(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.)
=============================================
“It is hard to have a good death when one is in terror. I saw many good deaths in hospice where both patients and their families were ready, and death occurred gently. I also met people who felt they were failing at their own deaths; some who didn’t feel ready to die; others who felt frightened and unprepared. There were many times I, too, felt frightened and unprepared in the face of a difficult death. “Some deaths are tame, others are feral: wild and unpredictable.” – Eve Joseph, In The Slender Margin: The Intimate Strangeness of Death and Dying.
“The good death.” This is an idea that I grapple with as an end-of-life doula (EOLD). Why? Because I have accompanied people who fear they are not dying well, witnessed deaths that are not “good,” and tried to provide solace to family members racked with regret that their loved one did not die “better.”
To be honest, I have felt this around my own losses too. In general, EOLDs and educators tend to avoid emphasizing the idea of the good death, in order to open doulas’ hearts and minds to the wishes, needs, and circumstances of each person they serve. We are taught not to attach to a given outcome. But I believe that most of us carry an idea of the good death. It shapes how we relate to the people we serve, as well as to how we judge whether we have been useful, successful, or helpful.
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 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 healthcare 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 an EOLD, 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 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 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 motives 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 themselves with social context and history. For example, younger people with varied sexual orientation 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. EOLDs 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, which 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.
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.
(Please scroll down to comment.)
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.
Dr. Richard Lugg, National Secretary, Doctors for Assisted Dying Choice, Australia, recently wrote: ” In simplistic terms, a good death is one that takes place at the time and place, and in the manner, that the patient wants (or more operationally, that meets the patient’s preferences). Duration is also important… The patient can be expected to want to minimise the distress to those attending the death.”