply repeat what they say. We look for common threads, for typicalities. We analyze their words so that we can categorize their meanings. And, of course, the main device to speak about patients that the book offers is Kubler-Ross’s famous typology of the stages of the process of dying. Because these stages are conceived to be psychological categories into which we can place patients, potential pitfalls abound.

The development of categories can yield understanding and provide a short-cut to insight concerning particular patients. Understanding a patient’s psychology can be a vehicle by which to empathize and to relate. But analysis and categorization can lead to treating a state of affairs as a problem to be overcome and mastered, and the particular patient can again be hidden behind new labels that prevent genuine communication. For instance, knowing what kinds of concerns and fears dying patients typically confront can sensitize us their needs and open the door to communication. However, believing we know what each patient is experiencing because we can see their underlying psychological reality can lead us to ignore what patients say.

For instance, hen we label a patient as “in denial” about their impending death, we may simply be saying that the patient has only begun to understand and integrate what has been said to him about his impending death. We may follow Kubler-Ross in believing that such denial is never “total” and invites our engagement (Kubler-Ross 1969, 264). We may even be assuming that the systemic and cultural milieu of the clinical setting is the primary culprit at work and that we must transcend these environmental limitations. As Kubler-Ross notes, “[Patients in her seminar] clearly indicated that they used denial when the doctor or family member expected denial because of their dependency on them and the need to maintain a relationship” (Kubler-Ross 1969, 263). However, such terminology easily becomes a label that renders further conversation superfluous. After all, why ask a patient in denial about how we can be of help? Doesn’t the label mean that we know things about the patient’s situation that he doesn’t know and, indeed, is incapable of completely grasping? Although denial is clearly the most dangerous label in this regard, being able to pigeon-hole a patient into a stage can have the same effect on our relationship with him or her. That is, it places us in a situation above the patient, much as an adult can claim to understand a child that cannot be reciprocated. That is, the adult might claim to understand a broader perspective and see the child’s self-awareness as limited. As the metaphor suggests, labels and techniques can be justifications for the reintroduction of the very paternalism that perpetuated the denial of death in the clinical setting.

These insights sound almost too obvious to be worth mentioning. However, we are often seemingly unconscious of how this same tension between making an opening through which we can hear the patient’s voice and creating techniques that re-mask the individual, permeate our efforts in clinical bioethics. We have moved into an age of increasing technique and specialization in dealing with the dying process. We have scrambled to introduce palliative care consultation services, palliative care units, and hospice services into our health systems. The patient’s situation must be recognized and categorized, usually by an attending physician, as fitting for these services or no referral is made. How often we hear someone raise the question of such a referral for a terribly ill patient who will clearly not recover only to hear a physician say, “We’re not at that point yet,” or “That would be premature.” Then, when the physician has decided the intensive interventions are no longer warranted, she gives way to the systemic pressures to redirect the level of care and transfer the patient quickly, often within a matter of hours. The process is driven by diagnostic categories, reimbursement guidelines, clinicians’ judgments of patient needs and appropriate levels of care, not the voices of patients and families.

Of course, there were good reasons for this turn to specialization above and beyond a sheer love of technique. Introducing the concept of patient autonomy into medical ethics did not seem to change the way we died (Lynn et al. 2000). Thus, new approaches to dying are molded into the cultural framework of the clinic by introducing new specialties and clinical pathways. When done well, these approaches are designed to fit the needs patients typically confront in their situations. But, we must continue to acknowledge that these approaches are not driven by the individual patient but by the medicalized framework into which we must fit each patient.

Perhaps the eclipse of the patient’s voice behind the new medicalization of death reaches its inevitable conclusion in the futility movement (Youngner 1988; Schneiderman et al. 1990; Helft et al. 2000). We learned from listening to dying patients that highly aggressive, potentially death-prolonging, interventions such as cardiopulmonary resuscitation did not make sense for them. But, we also concurrently lost faith that those rare patients who continue to insist on such interventions know what is best for them. With an attitude of “we know better,” we deemed these interventions “futile” or “medically futile” and suggested that doctors could unilaterally make the decision to withhold these interventions. They need not even ask the patient.

