Elisabeth Kübler-Ross: A life’s work on grief, death and dying   

by Mary Stefanazzi

The aim of this paper is to briefly place the work of Dr. Elisabeth Kübler-Ross (1926-2004) on grief and death and dying in context. While her name is synonymous with grief, Elisabeth’s work extended to other areas although her thoughts on these topics are less well known. She spoke regularly about unconditional love, the importance of dealing with our unfinished business, the symbolic language sometimes used by dying people, the four quadrants of the human being: the physical, intellectual, 

emotional and spiritual, and AIDS. Many of her talks are available on YouTube for those who did not have the privilege of hearing her in person – there are some links at the end of this article.

Elisabeth was a Swiss psychiatrist who worked as a country doctor in her beloved Switzerland before moving to America where she lived for most of her life. The publication of her pioneering work On Death and Dying (1969) resulted in her name becoming synonymous with the stages of grief. Her final posthumously published work On Grief and Grieving (2005:7) acknowledges that the stages “have been very misunderstood over the past three decades. They were never meant to help tuck messy emotions into neat packages.” The opening chapter clarifies the position thus:

The five stages (of grief) – denial, anger, bargaining, depression and acceptance – are part of a framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or goes in a prescribed order.

(Kübler-Ross & Kessler, 2005:7)

It appears that current trends favour discrediting and disregarding Elisabeth’s important work. The aim in this short article is to address obvious errors and not to speculate on possible underlying motives for this trend, although that may make for an interesting article at some other time. This article intends to provide interested readers with a context to engage and reflect on Elisabeth’s work and the pertinent questions it raises, on the basis that good scholarship behoves us to represent a body of work as accurately as possible and to face difficult ethical dilemmas when they arise. It is important to state the obvious at the outset: grief; however we understand it, is a natural part of the human condition.

The life and living lady

Whenever introduced as the ‘death and dying lady,’ Elisabeth would promptly correct the master of ceremonies to the effect that she was in fact the ‘life and living lady.’ (Nikkel, 2021) She argued that until we come to terms with our mortality as human beings we cannot truly live. Her life’s work evolved around this principle, helping people to come to terms with mortality in the context of a life to be lived till the very last breath. Her public talks, notable for her Swiss accent, her relaxed style and natural storytelling ability, left the listener with the impression that she was addressing them personally. The intention throughout this article in using the informal address is to reflect Elisabeth’s characteristic informal personal style.

In the early 1960’s Elisabeth was a member of staff and faculty of the University of Chicago’s Billings hospital. When approached for help by students who wanted to study the human challenge of impending death, she thought that the best sources would be people in that predicament and she set about looking for people in the hospital who would be prepared to talk about their experience to students. She encountered difficulties with colleagues from the outset for even considering such a course of action. Yet patients welcomed the opportunity to be of assistance. Her book On Death and Dying (1969) is based on the outcome of these conversations/seminars. The format was that Elisabeth would have a conversation with the patient and students would listen from the dark side of a one way glass partition. Many were deeply moved by what they heard.

When the book was published in 1969, 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 brought these practices to the fore and pressed for more humane treatment of the dying.

(Newman, 2004: 627)

Elisabeth’s work was systemic in that she also took due regard of the people around the dying person and evaluated the support they needed. For example, if a patient needed to express anger as they came to terms with a terminal diagnosis, Elisabeth was able to explain the angry behaviour to relatives who otherwise may have withdrawn support or retaliated when their own anger was triggered. Elisabeth found it absurd that doctors, nurses and others, struggling in the face of intense sadness and depression often tried to cheer the patient up. Her research suggested that anger and depression were indicators that the person was coming to terms with their predicament. (Wainwright, 1969: 41) In this regard her early experience of being the only doctor in a rural community could be said to have served her well. She often spoke about doing her rounds first and how she would leave her dying patients till last so that she would have the time to sit and listen to them.

