Dr. Elizabeth Kübler-Ross introduced her pioneering work with hospice patients in her illuminating 1969 book, On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families. Her goal of the book was not to provide caregivers with guidance on their personal grieving process, but rather to “describe a set of behaviors and emotions that may be experienced by a patient facing the end of life, and by describing them, improve understanding for both the patient and caregivers.” [1]

Grief in Terminally Ill Patients

Familiar to many, Kübler-Ross described five fluid stages of grief she observed in terminally ill patients: Denial, anger, bargaining, depression, and acceptance.

• Denial: defense mechanism engaged to protect the self from reality of a terminal illness. Denial may come in the form of denying the prognosis, belief that the lab or scan results are erroneous or the health care provider is fraudulent.

• Anger: natural emotional response to a terminal illness. Anger may be directed at self, loved ones, providers.

• Bargaining: a negotiating act of engaging with medical, social, religious, or spiritual entities to be saved from dying and death. Bargaining can be internalized and externalized.

• Depression: encompasses physical and emotional aspects, including fatigue, sadness, hopelessness, and an inability to find pleasure.

• Acceptance: realization that one’s life is coming to an end. Acceptance may include making funeral arrangements, “bringing one’s house in order,” and reminiscing with loved ones.

In spending many hours with dying patients, Kübler-Ross identified the emotions and feelings they expressed on their journey toward end-of-life. Kübler-Ross is rightfully credited with changing the way we approach death and how we talk and listen to dying patients. What had previously been taboo in Western culture—talking about dying and death—not only shifted the medical community’s views of death but also popular culture’s views. [1] A reevaluation of Kübler-Ross’s work has cemented her far-reaching influence on palliative medicine. [2]

How Kübler-Ross has Influenced My Work

I first read her book as an undergraduate psychology student in 1989 and was fundamentally changed as a human. Thirty-four years later, my dog-eared, notated paperback is a treasure to me, as it has been to millions since she wrote it. I have returned to it often, for comfort, understanding, and curiosity.

Recognizing that grieving the death of a loved one can be similar but different than the deceased, Kübler-Ross co-authored the book, On Grief and Grieving: Finding the Meaning of Grief through the Five Stages of Loss, with David Kessler. It was published in 2014, ten years after her death. In 2020, Kessler wrote, Finding Meaning: The Sixth Stage of Grief. He writes, “Your loss is not a test, a lesson, something to handle, a gift, or a blessing. Loss is simply what happens to you in life. Meaning is what you make happen." What Kessler calls the “sixth stage of grief” is similar to contemporary bereavement research, which identifies meaning-making a central aspect of the grieving process.

In contrast, however, thanatologists now view grief as an aspect of human existence, experienced in linear stages but rather in a task-oriented, non-linear process. Throughout this process—with no fixed staging or timeframe—a client works through the tasks of grief. Dr. Robert Niemeyer, director of the Portland Institute, identifies five tasks of grieving: Accepting the reality of the loss; experiencing grief’s myriad emotions; returning to life’s demands; adjusting one’s relationship with the deceased; and reconstructing one’s life story after the loss.

In future posts, I will further explore contemporary understandings of grief, including the Dual Processing Model of Grieving identified by Stroebe and Schut (1999), which describes how a grieving person oscillates between tending to loss-oriented tasks and restoration-oriented tasks.

As a psychosocial oncology, existential, grief counselor, I have had the privilege and honor to walk alongside people dying of cancer. They have shown me dignity, patience, resilience, humor, fear, and the impermanence of life. During our work together, they teach me what matters most to them. I can attest to one of Kübler-Ross’s most profound observations:

We run after values that, at death, become zero. At the end of your life, nobody asks you how many degrees you have, or how many mansions you built, or how many Rolls Royces you could afford. That's what dying patients teach you. [Elisabeth Kübler-Ross Family Limited Partnership]

I remain indebted to Dr. Kübler-Ross’s strength, compassion, and empathy.

Notes

[1] Tyrrell P, Harberger S, Schoo C, et al. Kubler-Ross Stages of Dying and Subsequent Models of Grief. [Updated 2022 Nov 19]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK507885/

[2] Sisk BA, Baker JN. The Underappreciated Influence of Elisabeth Kübler-Ross on the Development of Palliative Care for Children. Am J Bioeth. 2019 Dec;19(12):70-72. doi: 10.1080/15265161.2019.1674411. PMID: 31746709; PMCID: PMC6886676.