I do not mean to claim that the current approaches to alleviating the suffering of the dying are not a dramatic improvement over former states of affairs. They are. Nor do I wish to suggest that advocates of futility policies have no point to their position. I simply mean to suggest that On Death and Dying exhibited an intrinsic tension, one that we keep playing out in different guises. Namely, it opened our ears to magic of the voice of the dying patient and that voice demanded we respond. But it also demonstrated how easy it is to become insensate due to our very efforts to develop systematic responses to what we have learned from those voices.

TENSION #2: THE RIGHT WAY TO DIE V. BETTER WAYS TO DIE
A very similar and unavoidable tension seems to exist between the desire to help patients experience a good death and imposing a right or correct way to die. The very concept of stages of dying suggests that earlier stages are inferior and stepping stones to later stages. Stages suggest development and we speak of “successful completion” of a stage which implies we move on to a more challenging one. As we list the stages, the very words evoke evaluations. Who wouldn’t rather be bargaining than in denial, in acceptance rather than bargaining? And who wouldn’t perceive themselves as a failure if they were told they were in denial?

In contrast, much of On Death and Dying is based on the simple assertion that by inviting dying patients to share their thoughts, experiences, and concerns, the patients’ lives are improved (Kubler-Ross 1969). When Kubler-Ross tells us about her patients, they are described as having improved and deepened relationships with significant loved ones, as finding meaning in being able to help others by sharing their experiences, and as resolving care issues for those they’re leaving behind. While dealing with such concrete conflicts can aid in achieving acceptance of impending death, patients are virtually never described as passing from one stage to another as a result of their interviews.

What concerns us is that we might deal with patients as if they are getting the dying process wrong. It is one thing to act as if a patient might benefit from discussing what’s on her mind, it’s quite another to insist that a person is not successfully coping because it dos not fit our own image of acceptance. And, of course, the height of arrogance is to judge that there is something wrong with a patient because she doesn’t want to talk to us at all.

In clinical bioethics today, we continually confront this tension, albeit not in the language of stages of death. When conflict or indecision clouds end-of-life decision making within the hospital setting, an ethics consultation is often requested. Most consultants work within a consensus-building framework in which we try to reconstruct the patient’s illness narrative and mediate among the many points of view of the patient, the family members, and the health-care providers. We implicitly assume that talking will somehow help what ails the situation. When reviewing these consultations with our colleagues, we sometimes disparage this practice by saying that “we really just deal with communication issues, not so much ethics.” In our more honest moments, we admit that something special often happens when family members and health care professionals must come to consensus over difficult issues. Judith Andre has speculated that what takes place is a kind of “moral development” (Andre 2002). Yes, a process by which people come to acknowledge the values and point of view of those with whom they disagree and can forge a way to continue to be a part of this supportive team often requires that people take a small step forward in their character development and grow morally, even if only very slightly.

But, this view of ethics consultation embodies an ideal of how decision making should take place over life and death matters. Nevertheless, many of us who practice this craft are rather convinced it is better than the alternatives, e.g., that one simply determine whose right it is to make a particular decision and follow whatever that person says when asked. Our positive ideal assumes people are communal animals who generally do better through engagement than isolation, through consensus building than assertion of individual rights (Kuczewski 1997).

How can we maintain openness to each new encounter in a way that allows us to hear the stories of those involved without prejudging how they should resolve the conflict at hand? How can we remain willing to be the ones who grow and develop morally in seeing points of view that we had not fully appreciated? How can we sustain this humility but still confidently offer what knowledge and skills experience has provided? This is one of the central tensions in On Death and Dying; it is a tension that is re-lived daily in clinical ethics consultations. It is a tension we must not resolve.