Kübler-Ross’s work stemmed from the realisation that in her native Switzerland, death, like birth, was considered a normal part of the life cycle. In Switzerland people died at home surrounded by family and friends and they were comfortable until the end of their lives. In contrast in the United States and other countries that placed a premium on high tech medicine, patients lay by the wayside. It was a practice she deplored.

(Newman, 2004: 627)

Elisabeth did not shy away from human suffering. She was a remarkable role model in her capacity to be with the pain of another – an exemplar of the therapeutic power of a genuine patient-physician relationship:

She always displayed deep concerns for her patients’ physical and psychological functioning. Her greatest abilities related to her deep and abiding respect for her patients, her constant display of compassion even for patients she had just met for the first time, and her willingness to help patients with the decisions they would make. These abilities were not routinely displayed by most physicians in the 1960s, an era of medicine when paternalism remained the prevailing and dominant tradition in the doctor-patient relationship.

(Siegler, 2019: 2)

Dr. Kübler-Ross was one of the most influential people in medicine of the twentieth century. She set the stage by insisting upon honest dialogue between the dying person, their family and caregivers, and showing through interviews that it “worked” to allow people to voice their feelings and fears.

(Lyckholm, 2004: 29)

Hospice and Palliative Care programs and services took root and began growing in large measure because of Kübler-Ross’s unrelenting, creative, and effective efforts to re-humanize death and dying in a society and health care system that had come to banish awareness and reference to these fundamental events of personal and human experience, and to sanitize caregivers’ feelings about these events with a veneer of “professionalism.” So the cultural phenomenon that KüblerRoss became was probably more a matter of what she did in her encounters with groups and individuals in lectures and seminars, than of what she wrote.

(Dugan, 2019: 5)

The five stages of grief as set out by Elisabeth were never intended to be prescriptive, yet the argument against her work seems to be based on a prescriptive application. The suggestion is that her stages model is deemed to be “out dated, inaccurate and potentially harmful,” (Gleeson, 2021: 60) on the basis that “Health care professionals continue to ‘prescribe’ stages.” (Stroebe et al, 2017: 455) One would reasonably assume that wherever evidence is found of a prescriptive application, which is contrary to the entire spirit of Elisabeth’s work and teaching, that this would direct the researchers at minimum to investigate the quality and accuracy of the scholarship and teaching responsible for training and supervising such health care professionals. Particularly since we know from testimony predating Stroebe’s work that:

Elisabeth warned her listeners and students at every presentation never to use her “stages” to label and compartmentalize patients and families. That would be another form of dehumanization. “Dying patients don’t have to go through stages, much less in a sequential order,” she repeated endlessly. “Use the stages as an ‘algorithm’ to remind you to listen, and to respect the depths of the patient’s experience…Kübler-Ross says that she framed the “stages” as a lens, a tool to help professional caregivers, motivated by compassion for both: “My goal was to break through the layer of professional denial that prohibited patients from airing their innermost concerns”.

(Dugan, 2004 & 2019: 6-7)

It follows then that one can reasonably assume that Elisabeth would agree with criticism of any stage theories in grief that are prescriptive and do not respect the depths of each person’s personal process. It is interesting that the articles referenced above do not mention the other authors who also presented stage theories:

Many other thoughtful scholars and clinicians in medicine, psychology, and religion in the seventies exposed the prevalence of institutionalized patterns of discomfort, avoidance, and neglect in physicians’ and nurses’ treatment of dying patients. Many even described “stages” or “phases” in patients’ processes of assimilating the harsh realities of terminal diagnoses and significant loss.

[These include the following:] (Bowlby 1961; Hinton 1967; Parkes 1972; Westberg 1979).

