Meg Claire had dedicated her career to the success of grassroots nonprofit organizations. Currently, she
serves as a director at one of the country’s most prestigious children’s hospitals. For more, follow Meg on Twitter.
I want a good death. You probably do too. But people who have made clear their decisions about wanting to die at home surrounded by loved ones, still end up dying in ICUs. They undergo treatments that prolong their suffering and may shorten their lives, even when they know they are imminently dying. We hope for a heart attack, one big one to finish us off, but the odds aren’t in our favor. For most of us, it’ll be the long, slow decline we dread.
But how much should be done to prolong life like that? When should those efforts stop? How hard should we struggle for or against the wishes of the dying? Twelve Breaths a Minute: End of Life Essays, edited by Lee Gutkind (Creative Nonfiction Foundation, 2011) addresses those questions and many more. This collection of 23 essays is written by doctors, counselors, hospice workers, nurses, EMT dispatchers, attorneys, and family members—all of whom write honestly about their experiences witnessing the end of life. The book is an excellent and powerful resource for family caregivers, palliative treatment professionals, and clergy. It should be required reading for all nurses, physicians, and medical students.
While each essay presents individual experiences, what emerges is a larger picture of how, in the United States, in the early years of the twenty-first century, people are going about the business of dying. We learn that 71% of men admitted to nursing homes don’t last three months. And 80% don’t last six months. We learn the code words and nicknames used by medical professionals. Essayist Valerie Seiling Jacobs tells us “the nickname residents had for old people, for patients who required a ton of paperwork and tests but were unlikely to get better. ‘GOMERS’ they called them—Get Out of My Emergency Room.” But we also learn about the secret grace with which people face their own death. And the immense, sometimes painful courage it takes for family to stand by their side. We learn about cultural traditions around death and the mysteries that occur at the end of life, like one long-held multi-cultural belief suggesting opening a window just after someone died to let the soul escape. And we learn that apparently a great many of the dying report having casual conversations with deceased loved ones just prior to their own death. We learn that people can have a good death.
The essays are sometimes emotionally challenging to read, but they’re endlessly captivating.
- An 18-year-old falls into a traumatic coma and her mother has minutes to decide whether to donate her organs. She develops loving friendships with those people who received the gift of life that originated from her daughter’s death.
- A burned out hospice nurse estimates being present for the deaths of over 1,500 people. She decides to transfer to labor and delivery where she vows to deliver 1,500 babies before retiring.
- In a surprising turn of events, an inexperienced ER intern has to treat his attending surgeon’s dying mother.
One of the most fascinating essays is “Waiting (to Go Home)” by Howard Mansfield who regularly visits nursing homes. With a wry humor (“Sea View, this place is called. No sea, no view—no surprise.”), and aching heartbreak (“I see a woman…collapsing into herself the way the aged do when they’re wheelchair bound, taking on the shape of a soft, deflating ball.”) he describes the day-to-day goings-on in an average nursing home.
The hardest to read is Beecher Grogan’s essay “Simple Gifts” about her eight-year-old daughter Lucy’s torturous battle with leukemia. “There was constant fear and anxiety but some beauty too,” writes Grogan. “Beauty in being forced to live in a moment-to-moment appreciation of the wonder and the gift of our children. Beauty in the grace with which our children bore suffering and tried to protect us from the darkest places.”
Sometimes the writing is simply beautiful. In “Yellow Taxi” Eve Joseph writes, “I believe it would be a fine thing to leave the world in a small wood and paper boat holding a lighted candle.”
Twelve Breaths a Minute tacitly magnifies our collective fears about growing old and dying. We’ve decided that death is a choice; one we don’t have to accept if we don’t feel like it. This is a uniquely Western—and specifically American—phenomenon. Doctor Jonathan Weinkle describes the medical establishment’s treatment of death this way: “The system is a little like junk mail. It keeps coming whether we want it or not, and it is much more difficult to opt out than to let it keep coming. Lab tests, x-rays, EKGs, and consults pile up, adding more useless information that obscures the fact that someone we love is dying, and nothing we do in response to the junk mail of test results is going to change that.”
“The American Way of Death” by Jessica Mitford, written over 50 years ago, shows us not much has changed in our absolute refusal to accept death as a part of life. Doctors use euphemisms to notify us of our loved one’s “passing”. Twelve Breaths essayist Joe Primo reminds us “…every ten acres of cemetery has approximately one thousand tons of steel, twenty thousand tons of concrete, and enough wood to build 40 houses. Not to mention enough toxic chemicals to embalm a village.” After death, we’ve removed the elements of family and community and instead inserted a “concierge” service that controls our grief by inhibiting intimacy. The funeral home is a theater of avoidance with pink lighting. We spend thousands to ensure our loved one is “properly disposed of”.
The most significant takeaway from Twelve Breaths a Minute that I will remember for the rest of my life is about permission. Apparently, the dying hang on longer if they think you can’t handle going on without them. When grief counselors step in and encourage the family to “give permission” to their loved one that it’s okay to let go of life, they let go. Tell them you’re ready; that they have your permission to die. Studies have shown that this simple statement of permission has sped impending death, even for the comatose, markedly decreasing suffering.
Twelve Breaths reminds us that on the continuum of life, death is the counterpart to birth. It’s just on the opposite end of the spectrum. It deserves the same reverence, the same respect, the same sense of community-building, and the same joy. The same recognition of a life, regardless of whether it is beginning or ending.
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