TENSION #3: EXPLORING SPIRITUALITY V. PROFESSIONAL DISTANCE
On Death and Dying is a book in which religion and spirituality do not play especially large roles. As one would expect, when patients are asked to speak about death, they sometimes mention the role their religion plays in their orientation to it. But Kubler-Ross did not believe there to be an appreciable difference in adjustment to dying between those who were religious and those who were not (Kubler-Ross 1969, 266). The book evidences a sense of professional distance. That is, in the transcripts of the patient interviews, Kubler-Ross is clearly in the role of the physician-interviewer and usually addressed as “Doctor.” She keeps the interviews focused on the patients and there are no noteworthy moments recorded in the text where she shares reciprocally in response to a patient’s self-disclosure. However, she provides an overview of the responses of other health-care and clinical professionals who participated in the seminar or who referred patients for the interviews (Kubler-Ross 1969, 247–268). However, this restraint did not characterize much of her work that followed in subsequent years.

Kubler-Ross fell from grace with most scholars interested in the care of the dying because she went “over the top” in her interest and speculations concerning the afterlife. By focusing so much energy on life after death, she seemed to have entered the realm of the pseudo-scientific and contaminated her objectivity with her subjective spirituality. Insisting on a fact of life after death can easily seem to be a form of the denial of death. Certainly it is not a reasonable goal for bioethics to teach the world anything one way or another about the afterlife.

Again, in her own way, Kubler-Ross foreshadowed a tension that permeates contemporary clinical bioethics. That is, contemporary clinical bioethics has long emphasized respecting patient autonomy and wishes. As a result, we generally counsel that providers keep their values and personal experiences to themselves so as not to unduly influence patients. And, patient autonomy usually means that all patient values are the same from the provider’s perspective. That is, it is not up to the physician to engage the patient’s values or question them. Many approaches to informed consent take the patient’s values as a given and see the role of the provider as helping the patient to select the treatment plan that accords with his or her values. But this has sometimes proven inadequate.

Increasingly we are thrust into situations in which we must probe the content of a patient’s wishes. To help a patient translate his beliefs into a treatment plan requires that we explore the content of those beliefs. As Kubler-Ross seems to have known better than us, we explore not only for informational content but to allow the patient a process of coming to self-discovery about the meanings of his or her beliefs (Kubler-Ross 1969, 90–92; Kuczewski 1997, 147–148). And, to fail to engage these beliefs adequately, in the name of professional distance, can sometimes exacerbate a bad situation either by focusing on treatment choices without exploration of the values and beliefs behind them or by allowing misunderstandings to take root. For instance, a patient can easily mistake professional distance for lack of caring or even condescension toward his beliefs.

It is a conversational norm that personal disclosure calls for reciprocal disclosure by one’s interlocutor. But this is complicated by the fact the physicians and their patients are in an inherently unequal relationship and reciprocal disclosures can de-center what should be a patient-centered relationship. Nevertheless, as patients pour forth their religious or spiritual beliefs and providers remain unresponsive and say little or nothing that directly addresses the content of what has been told to them, patients can easily see the physician as behaving in a manner that seems to exude superiority. But, how shall we deal with such matters in a way that connects with patients but keeps them at the center of the circle of the relationship? Bioethics has only just begun to consider such questions (Cohen et al. 2001; Lo et al. 2002).

CONCLUSION: THE CALL OF DEATH OR DEATH AS A CALLING
Of course, the main reason On Death and Dying remains such compelling reading is that it is a book that shows death in all its mystery, horror, glory, and mundane-ness. Once one has confronted the dying process in this way, service to dying people exerts a powerful attraction.

When I entered the field of bioethics fifteen years ago, I first approached clinical decision-making in legal terms such as rights and through philosophical constructs such as patient autonomy. But, clinical observation quickly showed such approaches as insufficient to capture the richness of the lives and persons involved in complex interpersonal processes. In these processes, we are privileged to see people in vulnerable situations who allow us insight into their fears, hopes, and conflicts. We talk with a husband who cannot let go of his wife despite her grim prognosis and we listen to her cry as she despairs of the suffering she has undergone. We watch seemingly intractable conflicts among family members dissolve as they have opportunity to express their thoughts and come to feel respected. And we say goodbye to a patient who is preparing for death.

We walk away and turn these intimate encounters into cases we review with colleagues. We analyze them and search, often in vain, for the ethical content. But somehow simply facilitating communication can make subtle but incredible things happen in these end-of-life consultations, things that easily evade our post hoc parsing of the case. In On Death and Dying, this subtlety is recognized and illustrated over and over again. When reading this book, we see the phenomena clearly that we’ve so long struggled to express.