(Dugan, 2004 & 2019: 5)

One of these authors, Psychiatrist Colin Murray Parkes, is critical of Elisabeth, who he describes as a “feisty lady” (Parkes, 2013: 95). He accuses her of self-promotion and of failing to acknowledge his work and that of others who were simultaneously working on stage theories which he is confident she knew about. There are references to two articles by Parkes (1964) in the bibliography of Elisabeth’s On Death and Dying. Her work was published in 1969 and his Bereavement: Studies of Grief in Adult Life was not published until 1972. Parkes claims that Elisabeth failed to collaborate with others and he questions her expertise with dying patients saying that:

It does not require great expertise to help most people in this predicament, just a willing ear and a compassionate approach… She died in 2004, still railing against the establishment…She may have been the right person, at the right time, to draw public attention to the needs of people close to death; but teachers would do well to prepare young readers for the fact that her selfpromotion, her reluctance to recognise and to work within the medical system, and her isolation from the many others who were ploughing the same furrow, makes her a poor example to follow. (Parkes, 2013: 94, 96)

Parkes has a considerable body of work on bereavement to his credit. He was made an Officer of the Order of the British Empire by Queen Elizabeth II for his services to bereaved people in June 1996. His openness about his attitude towards his colleague Elisabeth in the article cited is also commendable. It is a pity that these allegations were not made publicly sooner while Elisabeth was alive and well. Had that been the case we may have had a response from her perspective. We know from history of numerous pioneering thinkers who were not held in high regard by the establishment or their colleagues in their time. But one must question how we understand good scholarship. If it were to rest on the people favoured by the academy and established methods one wonders would anything ever change for the better. Whatever each reader thinks about Elisabeth or her work, her capacity to touch the hearts of many in a way that her more esteemed colleagues could not is well documented. That is not to claim she was better in any way. But she undoubtedly used her talents for the greater good. I would argue that such a capacity makes for a fine role model and a good example that anyone would do well to follow. Doing the right thing is not always popular with others.

The final example of Elisabeth’s unpopularity is not a subtle one. In her later years she established a centre to care for children with AIDS at her farm in Head Waters, Virginia. This was not received well in the locality and the place was burned down under suspicious circumstances:

In an interview with ABC News in the United States on 18 December 2001 she (Elisabeth) said that she was most proud of her work with people with AIDS and creating hospice care for prisoners with AIDS. Her last project, building a hospice for children with AIDS in Virginia, ended with a suspicious fire. It also destroyed many unpublished papers. Soon after, she moved to Scottsdale, Arizona, to be close to her son.

(Newman, 2004)

Clinical ethics

The impact of Elisabeth’s work extended beyond the field of death and dying although this is the area her name is synonymous with. A 2004 paper, by a clinical ethicist, republished in 2019 to mark her death, suggests that her influence on the emerging field of clinical ethics in the 1970s was threefold, in that she changed the context, content and process of doing clinical ethics:

She did not “do” clinical ethics, but she fertilized the soil in which it grew into a discipline. By placing the patient’s experience and voice, not merely the patient’s pathology, at the center of attention and concern in the health care universe, Kübler-Ross prepared the soil within which the nascent discipline of clinical ethics took root and grew well beyond her original focus and sphere 

of influence… Kübler-Ross also directed professional caregivers’ attention to the importance of process and interpersonal communications in patient care, concerns at the heart of The American Society for Bioethics and Humanities’ core competencies for ethics consultants.

(Dugan, 2019: 8-9)

Elisabeth Kubler-Ross at her Irish cottage

Critical arguments

When we look more closely at the contemporary arguments against stage theories in grief the difficulty appears to be less with the rationale behind them than with the inappropriate and harmful prescriptive application of those theories. To apply any theory prescriptively to the complexity of the human condition is to indicate a lack of appreciation or understanding of what it means to be a human person. Any therapeutic theory can be misapplied prescriptively. The important distinction, in this particular context of the five stages of grief, is that doing so does not constitute an argument against the theory as the author intended. Misapplication does not invalidate the truth that is found in an appropriate application of any theory. Inappropriate application is akin to quoting a line from the Bible as if it is a text that can be read literally. A human person, like the Bible, needs to be understood in context and in its entirety, from the perspective of the wholeness of the human person, however broken we may appear at any given moment in time. This theoretical concept is more complex to apply in clinical practice.

