Lost in the Five Stages of Grief

Early in the fifteenth century, an anonymous text on how to face death appeared. Titled Speculum artis bene moriendi (The Mirror of the Art of Dying Well), it counseled readers to remember that dying had a good side, that it was not to be feared, and that the good Christian should resist a series of spiritual temptations in the face of death. One must not give in to despair, a lack of faith, impatience, or pride, and to remain overly attached to family and earthly possessions. Avoiding these snares, one could achieve a “good death,” being right with God and facing one’s death with piety and equanimity. The book was immediately popular, and the idea became even more widespread after a simplified version, consisting primarily of woodcuts displaying both the snares and the correct attitude toward death, was released. By the end of the century, the ars moriendi genre would come to include a number of similar treatises, including the anonymous Crafte and Knowledge For to Dye Well (ca. 1490) as well as William Caxton’s The Arte and Crafte to Know Well to Dye (1490)—all of which focused on the goal of helping readers understand death as part of the natural working of God’s will.

Elisabeth Kübler-Ross’s landmark book, On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy, and Their Own Families, rejects any such Christian framework. “Once the patient dies,” she writes at one point, “I find it cruel and inappropriate to speak of the love of God. Whenever we lose someone, especially when we have had little if any time to prepare ourselves, we are enraged, angry, in despair; we should be allowed to express these feelings.” The denial of emotions in favor of piety, Kübler-Ross believed, was anathema to end-of-life care, particularly in the twentieth century. But the book, which was published in 1969 and became an immediate cultural phenomenon, nonetheless tried to take the messy reality out of death, regularizing it into a series of five stages: denial, anger, bargaining, depression, and acceptance.

An ars moriendi for a secular world, it flattened the uncertainties, ambiguities, and trauma of death into a stable narrative, urging the dying to adopt the sanguine composure of one facing mortality in a mature, accepting light. While pointing out that we don’t do enough to listen to the dying and prioritize their needs, Kübler-Ross nonetheless subtly admonished those who might rage, rage against the dying of the light—arguing instead that there was one “right” way to face death, and that the job of the living was to shepherd the terminally ill toward this “good death.”

A Swiss-born psychiatrist, Kübler-Ross first gave a lecture on death and dying in the fall of 1964, focusing on how American doctors were often skittish around their terminally ill patients, and how they fell short of meeting their needs. Shortly thereafter, now working as an assistant professor at the University of Chicago, she was approached by four students of the Chicago Theological Seminary, who wanted to better understand the concerns of the dying. Deciding that the best way to answer this question was by “asking terminally ill patients to be our teachers,” Kübler-Ross and the four students began interviewing patients. Though at first Kübler-Ross encountered resistance from some hospital staff, the project soon grew, and she began gathering up the various interviews as she drew conclusions as to how best to help the dying.

The book that resulted, On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families, came out in 1969, and was accompanied shortly thereafter by a profile of Kübler-Ross in Life magazine. Almost overnight, she became a sensation, and her five stages of dying became an almost instant cliché. The hospital was so overwhelmed by the press and publicity that they barred her from further field work, but by then it hardly mattered; she had found her calling.

Much like Jessica Mitford’s The American Way of Death (published six years earlier), the book peeled back the curtain on an utterly failing system of terminal care. Kübler-Ross was no muckraker, nor really a journalist at all, but her work laid bare the way in which the American health care system consistently failed the dying. In one revealing interview with nurses working a terminally ill ward, one nurse confessed to Kübler-Ross that she resented “the waste of time spent on these patients” who were going to die anyway; another expressed bitterness when a patient “died on me while other members of the family were present.” What became clear to Kübler-Ross was the degree to which some health care workers seemed to take death as a personal affront; others, she saw, were so afraid of their own mortality that they could not bear to be around the dying. “The more we are making advancements in science,” she writes in the opening chapter, “the more we seem to fear and deny the reality of death.”

On Death and Dying helped usher in a revolution by insisting that the dying not only still had their humanity, but also had something to offer to the living. Physicians, Kübler-Ross argues, “learn to prolong life but get little training or discussion on the definition of ‘life.’” By turning over the stage to the patients themselves, and foregrounding their concerns, emotions, and needs, she tried to push back against a trend she saw in postwar America, that, in her words, “dying nowadays” had become “more gruesome in many ways, namely, more lonely, mechanical, and dehumanized.”

“If this book serves no other purpose,” she writes, “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.” The singular impact that On Death and Dying had was to remind us that when a terminally ill individual is expressing any kind of emotion, what’s at the root of it is always death. If they were angry, they were angry at death; if they were depressed, it was because they were dying. If they suddenly stopped making any kind of rational sense, this, too, had a root cause. America’s denial of death led to frustration among families and health care workers who couldn’t identify where these emotions were coming from. If you wanted to help the terminally ill, you first had to listen to them—and listen bravely, without fear, without shying away from the undeniable fact of death.

