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How did you die?

March 1, 2016
by Brandy Schillace, PhD
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Brandy Schillace, PhD

Edmund Vance Cooke's poem "How Did You Die?" ends with the final line, "It's not the fact that you're dead that counts, but only how did you die?" Published in 1903, this always struck me as both strange and poignant. Strange because it's a question we never ask, and poignant for the same reason. Death ought to be near us, even dear to us. But we are not familiar. We do not embrace death. We cannot even talk about it when it matters most.

The mother of a close friend had advanced breast cancer. She wanted to put her affairs in order, and yet, even her doctors encouraged her not to think about this "negative" consequence. Positive thinking, a focus on replacement parts and a strange dedication to medical immortality seem to permeate the atmosphere. What happens, though, when the inevitable comes? When death approaches, will we find ourselves unprepared? And, if so, what can we do to change it?

End-of-life care workers see the pain and frustration of residents and families. They also see the confusion, the need for answers. A neurologist friend lamented patients want their doctors to be priests, but most are simply not prepared for the role. But, then again, in death we find the one commonality all have experienced in part and all will someday face in full. Those who work in end-of-life care (and even those who write about it!) create, by our association with death and dying, important access points. We have ability, and responsibility, to reach beyond the narrow confines of our private experience and start a dialogue about death.

I've attended the first Death Salon, spoken at death talk round tables and written reviews of the "Natural Death Handbook" (published in the United Kingdom). I've read books, met morticians, attended family wakes and researched everything from death masks and anatomy to sky burial and necrophagy (eating the dead). These explorations culminated recently in the release of "Death's Summer Coat," where I do what no historian is supposed to do—I leapfrog through 400 years of history across continents and cultures in order to answer the question, yet again: How do we die?

What I've discovered cannot be reduced to a single story. Responses to death vary by culture—and by that culture's own experiences of death and trauma. During the Cambodian Pol Pot regime (1975–9) more than a million people died, and the natural cycle of life and death ruptured through trauma. Cambodians didn't just reconstruct their lives, but also their deaths—they invented a whole new means of mourning, Devon E. Hinton, MD, found. They did not attempt merely to "move on." They instead created new rituals for dealing with mass death, a process called chaa bangsegoul. Participants can bring a picture of the dead or conjure them in their minds while monks chant and give blessing to dead. 

I like this example because it helps us remember we are always limited by our own cultural perspective. In Western and developed nations, we are very often insulated by relative wealth, high-brow health systems, hygiene and water sterilization that screen us from unmediated images of death. It also demonstrates that cultural practices respond to changing needs. And needs in the United States do, in fact, appear to be changing.

All around us, there is a tug-of-war between silence and speech. On one hand, the healthy are encouraged not to think about illness and the ill are asked not to think about death. But on the other, people have begun to realize the toll this takes and are looking for outlets and answers. You can find reference to this shift in the news, but also in the sudden success of the "death positive" movement—from the "death cafes" and "death dinners" and even "death round tables." You can even see it in the recent publication of books on death. The New York Times recently reviewed five, including "When Breath Becomes Air" by neurosurgeon Paul Kalanithi, who succumbed to cancer in March 2015. Is it more powerful when a doctor can speak about death? Perhaps. But it is everyone's responsibility to try.

"But how do I talk about it?" That's the question I hear most often, and in some unexpected places, most recently while speaking to my financial planner in advance of tax time. It's a shift in body posture, usually; a look in the eye that suggests a trepidation, but also a conspiratorial hope that—as an author writing about death—I might be safe to approach. When I speak at round tables, but it's never during the Q-and-A that this manifests. It's after, in the quiet and dark of a reception area, or behind closed doors, in out of the way places. Alternatively, I am asked these questions in more public but also more anonymous settings—online, or during radio phone-ins. What should I say to my brother? Should I be planning my parents' funeral? He's a widower; should I ask about it or pretend I don't know? What should I do with my father's ashes? Is it too early for hospice care? Too late?

And in so many ways it still seems like we're asking the same thing: How do we die? And how do we do it "right"? The tangible relief that comes when they see that I'm happy to speak of it always surprises me. My financial planner eagerly leaned forward and said, "This is so much easier than I thought it would be."