The ethical dilemma that our consideration here has led us to is that listening to and attempting to understand another person takes time as well as skill and a dedication to working with our personal inner life. Elisabeth was a master at listening, that fact is not in dispute. In later years she ran residential workshops where people could be deeply heard and given all the time they needed to express any unfinished business – the hurt, pain, sadness, shame, guilt, anger, rage and even joy that had accumulated over a lifetime and had not been acknowledged. The contemporary challenge is that time is of the essence in healthcare – general practitioners currently have approximately five minutes per patient, and not everyone has the privilege of access to professional psychotherapy.

Having trained as a facilitator with Elisabeth’s Foundation when she was still alive, I had the privilege of intense involvement with her work, methods and teaching. Since that time (1990/1991) I have found her work to be consistently helpful and useful in clinical practice. I had not realised that Elisabeth’s work was no longer taught to nursing and medical students until I participated in an interdisciplinary seminar on death in 2018 (Casey et al, 2018). Subsequent correspondence with a professor of nursing at Trinity College Dublin clarified that the reasoning is because the academic literature is critical of stage theories in grief (personal communication, January 30, 2018).

A more recent academic search reveals that the Royal College of Surgeons in Ireland currently run MSc postgraduate programmes in loss and bereavement. On enquiring as to their stance on Elisabeth’s work the response was that: “theory has developed and moved on from a time when her very important and pioneering work dominated the field” (personal communication, January 5, 2022). One is left wondering how well informed these esteemed educators are of Elisabeth’s work. It is difficult to even imagine her applying the stages in a prescriptive fashion. The following words clearly articulate the source of potential harm: “perhaps the most prominent danger evident in many who pay fealty to the five stages model is the way they convert a descriptive model to a prescriptive guideline” (Corr, 2011: 716).

It may be useful to state here that fair and accurate analysis and critical engagement of any body of work is to be welcomed. A recent critical analysis of Elisabeth’s work considers whether we should incorporate her work in current teaching and practice. The recommendation is that since the five stage model “is one of those classical concepts that occupies a place of historical importance…” it should be taught “but only if we explicitly attend to its flaws and limitations.” (Corr, 2021: 717) However, the analysis of Elisabeth’s work as set out in the literature bears little resemblance to the applied value of her teaching that I draw on consistently in my clinical work. I have not been successful in uncovering any qualitative studies to support or contradict my experience. The arguments made by Corr have not tempted me to follow his recommendation to: “promptly abandon and never resuscitate the five stages of grief” (Corr, 2021: 724).

The wounded healer

A pertinent underlying principle of Elisabeth’s teaching that has not been mentioned in the literature cited is that of the wounded healer. She was emphatic that you have no business being with another person’s pain unless you face your own pain - unfinished business - was the term she used. To unpack this aspect of her work and to place it in the contemporary context of how academic theory and personal process might be facilitated is beyond the present scope and would require a separate article.

Conclusion

If we consider the stages as set out by Elisabeth, (denial, anger, bargaining, depression, acceptance) as principles or as a working hypothesis we may find them useful. The word ‘death’ by any standard is an efficient word to describe the end of life or the time when something dies. It is interesting, if not somewhat concerning, to note that the word death has almost completely disappeared from public discourse. News reports speak of passing over, passing away and moving on. One is left wondering where the person in question has passed on to. Might this be evidence of some sort of collective denial about death? I think Elisabeth would smile to herself and maybe even say ‘I rest my case!’

Mary Stefanazzi, PhD, Trained as a facilitator with the Elisabeth Kübler-Ross Foundation and works in private practice as an accredited psychotherapist, clinical supervisor, spiritual director, author and ethics consultant. www.marystefanazzi.ie.