Kübler-Ross’s legacy has been mixed; her work has been subject to scathing criticisms through the years, and by the end of her life, her defenders seem to have been reduced to mostly people who knew her in life. The sense one gets is that most of her conclusions—from a clinical, psychiatric, or sociological position—were inaccurate, but she was such a captivating and spellbinding presence that people listened to her. This may explain why her later years were mired in scandal—she involved herself in a cult-like retreat where she advanced the belief that death did not exist, which led to a sex scandal.

Released from clinical work and now a household name, Kübler-Ross became more famous touring the country giving seminars on death and dying. Eventually, she began to shift her message: She broadened out from death to grief, going so far as to copyright the phrase “The Five Stages of Grief.” But soon she began to speak past mortality and mourning altogether. In the early 1970s, she claimed an out-of-body experience helped her overcome a serious illness, and from there moved on to more esoteric philosophies. “There is no death,” she told audiences; only “life after life.” She began to embrace Spiritualism, claiming she had communed with spirits of the dead with names like “Mario,” “Anka,” “Salem,” and “Willie.” She spoke of reincarnation, and told listeners she’d lived during the time of Jesus, when she’d been named Isabel.

Then in 1976, she met former aircraft worker Jay Barham, who’d reinvented himself as the prophet of the Church of the Facet of Divinity; the two of them founded a spiritual foundation north of San Diego (Shanit Niyala, supposedly Sanskrit for “Home of Peace”), mimicking other self-help retreats of the era like Esalen, with screaming therapy and other practices meant to give participants “permission” to let go of fear, anxiety, and other negative emotions. Additionally, they furthered Kübler-Ross’s Spiritualist beliefs, regularly conducting seances in attempts to contact the dead.

Eventually, several women accused Barham of siphoning them off individually to private rooms, where he would appear to them, unclothed, posing as an “afterlife entity” who encouraged them to have sex with him. Widely reported at the time, nothing appears to have come of the allegations—but they badly tarnished Kübler-Ross’s reputation, and the episode overshadowed her later years, even as she strove to return to her earlier work by focusing on AIDS patients. A documentary produced in 2002 on her final years, Facing Death, revealed a woman largely alone and forgotten.

Reading On Death and Dying now is odd; even in a fancy 50th Anniversary Edition, it seems rooted in some distant past, and the lessons it offers appear either anachronistic or so thoroughly woven into culture that they’ve become redundant. Kübler-Ross was not alone in bringing attention to how shabbily we treated our dying, but it’s certainly a testament to the success of her work that death and dying care is a regular part of medical school training, that hospice care has been greatly destigmatized, that “Death Doula” is now a recognized occupation, and that all manner of organizations, formal and informal, exist to encourage us to rethink how we face death (including Caitlin Doughty’s The Order of the Good Death, with which I’ve been affiliated in the past).

“Her timing was spot-on,” Ann Neumann, author of The Good Death: An Exploration of Dying in America, told me when I began to revisit the book. Kübler-Ross was not the only person advocating for better end-of-life care at the time; Cicely Saunders was already at work developing what would be the first hospice in London. But as Neumann notes, Kübler-Ross “was really savvy: She was vocal, she was succinct. She put together the equivalent of a jingle for how to get through death, dying and grief, and it stuck. It just resonated with many people, I think, in many cases because of its simplicity. It’s a little formula, and it made it easier to talk about.”

What’s curious about this widespread adoption of Kübler-Ross’s work is that it was not initially meant for most of us. As the subtitle suggests, this was a work written for health professionals, not the general public. Though there’s some concession made to the families of the terminally ill, the invocation of “we” and “us” throughout the book reminds a reader now that this was meant as an industry guidebook. Its ubiquitous spread, as well as the almost immediate translation of the five stages of death to “The Five Stages of Grief™️,” speaks to an undeniable hunger in the American public to talk about death, and a need to bring its hidden reality out into the open.

But what’s most striking about the original book itself is how little argument is given for the five-stage structure—its central, marquee innovation. After an introductory chapter on our cultural denial of death, and a chapter that largely details the genesis of Kübler-Ross’s project, she launches into the five stages without any kind of fanfare. They are presented as separate chapters, without any kind of explanation of how Kübler-Ross reached that number or that order. And though trained as a professional psychiatrist, the language here is all pop psychology; there is no research cited, no studies carried out. The conclusions here all rest on anecdotal evidence, and on the force of Kübler-Ross’s convictions. (What’s also striking is how much of the book is simply not in Kübler-Ross’s own words; much of it is direct transcriptions of interviews with patients, which are presented as neatly self-evident.)

