On Death and Dying

Dr. Elisabeth Kübler-Ross and the Five Stages of Grief

Excerpt From: “On Death and Dying” by Dr. Elisabeth Kübler-Ross

— Courtesy of Dr. Ira Byock – IraByock.org

 

“In the post–World War II era, as with every other aspect of social life, optimism and defiance pervaded America’s orientation to illness. Having endured the Great Depression, two world wars, and the Korean War, invincibility and perseverance were parts of the can-do American persona. A hopeful attitude in the face of adversity seemed intrinsically virtuous, part of the American way.

And there were good reasons to be optimistic. Startling breakthroughs in physics, chemistry, engineering, and—to most ­people most important—medicine were occurring almost daily. Cures for hitherto lethal conditions such as pneumonia, sepsis, kidney failure, and severe trauma had become commonplace. Disease was increasingly seen as a problem to be solved. The sense was that medical science might soon be able to arrest aging and (subconsciously at least) possibly conquer death itself.

In this culture, the best doctors were the ones who could always find another treatment to forestall death. In the 1950s and 1960s doctors rarely admitted when treatments weren’t working and commonly failed to tell patients when further treatments would do more harm than good. Physician culture epitomized the never-say-die stance, but doctors were not the only ones to maintain this pretense: sick people and their families all too readily colluded to avoid talking about dying.

It was common at the time for doctors to woefully undertreat seriously ill patients’ pain to the (often needlessly) bitter end. This was only partly due to the fact that doctors were poorly trained in the management of pain and other symptoms. It was also due to the conspiratorial, sunny pretense that doctors, patients, and their families maintained. Admitting that a person’s pain was getting worse might mean admitting that his or her disease was getting worse.

The medical culture of the era was highly authoritarian. A patient’s values, preferences, and priorities carried little weight. Doctors informed patients of the decisions they had made and patients accepted those decisions. In addition to the death-­defying prowess and prestige that distinguished the most successful doctors, peer pressure contributed to widespread neglect of people’s pain. While during the last hours of life most doctors would give enough morphine to keep patients from dying in agony, fears of raising eyebrows among colleagues kept many from giving their dying patients enough medication to be as comfortable as possible for the months they had left to live.

Elisabeth Kübler-Ross’s On Death and Dying challenged the authoritarian decorum and puritanism of the day. In a period in which medical professionals spoke of advanced illness only in euphemisms or oblique whispered comments, here was a doctor who actually talked with people about their illness and, more radically still, carefully listened to what they had to say.

Kübler-Ross and this book captured the nation’s attention and reverberated through the medical and general cultures. The very act of listening delivered illness and dying from the realm of disease and the restricted province of doctors to the realm of lived experience and the personal domain of individuals. When I first read On Death and Dying as a college student aiming toward a career in medicine, I was struck by the interview transcripts that revealed the respect that was evident in Kübler-Ross’s listening and her unpretentious friendliness toward patients.

On Death and Dying sparked changes to prevailing assumptions and expectations that transformed clinical practice within very few years. In reasserting people’s personal sovereignty over illness and dying, Kübler-Ross’s book brought about a radical restructuring of patients’ relationships with their doctors and other clinicians. Suddenly, how people died mattered. No longer were dying patients relegated to hospital rooms at the far end of the hall. On Death and Dying is rightly credited with giving rise to the hospice movement—and, by extension, the new specialty of hospice and palliative medicine—but the “changes it set in place have pervaded nearly every specialty of medicine and nursing practice. For instance, by the late 1990s pain would become a “fifth vital sign” to be assessed in hospitals every time a patient’s temperature, pulse, blood pressure, and respirations were measured.

On Death and Dying also had profound impact on human research. No longer could experiences of “the dying” be objectified, nor could the study of dying be relegated to component histological, biochemical, physiological, or psychological pathologies. Instead, Elisabeth Kübler-Ross’s groundbreaking work opened up entirely new fields of inquiry into the care and subjective experiences of seriously ill people. The resulting interest in and validity of both quantitative and qualitative research on dying and end-of-life care accelerated advances within psychology and psychiatry, geriatrics, palliative medicine, clinical ethics, and anthropology.

