Is the “good death” a good idea? (part 2)

(Michele Bograd is a psychologist and end-of-life doula (EOLD) in the Boston area. Used with permission, this article first appeared at https://inelda.org. This is the first of two FEN blog installments, and the opinions expressed do not purport to reflect the opinions or views of INELDA or its members.)

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Pain and The Good Death

It is a common assumption that people should not be in pain when they die, that we have the right (if possible) to die free of pain. I want to make clear I resonate with this idea. I trained in a hospice center and saw many occasions where medication was arguably necessary and requested by the person or the family. At the same time, I was troubled by what I experienced as uniformity in how people were medicated.

Barbara Karnes, a leader in our field, has invited us to reflect on routine sedation and anti-anxiety medication in the last days or weeks of life. She explains that death often is not painful, but pain can be part of certain disease processes. She wonders whether we rely too much on medication to numb different kinds of pain, both physical and psychic.

She cautions, “What I really believe is that most often the issue of pain during the dying process is more of a concern for us the watchers (that includes doctors and nurses as well as family and significant others) because we are afraid and not understanding what is happening and less a physical reality of the dying person … [T]hat natural, normal labor we are watching is then translated into the belief that physical pain is occurring.” The explanation of the good death becomes more a justification than a caring reason.

The Good Death: Monolith or Evolving Contradictions?

End-of-life doulas (EOLDs) often talk about the goals of our work (which I am strongly suggesting are imbued with our ideas of the good death) as if they are singular and clear. But in reality, there are often contradictions, evolving wishes, and conflicts about the good death. Take the individual who wants to be cremated when it is against their family’s religion to not bury the body. Or the hospice that allows only six people in a room when a very large family arrives to sit vigil. There is always slippage or tension about dying and death at the personal, familial, communal, and cultural levels.

Additionally, people’s ideas for the dying and death they hope to have continue to evolve and change depending on levels of pain, closeness to death, spiritual moments, a recent new clinical trial, or an unexpected return to cultural practices of childhood. The end-of-life doula needs to be agile and active to adapt to shifting wishes and goals of their dying clients. This entails gracefully surrendering our previous maps – not always easy when we are wed to our ideas of the good death.

Death Doesn’t Cooperate With Our Plans

It may be obvious, but we often forget or don’t anticipate that the biggest impediment to the good death is death itself. Eve Joseph writes, “There is no promise of a good death.” The idea of a good death, the planning and anticipation central to a doula’s skill set, may have unintended impacts when the death is not what we or the family imagined.

As doulas are sitting vigil, how much we are able to be present rests on whether we are troubled by the gap between the death we wish was happening and the death that is unfolding. “When I sit with a dying person … if I allow one single thought of outcome to rear its head, the truth of the moment dies. I’ve stopped being with what is and I’ve started to have ideas about the way I think it should be … there is no good or bad death. Being with dying is simply being with dying; each being does it his or her way,” states Joan Halifax in Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death.

The Aftermath of Death

I have an unsettling question: Do EOLDs do a disservice to our clients through a focus on control, choice, and comfort – through our focus on the good death? It is not uncommon for the best-laid plans to be dashed by reality.

Given my mother’s very long life, it didn’t occur to me that she wouldn’t have a slow decline where we would gather and see her off. Several days before my arrival, she died suddenly. I was confronted with my disappointment of what I wanted and believed we would have. I actually felt cheated, as if all the planning and conversation promised me an outcome. My ideas about the death I wanted her to have were shattered by reality – and my holding onto those ideas made my grief harder.

 So What Does This All Mean?

An EOLD reflected, “In the doula world, we often have the vision of an ideal death. But death is messy.” As I am growing as a doula, I am more aware that it’s essential I am in constant inquiry with my ideas and feelings about a good death, which can – without my conscious knowledge – lead me to shape a person’s dying, although I believe I am only fostering their own wishes. We cannot avoid having ideas about desirable or good deaths. But being committed to bringing them to the light of day counter-balances their possible negative influence and painful consequences.

I also have begun to build in uncertainty in the maps and perspectives I create with people I serve: The best-laid plans may not happen. We’ll do all we can, while letting go of outcome. In At Peace: Choosing a Good Death After a Long Life, Samuel Harrington writes about “the recognition and acceptance of the inevitable and, most important, an image of the possible.” Ann Neumann, in The Good Death: An Exploration of Dying in America, writes, “There is no good death … There are many kinds of good enough death, each specific to the person dying. As they wish, as best they can.”

The Possible, Not the Guaranteed. Don’t Over-promise.

Perhaps our greatest gift to the dying and their loved ones is our capacity to be with the death that is theirs. Václav Havel believed that hope was not the same thing as optimism. It was not, he believed, the conviction that something would turn out well. Rather, it was “the certainty that something makes sense, regardless of how it turns out.”

Roshi Joan Halifax puts it most strongly: “The concept of a good death can put unbearable pressure on dying people and caregivers, and can take us away from death’s mystery and the richness of not knowing … The stories we tell ourselves – good death, death with dignity – can be unfortunate fabrications that we use to try to protect ourselves against the sometimes raw and sometimes wondrous truth of dying.”

(Author’s note: I did not consider a “good death” that is hastened and not “natural,” including Voluntarily Stopping Eating and Drinking (VSED) and Medical Aid in Dying (MAiD). The dominant, popular narratives about a good death rarely address a planned exit. Because of legal constraints or religious tenets, many conversations and actions about choosing a good death happen in the margins or shadows – if they occur at all. Unfortunately, when they are public, we know these conversations are often reactive and polarized.

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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.