In reading through these interviews, threads start to emerge. Many of the recorded emotions—anger, depression, etc.—are less about death itself and motivated instead by a frustration with poor care and the failures of the healthcare industry. In the opening chapter on the depression stage, Kübler-Ross sums up many of the triggers for this emotion, including the reality that, with “extensive treatment and hospitalization, financial burdens are added; little luxuries at first and necessities later on may not be afforded anymore.” In discussing the additional difficulties that families face, she writes of how the wife of a terminally sick patient “may feel threatened by the loss of security and the end of her dependence on her husband.… She may suddenly have to get involved in business matters and their financial affairs, which she previously avoided doing.” The reality that end-of-life care often destroys a family’s financial resources with minimal benefit to the patient themself is cited as a recurrent stressor, causing a mix of both anger and depression.

But these emotions, On Death and Dying suggests, are simply stages to work through. The book recasts failures in the American health care system as part of a spiritual journey leading to maturation and acceptance. Rather than imagine a better system of care where Americans didn’t have to worry about money and could focus on the emotional needs of their dying family members, Kübler-Ross imagines a world in which structural failures are opportunities for personal growth.

And although the book’s structure suggestions that one should progress neatly through the five stages, Kübler-Ross constantly undermines this notion, pointing to the ways in which there is no structure, no progression here at all. Some of the patients she chronicles skipped various stages; others remained in denial throughout their entire illness. Looking for any kind of certainty or rigor in the book’s writing, one finds again and again caveats, reversals, and contradiction:

Denial was used by most of our patients and lasted from a few seconds to many months as some of our included interview examples reveal. This denial is never a total denial. After the denial, anger and rage predominated. It expressed itself in a multitude of ways as an envy of those who were able to live and function. This anger was partially justified and enforced by the reactions of staff and family, at times almost irrational and a repetition of earlier experiences, as the example of Sister I. shows. When the environment was able to tolerate this anger without taking it personally, the patient was greatly helped in reaching a stage of temporary bargaining followed by depression, which is a stepping-stone towards final acceptance. The following diagram demonstrates how these stages do not replace each other but can exist next to each other and overlap at times.

The diagram, reproduced on the following page of the book, is barely legible.

This attempt to have it both ways may explain why some critics struggled to combat the book’s influence in the wake of its success, accusing not Kübler-Ross but the pop consensus of a willful misreading. In a critique from 1979, medical ethics professor Larry R. Churchill argued that the fault “lies not so much with Kubler-Ross herself as it does with those of us who have taken her metaphors literally and ossified her ‘stages’ into lock-step movements.”

But for all her caveats, this impression of orderliness was Kübler-Ross’s intention and design, and it’s the framework that she gave us. And it’s one that reduces the messiness of death and dying to a stable, life-affirming narrative. As Churchill accurately notes, the stages “have, in fact, tended to professionalize the process of dying, to put dying, like other critical life-junctures, in the hands of an expert or professional who, using scientific tools, studies, describes, and inevitably prescribes for us.” This, he argues, benefits primarily those left behind: “It is the living who need control and manageability, and who are prone to categorize the experience of dying by applying Kubler-Ross’ stages rigidly and dogmatically.” Acceptance, after all, is easiest and most comforting for those left behind—the goal of getting patients through these five stages seems to be at least in part to make it easier for families and caregivers, to minimize their guilt or confusion. We love Kübler-Ross’s five stages because they make things simpler for us, and if the dying don’t make it to acceptance, that’s ultimately not the fault of their caregivers or a failing health care system; it’s theirs alone. As Neumann told me, “I think the cookie-cutter five stages can admonish people for not grieving properly, and that’s just not acceptable. That’s not the way end of life care tools should be used.”

The Good Death movement, for all its good intentions, remains a kind of idealized version of death where we have the time and space to confront the reality of mortality and the emotions that ensue. But the pandemic that began in 2020 and is still ongoing is just one of the many obvious reminders that most of us do not have the time or luxury of working through five stages. For the past four years, people have died suddenly, they have died on Zoom, they have died alone. They have died angry, depressed, and in denial. They are not dying neatly, with the kind of acceptance that makes those left behind feel good and reassured. We have come a long way since the 1960s, getting better at helping the terminally ill get what they actually need and want, and not just what we think is good for them. But death is still a brutal, messy business.

Even Kübler-Ross, who built a career around acceptance, could not accept this messiness by the end. Late in her life, she flatly stated, “I know beyond a shadow of a doubt that there is no death the way we understood it. The body dies, but not the soul.” If you’ve ever been with someone who’s dying, you know flatly that this is bullshit. Death is real, it’s hard, and it’s unbearable even under the absolute best of circumstances. Even a Good Death is an awful death, and we do neither the dying nor the grieving any favors by pretending otherwise. At one point in her life, Elisabeth Kübler-Ross had claimed to know this.