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Who Is Elisabeth Kübler-Ross?

Americans don’t like talking about dying because it conjures up so many bad images. So they say things like Aunt Dorothy passed, Mrs Witowsky has gone to meet her maker, and Uncle Willie was called to glory. Type <euphemisms for death> in your search box and you’ll find resting in peace, went to a better place, shuffled off the mortal coil, and more than 100 others.

You’ll also find less sensitive ways of talking about death. Who hasn’t heard of someone going belly up, buying the farm, taking a dirt nap, kicking the bucket, and pushing up daises? Who doesn’t know that Luca Brasi is sleeping with the fishes?

Dying is more lonely, mechanical, and dehumanized than ever

Decreased physical abilities and limitations are awful enough for terminally ill patients to live with day to day. Add in the anguish of loneliness and isolation, and no wonder we think that death is a scary thing.

And then along came Elisabeth Kübler-Ross

She came from Switzerland, where death was considered as normal a part of living as birth. Swiss people died in their own beds in the familiar surroundings of home where they could be comforted by being with their families and friends.

Kübler-Ross specialized in working with terminally ill patients who were typically neglected and abused

She knew from her work in Swiss hospitals that most patients wanted to review the lives they had lived and talk about their soon-to-come death, so she was horrified when she came to the U.S. and saw how badly “hopeless patients” were treated. As illnesses progressed, patients required more and more machinery to keep them alive, even when everyone knew they would never gain consciousness again.

That’s when she decided to develop a program that focused on giving individual care and attention to each patient

No terminally ill patients in the hospital where she worked had ever met a doctor who actually talked with people about their illness

No patient had ever met a doctor who listened carefully to what they had to say, either, but Elisabeth Kübler-Ross did. “We would observe critically ill patients, study their responses and needs, evaluate the reactions of the people around them, and get as close to the dying as they would allow us,” she said. Kübler-Ross was eager to find out everything that the dying wanted to tell us: what kinds of fears, fantasies, turmoil, hopes, and expectations they had.

By conducting thousand of interviews with terminally ill patients, Kübler-Ross was able to catalog and describe the emotional states seriously ill people commonly experienced, as well as the adaptive mechanisms they used to carry on living with incurable conditions.

In 1963, Kübler-Ross began conducting weekly seminars at the University of Chicago’s Pritzker School of Medicine. Her workshops featured live interviews with terminally ill patients who talked openly about their most intimate dying experiences.

In 1969, Elisabeth Kübler-Ross wrote her first book

On Death and Dying was subtitled What The Dying Have to Teach Doctors, Nurses, Clergy, and Their Own Families. When it was published, death was a taboo subject and discussing it was considered morbid. Patients died alone in hospitals, physicians ignored them, and adequate pain medication was underused. The book made more people aware of these practices and pressed for more humane treatment of the dying. You can read more at the National Institute of Health’s National Library of Medicine

On Death and Dying challenged the authoritative ways of the day

Kübler-Ross’s more humane treatment of the dying had a profound effect on how hospitals, care facilities, and medical staffs interacted with dying patients. When Kübler-Ross started appearing on magazine covers and in news stories, how people died began to matter. 

Elisabeth Kübler-Ross is best known for describing people’s psychological reactions when death is near 

She chose the names for her five stages to create a language simple enough for people to understand and remember. The BBC said she didn’t care if people want to apply different models, or theories, or terminology. She just wanted to begin the conversation. Millions of us are familiar with those five stages, even if we only learned them by watching Bob Fosse’s All That Jazz. Here’s a short scene from the film.

  • Denial: Patients believe there must be some mistake. This can’t me happening to me. The doctors have made a terrible mistake.
  • Anger: At some point, patients are forced to accept the fact of their impending death. They become frustrated and are difficult to deal with because they’re angry at everyone and everything.
  • Bargaining: This is where patients swear to live a reformed lifestyle if they are spared. From her own notes: “We have been impressed by the number of patients who promise ‘a life dedicated to God’ or ‘a life in service of the church’ in exchange for some additional time.”
  • Depression: The reality of their death comes crashing down on them. No longer in denial, no longer angry, no longer thinking there is any way out, patients withdraw into themselves. 
  • Acceptance. Not everyone makes it to acceptance, but those who do have come to regard death as normal and inevitable.

