How Can We Reflect on This Idea of the Good Death?

Let’s begin by acknowledging that we are humans. We will die. All mortals reflect on death and create ideas (both personal and collective) about ways to die well. We each exist in a belief system about the good death that is far bigger than us as individuals. Like fish unaware of the water they swim in, those belief systems are often invisible and taken for granted, even when they are impactful. 

Then there are our own life experiences that morph into believing what a good death is. For example, my father died suddenly, so I have strong feelings and beliefs as an EOLD about people having good and explicit farewells or leaving something behind for the living. After my mother’s death (at almost 102!), the mortuary insisted it was necessary to embalm her, as I was out of town and wanted to see her postmortem. Only later did I learn that is not a requirement, and I remain greatly pained about what was done to her body. From this, I believe as an EOLD that it is essential that people be informed about the breadth of ways to care for our dead. 

Central to the practices of most end-of-life doulas are strong ideas about what we do or provide. I believe these are imbued with ideas about what constitutes good dying or a good death. While they are not universal, they are prevalent and taken for granted. Backed by social science research, a literature review published in the American Journal of Geriatric Psychiatry discusses having agency and taking control of your last chapter, being prepared for the sake of oneself and one’s loved ones, accepting what lies ahead instead of “being in denial,” reflecting and finding meaning in one’s life, being free (if possible) of pain and suffering, acknowledging regrets and making amends, forgiving, leaving something behind, and being prepared and finding peace. Another study on the future of health care of older people found that of the 12 principles for a good death identified in research, eight had to do with control.

As a person and as an end-of-life doula, I am deeply committed to these ideas. So what is the dilemma?

Mainstream Western Definitions

Note that these ideas are Western and humanistic—in contrast to more religious ideas about how to prepare for the end of life that characterized the good death in past history and that remain central in many cultures globally as well as locally. The Association for Death Education and Counseling’s Handbook of Thanatology states, “In contemporary Westernized societies, a good death refers to the process of dying. What matters is how people’s lives end, not consequences in an afterlife. Humanistic factors matter:  consciousness, the presence of loved ones, familiar surroundings, self-efficacy, and freedom from distressing symptoms and pain…Because many people die in excruciating pain following a series of chronic disabilities, there has been increasing demand that medical personnel become educated in sensitive, effective care of the dying; plus, there is a growing expectation that a good death become a medical norm.”

As an end-of-life doula, I wonder how our Western world view, which values the individual autonomy over the well-being of a group, recognizes the range of choices made by a dying person or caregiver. Consider how you may feel when a person chooses not to talk about their terminal prognosis or when a lucid dying parent allows their grown child to make decisions for them or when a client on hospice decides to “fight the good fight” and returns to prolonged, painful treatment. How do we react when someone says that suffering is what God wants for them? Do we stay in dialogue about the feelings and motivations behind their perspectives and choices? Do we urge them toward ideas that reflect our own ideas of a good death? Or do we maintain a fundamental openness to the vast number of ways that death can be approached?

Privilege and The Good Death

Autonomy, choice, being able to assert our wishes (and believing we have the right to do so), expecting to be listened to, having the resources for hospice or a private end-of-life doula—all of these reflect social privilege. How can people have dignified deaths if, because of social location, they have not had lives dignified by social acceptance, access to resources, and culturally humble and accessible systems that promote compassionate end-of-life care to all? How can individuals choose how they want to die if they have not been afforded medical care and resources to live well? How can people have the funeral they want if they battle prejudice, such as being forced to pay more for a larger casket or be refused for cremation because the crematorium cannot accommodate their size? Have we as doulas really addressed the structural inequalities that make it impossible for many to obtain the dying, death, and funeral they desire? Simply, “not all deaths are created equal,” as the Order of the Good Death states.

But we are not talking only about substantial structural barriers to the good death. If people’s lives are shaped by marginalization or oppression, they not only can’t have the death they desire, many have not had the opportunity to dream about what they want. When pain is part of life, people cannot imagine pain not being part of death. For example, because of homophobia, the AIDS epidemic, and prejudicial institutional/medical treatment of queer and trans individuals, many have put their energies into survival and have not had the liberty or privilege of considering how they want to die.

It is essential that EOLDs familiarize ourselves with social context and history. For example, younger LBGTQIA2S+ individuals may be part of communities that are actively working toward sensitive and available end-of-life options and care, in contrast to previous generations that experienced more prejudicial treatment and significantly shortened life-spans. Similarly, in the current political climate, the resources available to trans individuals vary widely community by community, state by state. End-of-life doulas are involved in social action to promote access to culturally aware end-of-life care. They uplift ideas of the good death that are grounded in history and social location, and challenge many of us (myself included) to expand our ideas of the good death and the activism still necessary to optimize its possibility. 

This is an invitation for all end-of-life doulas to learn about the activism within our growing field that will strengthen our abilities to care for the dying and teach us to advocate against social and institutional obstacles that impede compassionate end-of-life care. It is a privilege to be able to contemplate the good death one hopes to have and to assume that social systems will ease the way.

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 a 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 often death 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 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 at a time 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, 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 the 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 an EOLD, I am more aware that it’s essential that 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 counterbalances 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 that 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 Overpromise.

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.”

The opinions expressed in this piece are those of the author. They do not purport to reflect the opinions or views of INELDA or its members.