Online resources about Elizabeth Kübler-Ross

Elisabeth Kübler-Ross. Archive acquired by Stanford University in 2019. Details of the collection can be viewed at Stanford University, Department of Special Collections. See: https://oac.cdlib.org/findaid/ ark:/13030/c8jw8mv4/

For videos of Elisabeth Kübler-Ross search YouTube or see EKR Foundation collection of videos at https://www.youtube.com/c/ElisabethKublerRossFoundation/videos

Chris Nikkel (2021) Documentary on One, RTE Radio. The Life and Living Lady (the  story of a cottage in Ireland owned by Dr. Elisabeth Kübler-Ross in the hills of the Cooley  peninsula in Co. Louth. See https://www.rte.ie/radio/doconone/1232634-the-life-and-living-lady)

Ken Ross, son of Dr. Elisabeth Kübler-Ross, discusses the EKR Foundation’s mission, as well as his mother’s important work and legacy. Ep. 330: The Legacy of Elizabeth Kübler-Ross with Ken Ross See https://eolupodcast.com/2021/12/20/ep-330-the-legacy-of-elisabeth-kubler-ross-with-ken-ross/

References

Bowlby, J. (1961) Processes of mourning. International Journal of Psycho-Analysis 42: 317–340.

Casey, C., Lalor, J., O’Neill, D., Finn, E., Nouvain, M. & Lloyd, C. (2018, January 26). The final transformation? Identities After and During Death [Seminar presentation]. Trinity College Dublin, Ireland.

Corr, Charles A. (2021) Should we incorporate the work of Elisabeth Kübler-Ross in our  current teaching and practice and, if so, how? OMEGA – Journal of Death and Dying 83(4) 706-728.

Dugan, D. O. (2019) Appreciating the Legacy of Kübler-Ross: One Clinical Ethicist’s  Perspective, The American Journal of Bioethics, 19(12) pp. 5–9. First published (2004) under the same title in The American Journal of Bioethics, 4(4), pp. 24–28.

Gleeson, L. (2021) Can we ever truly know the depth and breadth of the grief experience? Inside Out 95 pp. 58-61.

Hinton, J. (1967) Dying. Penguin Books.

Kübler-Ross, E. (1969/1973) On death and dying, Routledge.

Kübler-Ross, E, and David Kessler. (2005) On Grief and Grieving, Simon and Schuster.

Lyckholm, L. J. (2004) Thirty Years Later: An Oncologist Reflects on Kubler-Ross’s Work The American Journal of Bioethics, 4(4): pp. 29–31.

Newman, L. (2004) Obituary - Elisabeth Kübler-Ross: Psychiatrist and Pioneer of The Death-And-Dying Movement. British Medical Journal, 329 (7466): 627.

Nikkel, C, (2021, July 15) The Life and Living Lady [Radio broadcast]. RTE. https://www.rte.ie/radio/ doconone/1232634-the-life-and-living-lady

Parkes, C.M. (2013) Elisabeth Kübler-Ross, On death and dying: a reappraisal. Mortality, 18, (1) 94–97.

Parkes, C.M. (1972) Bereavement: Studies of Grief in Adult Life, International Universities Press.

Parkes, C.M. (April 1964) Grief as an Illness, New Society, Vol. IX.

Parkes, C.M. (August 1964) Effects of Bereavement on Physical and Mental Health: A Study of the Medical Records of Widows, British Medical Journal Vol. II 274-279.

Siegler, M. (2019) Recollections of Dr. Elisabeth Kübler-Ross at the University of Chicago (1965-1970) The American Journal of Bioethics 19(12): 1-2.

Stroebe, M, Schut, H, Boerner, K. (2017) Cautioning Health-Care Professionals: Bereaved Persons Are Misguided Through the Stages of Grief. OMEGA—Journal of Death and Dying 74(4), pp. 455–473.

Wainwright, L. (1969) A profound lesson for the living. Life 67(21) pp. 36-43.

Westberg, G. (1979) Good grief: A constructive approach to the problem of loss. Augsburg Fortress Publishers. 

IAHIP 2022 - INSIDE OUT 96 - Spring 2022