Although she was steeped in the psychiatric theory of her day and proud of it, Elisabeth Kübler-Ross was not bound by Freudian or Jungian formulations to her patients’ experiences. Instead she let “the voices and perspectives of the people she interviewed predominate. Her interviews allowed people to explain in their own words how they struggled to live with and make sense of an incurable condition. The psychodynamics that most interested Kübler-Ross were those between the person who was now incurably ill and the person who until now had been well.

In On Death and Dying Kübler-Ross famously delineated the “stages” of denial and isolation, anger, bargaining, depression, and acceptance to meticulously describe the emotional states seriously ill people commonly experienced and the adaptive mechanisms they used to make sense of and live with incurable conditions.

Popularized as Kübler-Ross’s “stages of dying,” they have been criticized for suggesting a formulaic progression of phases through the dying process. Anyone reading the book will recognize this characterization as a simplistic and inaccurate representation of what she described. In On Death and Dying, Kübler-Ross made it clear that these emotional states and adaptive mechanisms occur in a variety of “patterns. She relates interviews and stories of individuals who experienced a natural—though never easy—progression from initial denial and isolation through anger, bargaining, and depression and achieved a sense of acceptance of their situations, or at least acquiescence to it. She also relates the experiences of others in whom movement from one to another stage stalled in denial or anger. As the accounts of people we meet within On Death and Dying powerfully illustrate, it is common—and normal—for ill people to wrestle in ongoing ways with the discomforts, disabilities, fatigue, and physical dependence of illness and the impact of death’s approach. We learn that some people move through denial or anger only to have these emotional states later recur as illness advances. Emotional life is complex, and the interviews in On Death and Dying reveal that sometimes seemingly incompatible states, such as denial and acceptance, can coexist.

As important as its impacts on health care and research have been, the cultural influence of On Death and Dying extends to the fundamental ways “in which Americans have come to understand illness and dying.

It is worth noting how Kübler-Ross published the findings within On Death and Dying. Although the research certainly warranted the attention of a medical audience, she chose to write for the general public. She may well have understood that “the medium is the message,” as Marshall McLuhan, another visionary, asserted in his 1964 book Understanding Media: The Extensions of Man.

I do not know how fully Kübler-Ross intended On Death and Dying to spark a cultural movement to improve end-of-life care and restore illness and dying to the proper dominion of people’s personal lives. But that is what it did. Indeed, Life magazine at the time referred to the book as “A profound lesson for the living.” Exactly.

Timeless themes within the uniquely human experience of ­illness—knowing that one’s life will one day end—make On Death and Dying relevant to readers today. As a physician, I am struck by how far we have come, and yet how far we still have to go to achieve truly person-centered care. I am reminded “to listen and approach patients who are seriously ill in a spirit of fellowship and service, for they are on a journey that none of us would choose but all of us must eventually travel.

In rereading On Death and Dying as a professional, I once again felt its impact on a personal level—as an individual who is also a son, brother, husband, father, and grandfather.

The people we are introduced to in On Death and Dying remind us of our own mortality, but they also show us that how people die is not predetermined and can be made better or worse by the choices they make and the quality of care they receive. We see some of the myriad ways the manner in which people are cared for and die affects those who love them. After all these years, On Death and Dying remains a call to action to listen to the people who need our help and respond with all the knowledge and skill we can bring to bear—always with humility, fellowship, and compassion.

During the socially tumultuous mid-twentieth century, one diminutive Swiss-American psychiatrist had the temerity to give voice to people facing the “end of life. Elisabeth Kübler-Ross held up a mirror to Americans, reflecting their attitudes, assumptions, and behaviors toward people living with a terminal illness. People didn’t like what they saw. Through the medium of On Death and Dying, Elisabeth Kübler-Ross added how we die to the agenda of cultural revolutions taking place in realms of the environment, social rights, and health care.

Things would never be the same.”

And we are all better for it.

 

Ira Byock, M.D.
Professor of Medicine
Geisel School of Medicine at Dartmouth
August 16, 2013