This drawing helps people visualize how Kübler-Ross thought of her stages of grief

Kübler-Ross never meant people complete one stage and go to the next

She never said that grief proceeds in a linear and predictable fashion, the way most assume it to be. Writing in Psychology Today, David B. Feldman says “the actual grieving process looks a lot less like a neat set of stages and a lot more like a roller coaster of emotions.” 

Kübler-Ross thought it was important for people to understand On Death and Dying was never meant to be a textbook on how to manage dying patients

She also cautioned readers that this book was never intended be a complete study of the psychology of death and the dying. “It was simply an account of how to treat patients by focusing on them as human beings, including them in dialogues and decisions, and learning from their first-hand accounts the strengths and weaknesses of how hospitals deal with dying patients.”

Too many people saw the five stages of dying as one following the other, just like the Monday, Tuesday, Wednesday, and so on

The reality Kübler-Ross wanted people to understand is that dying people may experience one or all of these stages, and in every possible order. Later in life she said she regretted that her stages had been oversimplified and misunderstood because the idea that there are five fixed, linear stages distracts many from learning the real lessons. 

Her five stages were meant to be a loose framework, not a ladder and not a recipe

Few know that those five were just the chapter headings. There are an additional dozen stages, including hope.

Psychology Today also says that Kübler-Ross did not develop these stages to explain what people go through when they lose a family member or a loved one. She developed them to describe the process patients go through as they come to terms with their terminal illnesses. Only later were these stages applied to grieving friends and family members because they seemed to undergo the same processes after losing loved ones.

You can find fault with her work, and many have, but keep these things in mind when you judge her: 

  • She personally interviewed thousands of terminally ill patients.
  • She transformed the way people look at the terminally ill by leading hospice, palliative care, and bioethics movements. 
  • Her work had a profound effect on half a dozen scientific and academic fields, 
  • She taught courses in death and dying to 125,000 students in colleges, seminaries, medical schools, hospitals, and social-work institutions.
  • Her program worked so well that 94% of her patients showed significant improvement in their mental health. 

Her influence on working through stages of grief is alive in new ways

The Death-Positive Movement

Since 2011, the “death positive movement” has been working to encourage people to talk openly about death and dying without using euphemisms. The goal is to accept the inevitability of death so we can prepare for it.

Death Cafes

These are the spookily-named places where strangers and friends gather to discuss death and dying. The idea is to increase awareness of death and help people make the most of their lives. It’s actually a not-for profit franchise that is run by volunteers. The first Death Cafe opened in London in 2011. Their website deathcafe.com says “We have offered 17,190 Death Cafes in 86 countries.”

Bonus

Are palliative care and hospice the same thing?

Joey Keillor, writing for Aging and Health, says both aim to improve the quality of life for dying people and their families by reducing or eliminating pain, fatigue, and depression as well as providing comfort and support to individuals, caregivers, and families. 

The big difference between the two is that hospice care stops curative treatments to focus on comfort and quality of life for those who don’t have long to live. When a cure is no longer possible, it is important that patients are able to spend meaningful time with the people who are important to them by shifting the responsibility for hands-on caregiving to the hospice team. Palliative care focuses in those things, too, while continuing medical care for those with serious illnesses.

Double Bonus

Two of TIME Magazine’s Top 10 Comas

Karen Ann Quinlan fell into a coma after a night out with sedatives and alcohol. Doctors officially diagnosed her as being in “a permanent vegetative state,” defined as “a persistent condition in which the patient appears to be awake but does not respond meaningfully to the outside world.” Quinlan’s parents wanted to end their daughter’s suffering by disconnecting her life-support systems. TIME magazine said the court ruled that the state had no right forcing her to “endure the unendurable.” The tubes were disconnected and she lived another 10 years.

Terri Schiavo collapsed from heart failure and fell into a coma. Later she entered “a permanent vegetative state,” so severely brain-damaged that she lost virtually all of her cognitive abilities. Schiavo was kept alive on a feeding tube for 15 years. Only after her case reached federal court were doctors allowed to remove her feeding tube. She died 13 days later. Her story, The Terri Schizvo Saga The Making of a Tragedy and Lessons Learned is a good one. Here is the first paragraph:

“The recent case of Terri Schiavo has been an important medical, legal, and ethical controversy. However, much of the public discussion of the tragedy has been based on inaccurate information regarding the facts of the case and the actual legal and ethical issues involved. This article reviews the pertinent aspects of the case and the ethical and legal questions raised and highlights the lessons we should learn from this unique story.”

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