Acceptance, Denial, And Related Responses To Death

(Lara Stewart-Panko is a registered social worker and family educator residing in Ontario, Canada. She is a doula and educator with the International End-of-life Doula Association (INELDA). This article, used with permission, first appeared at https://inelda.org/acceptance-denial-and-related-responses-to-death/)

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Shall we agree that there’s an implicit message we often receive that acceptance is “good” and denial is “bad”? In Elisabeth Kübler-Ross’s stages of grief model, denial and acceptance are used to name two of the stages, and while we know the stages are not meant to be interpreted as neither linear nor hierarchical, most of us will automatically see denial as an “inferior stage” and acceptance as a “healthier stage” to aim for. We might think, “Let’s get past the denial stage to acceptance, because we really need to work with what is.”

Let’s reconsider how denial and similar responses very much can be working with “what is.” When reality shifts in a seismic way, as it does when we receive a terminal diagnosis or experience the sudden death of someone we love, denial can be a very protective, healthy response, and we’re wise to honour it, not attempt to push anyone past it. Acceptance will come as it comes—in whole or in part—and we need not impose an agenda on another’s process.

Kübler-Ross stated, “[T]he need for denial exists in every patient at times, at the very beginning of a serious illness more so than toward the end of life. Later on the need comes and goes, and the sensitive and perceptive listener will acknowledge this and allow the patient his defences…”

Denial and Its Family

Any human can experience a unilateral denial response when encountering extreme stress. This protects the psyche from overwhelming information and buys more time for one to adjust to the vastly altered reality.

I think of my stepfather, who—after a two-hour appointment in which my mother was assessed and then diagnosed with dementia and the geriatrician painstakingly explained what we were looking at—announced, “OK! So there’s nothing wrong with her!” Even after years of experiencing her cognitive decline, hearing the diagnosis and its implications was just too much for him.

Robert J. Kastenbaum, a scholar in the field of thanatology, has articulated other coping mechanisms that may appear to be abject denial, but are nuanced and less absolute:

Compartmentalizing

When compartmentalizing, a person can discuss aspects of dying, make choices accordingly, and engage in the physical care the situation demands while also talking of future plans that are unrealistic, such as going back to school or moving house. In this way, death is in one box and unrestricted life is in another.

Selective Attention

This occurs when we focus on aspects of a situation that are easier to take, or even soothing. I recall attending a treatment with a client who gripped the nurse’s hand as she said, “I really like your eyebrows,” and the two of them discussed each other’s eyebrows and places they’d had them done while the painful medical procedure was performed by the attending physician. This distraction and mindful awareness of something that was actually there—the nurse’s beautiful eyebrows—allowed the client to cope well with a very challenging experience; she wasn’t denying whatsoever that it was happening.

Selective Response

Engaging in selective response allows people to exercise choice when it comes to what they share or spend time on. While people may have many thoughts and feelings about dying, they might choose to not discuss them with others. Or something else may feel more pressing to address,  such as completing a project. If people facing death don’t talk about death or grieving directly or openly, it does not mean they’re in denial. They may simply do best processing internally, or they may have something else that is more important to them at that time.

Resistance

Sometimes rightly framed as the “anger” aspect of grieving in the Kübler-Ross model, resistance is a way of relating to dying that challenges the certainty of a diagnosis or prognosis. Classically characterized as the patient who “fights” the disease, resistance can be an empowering blend of denial and acceptance, allowing people to explore and determine the boundaries of their experience for themselves. Other times, resistance can be an exhausting endeavor that eventually shifts into a different relationship with the circumstances.

When we’re taking stock of the various responses we may have in relation to death, we’re wise to note that they might be applied across situations, or they may differ based on timing or whom we’re interacting with. For example, someone may communicate complete acceptance with one friend but engage in resistance-type conversation with another. As end-of-life doulas, the greatest gift we can bring to such variations is respect, witnessing, and understanding. A person with a terminal illness still has relationships to manage and, often, a great need to protect their own emotional well-being.

Questions for Self-Reflection

It’s important as death workers that we continuously stay attuned to ourselves, note our strengths and vulnerabilities, and assess areas where we can grow. Below are some questions you might contemplate to deepen your understanding of your relationship with denial and acceptance:

• In what ways have you personally experienced denial or the related responses named above? How did these responses help and/or hinder you?
• Have you personally experienced acceptance in different ways at different times? What did some of that look like for you? Was acceptance something you intentionally worked towards, or did it occur organically?
• Were there times in your life when another person tried to push you in one direction or another with respect to denial or acceptance? How did that feel for you? How did it impact your choices or relationship with that person?
• In thinking of some clients you’ve served, can you recall times when you felt uncomfortable with the presence of acceptance, denial, or related responses? What was hard for you? What did the situation(s) require in order for the client to continue to be well-served, and for you to be well, too?
• Have you had clients whose response of denial, acceptance, or a blend of the two inspired you? Stimulated greater compassion? Humbled you? Something else beneficial?

As always, as End-of-Life Doulas, we’re tasked with supporting clients and doing our best to meet them where they’re at while checking any personal agenda at the door. Some days, this can be easier said than done. May you be gentle with yourself and others as we all dance with acceptance, denial, and related responses.

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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.

Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.