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Boston Institute for Nonprofit Journalism

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LET’S TALK ABOUT DEATH: DESTIGMATIZING MORTALITY AS CORONAVIRUS LOOMS

death positive coronavirus

There is a lot of advice circulating about how to try to stay physically well, but little talk about psychological angst that the threat of an extremely contagious, potentially fatal disease creates.

There is no convenient time to confront the inevitability of your own death. I first encountered the sharp, drilling terror at the age of 12, when I suddenly developed a heart arrhythmia. For two-and-a-half years, until the exact malfunction was diagnosed and corrected, I was haunted by the fear that I might simply drop dead.

Now, like most 30-somethings, I can mostly get away with willfully ignoring death. But my familiar specter, and the fear it invokes, has crept back into my life as COVID-19 infection rates have exploded across Greater Boston.

“The idea of death, the fear of it, haunts the human animal like nothing else,” anthropologist Ernest Becker tells us in his seminal work, The Denial of Death, which he completed as he himself was dying. “It is the mainspring of human activity—activity designed largely to avoid the fatality of death, to overcome it by denying in some way that it is the final destiny for man.”

A time of mass death, like the current pandemic, boldly outlines both the inevitability of death and the inability of individuals to face it. Brutal accounts of COVID-19 patients dying alone, quarantined for the safety of their loved ones, are juxtaposed alongside images of college students packing beaches and ironic stories of adult children pleading with their parents to stop socializing.

As the infection rate rises, and more individuals are personally touched by the pandemic, more and more people will be forced to confront the mortality of their loved ones, and themselves. There is a lot of advice circulating about how to try to stay physically well, but little talk about psychological angst that the threat of an extremely contagious, potentially fatal disease creates. Many elements of American culture—particularly the taboos surrounding talking about death in a frank and practical manner—have left us ill-equipped to handle this existential crisis. 

However, over the last decade, in the United States and Europe, a growing number of people both in and outside of the funeral industry have been advocating for more openness around death, as well as reform in the way that dead and dying people are cared for. This loose network, which in some circles is called the Death Positive movement (a term coined by mortician and advocate Caitlin Doughty) emphasizes natural and environmentally friendly death practices, palliative end-of-life care, and, most importantly, destigmatizing talking about, and planning for, death.

I reached out to some of these practitioners and advocates in the Boston area. Unlike most of us, these are people who deal with death in a very hands-on manner: hospice volunteers, death doulas, and creators of death-planning guides. I figured that if anyone had good answers about how to work through fear of death and mortality, it would be them.

Richard Davis, a hospice volunteer, has also organized dozens of Death Cafes in the northern Boston suburbs. Founded by Jon Underwood in London in 2011, Death Cafes are open, facilitated discussions about death and associated topics—with mandatory chocolate cake and tea. Davis has been struck by the openness and intimacy of conversations, which he attributes to the fact that many people feel that they can’t breach these topics, even with those closest to them.

“It’s not healthy to just try to deal with it on your own … Just let it out and believe you are not alone [in your fear]. Believe that others share the very questions, the very anxieties, the very uncertainties about it.”

Talking—to strangers, your loved ones, or both—is a theme heavily emphasized by each of the experts I interviewed.

“Being death positive is simply being able to talk about it,” Carol Lasky, creator of the death-planning book Youlopages and another facilitator of Death Cafes, said. “It doesn’t mean you are looking forward to dying. It does not in any way invite people to contemplate suicide.”

“People have a ton of questions [about death and dying] … It seems to me because it is so taboo, or has been so taboo, in a lot of our families and our communities, we just need to be able to talk about it and ask the questions,” Kerri Schmidt, a Boston resident who recently completed an End of Life Doula certificate program at the University of Vermont, told me. “It immediately takes quite a bit of the mystique away from it. It begins to normalize it. If we can talk about it then we can probably deal with it.”

Getting people over the idea that talking about death is “morbid” or taboo is a challenge, Lasky added. “Sometimes that talk is wrapped in laughter. Coming up with crazy ideas of how to dispose of their cremains, for example.”

Schmidt suggested starting from a very practical, pragmatic place, for example talking about what basic documents you need to put in place, and moving slowly forward from there. “Having my ducks in a row [in preparation for death] is incredibly empowering,” Schmidt said. “You don’t have control over death, but you do have a lot of control about how you get there.”

“It’s not fun when someone dies… but you don’t have a choice,” Davis said. “Death can be devastating, but it doesn’t mean that looking the other way is the safe thing to do. Maybe the comfort is in having thought about it a little bit ahead of time.” For example, when Davis thinks about having a green burial (one that uses biodegradable materials), he feels comfort in the thought that the molecules in him may become part of something else some day.

All three also recommended books, television, and online media with death or death-adjacent themes as a good place to break the ice, especially in this time of social isolation. Practical guides to talking about death and dealing with the practicalities include the book Talking About Death Won’t Kill You by Virginia Morris; The Conversation Project, an online guide and media project created by journalist Ellen Goodman, which also now includes COVID-19 content; and Five Wishes, an online legal document guide and creation service. 

Further scholarly reads about how modern Americans deal with death include The Republic of Suffering: Death and the American Civil War by former Harvard University President Drew Gilpin Faust, and Being Mortal: Medicine and What Matters in the End by Dr. Atul Gawande. 

For those looking for a more lighthearted entry to dealing with death, the television series Six Feet Under and The Good Place both tackle the subject head-on. There’s also Ask a Mortician, the popular YouTube channel of Caitlin Doughty, founder of the Death Positive Movement, as well as her books, which are entertaining ways to ease into the conversation. 

Ultimately, the predicted infection and mortality rates mean that none of us is going to come out of this pandemic unscathed. In the meantime, one of the most important things we can do to help each other face fear, and grief, is to be present in our friends and families’ lives, even if it is only virtually.

People often don’t know what to say or do for someone who is grieving, Davis told me, but in his experience with hospice care and grief counseling, “one of the things that people who are grieving crave the most is human contact.” Schmidt echoed this, telling me it is important to “simply be present with people, hold space for them. Allow that person to speak or not speak, to have room for them to feel whatever it is that they are feeling.”

A few days after our initial interview, Carol Lasky sent me an email with an article about the irreverent side of the Death Positive movement, noting that the subject of death had taken on so much more weight in these times.

“If there’s a place for death positivity right now, it’s really about the basic hallmarks of human kindness, of sharing our collective grief and knowing that as this crisis passes, our personal conversations and cultural mindsets will evolve too.”

This article is syndicated by the Boston Institute for Nonprofit  Journalism’s Pandemic Democracy Project. Contact pdp@binjonline.org for more information.

Visit DigBoston.com for daily coronavirus coverage assisted by BINJ reporters. This and other articles are available for reprint at no cost to other outlets.

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A former co-editor of our Iran, Iraq, and Turkey pages, Claire Sadar is a staff writer at Muftah. She holds a BA in history from Dickinson College and a Master’s in Religion from Boston University, where she focused on Islam in Turkish politics and society. Claire’s work has been published in Your Middle East and Foreign Affairs. She also writes regularly at her personal blog, Ataturk’s Republic. Claire’s interests include religious and ethnic minorities, Turkish politics, Islamist political movements, and theories of political change.