Of course, all of this raises more questions than it answers. Re-reading On Death and Dying highlights certain tensions inherent in working with dying patients, tensions that are clearly reflected in ethics case consultation. Ironically, the problem of clinical bioethics is how to keep the tensions alive rather than to resolve them. Routine encounters with patients will be enhanced though experience and knowledge of general ways that patients and their families deal with bad news and come to make end-of-life decisions. But, we must always fight against hiding the patient behind these generalizations and conceptual constructs and thereby failing to hear her voice. Common sense shows us that some deaths seem to go better than others in a variety of ways. However, we must not allow this reality to lead us to imposing our judgments on those who wish to live and die otherwise. How can we be sure to do this? There can be no technique or ideal of not being overcome by your techniques and ideals. For that, we must rely on our ability and willingness to surface our own humanness each day.

The person of Elisabeth Kubler-Ross, however, gives pause as we counsel openness and humanness. The direction she took soon after On Death and Dying is something of an embarrassment to professionals and probably has led to less recognition of her influence in bioethics than she is due. Her preoccupation with out-of-body, near-death experiences, channeling spirits, seeing “fairies,” reincarnation and her insistence on proving that death does not exist, are just too much for most of us (cf. The Wheel of Life 1997, pp. 171–178, 188–193, 196–197, 201–208). I have struggled to articulate what exactly is the nature of this discomfort with her.

I think that as I ponder the elements of Kubler-Ross’s spiritualism, I am mainly afraid. I’m afraid that maybe looking so honestly at dying is impossible to sustain. Maybe death is too terrible, too wondrous, and too mysterious for one to dwell near it without either constructing elaborate defenses or being somehow consumed by it. Perhaps one must give in to living behind the illusion of technique or find oneself entrapped in far more peculiar defenses. I doubt this must be the case. But, it does suggest that we clinical ethicists must ask questions about how we can support ourselves and each other emotionally throughout careers in which we look upon death so frequently. How can we foster our emotional, spiritual, and moral development so that we may better perform our service? How can we be or become the kind of persons who look at the matters on which we are consulted and let them show themselves as what they are, however they present themselves? Perhaps this is the future agenda of clinical bioethics, an agenda that is suggested by the excesses as well as the insights of Elisabeth Kubler-Ross.

REFERENCES
Andre, J. (2002). Bioethics as Practice Chapel Hill: University of North Carolina Press.

Cohen, C., et al (2001). Walking a fine line: Physician inquiries in patients’ religious and spiritual beliefs. Hastings Center Report 31 5: 29–39[PUBMED][INFOTRIEVE].

Helft, P. R., M. Siegler, and J. Lantos (2000). The rise and fall of the futility movement. New England Journal of Medicine 343 4: 293–296[PUBMED][INFOTRIEVE][CROSSREF].

Kubler-Ross, E. (1969). On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy, and Their Own Families New York: Macmillan.

Kubler-Ross, E. (1997). The Wheel of Life: A Memoir of Living and Dying New York: Touchstone (Simon & Schuster).

Kuczewski, M. G. (1997). Fragmentation and Consensus: Communitarian and Casuist Bioethics Washington, DC: Georgetown University Press.

Lo, B., et al (2002). Discussing religious and spiritual issues at the end of life. Journal of the American Medical Association 287 6: 749–754[PUBMED][INFOTRIEVE][CROSSREF].

Lynn, J., et al (2000). Rethinking Fundamental Assumptions: SUPPORT’s Implications for Future Reform (Study to Understand Prognoses and Preferences and Risks of Treatment). Journal of the American Geriatrics Society 48 5 Suppl: S214–S221[PUBMED][INFOTRIEVE].

Schneiderman, L. J., N. S. Jecker, and A. R. Jonsen (1990). Medical futility: Its meaning and ethical implications. Annals of Internal Medicine 112 12: 949–954[PUBMED][INFOTRIEVE].

Youngner, S. J. (1988). Who Defines Futility?. Journal of the American Medical Association 260: 2094–2095[PUBMED][INFOTRIEVE][CROSSREF].