Since May of 2018, I’ve been interviewing a variety of narrators—from nurses and doctors to clergy and academics—about their experiences with medicine. With my own research centering around aging and end of life, death and dying is a natural point of discussion between myself and the narrators I’m interviewing. Through this process and these conversations, I have come to hold a strong conviction that the connotations evoked by using words like “death” and “dying” in our culture are sorely in need of a semantic overhaul. As a result, I set out to further understand how people who have brushed against death (in any sense) talk about it, and I’d like to share a few of those stories with you through a series of blog posts.
In this series, I’ll be posting clips from those interviews and reflecting on them through the lens of death and dying studies, or the study of thanatology. As we reflect upon these interviews, there are a few crucial questions to anchor our discussion:
- What is the state of death in our culture?
- What effect is created when we experience death in oral history?
- How does experiencing death in narrative translate to our own understanding of mortality?
- How do moral judgments of good and bad play into these stories?
As with any kind of story, it is important to consider how we exchange stories of death. We walk a thin line between experiencing a narrative and creating a spectacle of it. An important piece of maintaining respect for the story is holding reverence for the narrator and their narrative. After all, the stories of death that I have helped archive touch on some of the most vulnerable and momentous episodes of each narrator’s life. [i] Sharing in those moments is a privilege and I hope you will join me maintaining an air of respect as you listen to these stories—something like whispering while in an old cathedral.
In this opening clip, Brian Cornell, clergy for the Methodist church and volunteer chaplain for many years, mentions “being there at the bridge,” highlighting how death is a trip between two places. Whatever your spiritual leanings, thinking of the dying process as a journey has very practical implications for our time on this side of life. When we consider death as a journey, we give it a definitive beginning, middle, and end. Drawing these delineations helps us put death in a familiar framework. All successful narratives have beginnings, middles, and ends, after all. But most important to an American death ethic is the beginning. It is our habit to never truly accept that our time is arriving and to fight furiously “that good night,” but time and again we have seen the trauma caused by denial, both in the eventual mode of death (e.g. CPR or loved ones having to unplug life support) and in its effects on the ones left behind. We love to fight death, but we never win. Choosing our battles is an important part of a healthy end of life plan. When the journey of death has a beginning then we have accepted it as a natural sequence, something necessary and free of shame or guilt. There’s a reason Monica Williams-Murphy called her 2011 guide to the other side “It’s OK to Die.”
Death is a ubiquitous experience that is a deeply entrenched part of the American medical experience, yet, despite it being something that everyone will experience, there remains great discrepancies between how we envision our final chapter and how it elapses:
In California, for example, 70 percent of individuals surveyed said they wish to die at home, yet 68 percent do not. Instead, many of us die in hospitals, subject to overmedication and infection, often after receiving treatment that we do not want. Doctors know this, which may explain why 72 percent of them die at home.[ii]
It’s difficult to explain why so many deaths aren’t satisfactory, but Ivan Illich put it this way: “The ritual nature of modern health procedures hides from doctors and patients the contradiction between the ideal of a natural death of which they want to die and the reality of a clinical death in which most contemporary [people] actually end.” [iii] The rise of hospice and palliative care has advanced the experience of dying with bounding strides in recent decades, but there’s still a great deal of work to do in order to rectify our wish to die at home with the reality of that experience.
The Conversation Project posits that increasing our conversations about end of life is a good place to start. [iv] With the rise of projects centered around the medical humanities, such as the Stories to Save Lives Project from SOHP, we can work within a new framework to consider death and dying differently.
In like fashion, I hope that through these blogs posts, you will gain a little more familiarity (and perhaps even comfort) with not just the topics of death and dying, but discussing them—an essential first step towards creating a satisfactory end of life story for yourself and your loved ones.
I’ll leave you with one last thought to ruminate on. In this clip, Brenda McCall, a retired nurse, considers the hard work of sitting with one’s own mortality. She attributes the continuum of declining independence we experience as we age to a fundamental fear of death. Perhaps accepting our own fragility is the first step towards accepting our own mortality. At almost any age we can observe the body’s failures and begin to do the difficult work of accepting our mortality and preparing for our (eventual) deaths.
i See Christine Valentine, Bereavement Narratives: Continuing Bonds in the Twentieth Century (London and New York, 2008).
ii See MacPherson and Parikh, “Most people want to die at home…” https://www.washingtonpost.com/national/health-science/most-people-want-to-die-at-home-but-many-land-in-hospitals-getting-unwanted-care/2017/12/08/534dd652-ba74-11e7-a908-a3470754bbb9_story.html?noredirect=on&utm_term=.ce54fcce6757
iii See “The Political Uses of Natural Death”