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The Caregiver’s Bookshelf: Essays on the End

By Paula Span, The New York Times


April 26, 2012


Let me acknowledge that perhaps not everyone wants to settle down in a comfy chair with a glass of wine, a purring cat, and 22 very personal essays about death and dying. My daughter has taken to asking me whether I wouldn’t rather read — or write — about puppies and kittens.

But a new anthology called “At the End of Life: True Stories About How We Die” contains some truly gripping narratives that illuminate a hard truth about death in our culture: it is always so complicated, so much thornier than we think. A good death appears to require as much effort and commitment, from many parties, as a good life. And it happens much less often.

Lots of different kinds of people weigh in here: social workers, doctors and nurses, family members, hospice staff, a 911 dispatcher. A Houston gastroenterologist remembers the first time a grieving family asked her to turn off the ventilator in an intensive care unit. A leukemia specialist agrees to administer a third round of chemotherapy to a man who desperately wants to live, though some of the doctors’ colleagues believe he should refuse this painful and likely futile treatment. Not all the dying are elderly: a mother recalls every step of her decision to donate her 19-year-old daughter’s organs after a fatal horseback riding accident.

Conflict seems almost endemic in these final weeks and months. A very elderly man accedes to a colostomy he doesn’t want; a specialist overrules an intern trying to keep her patient from being intubated against his clear wishes. Perhaps the authors, in seeking drama as writers will, give short shrift to those people who actually do call hospice and die quietly at home with their families. As I read “At the End of Life,” I was glad I had known and seen people (including my mother) who managed that.

But the accounts in the book are probably reflective of reality, given what we know about how many people die in their homes — 19 percent, according to the most recent statistics from the Centers for Disease Control and Prevention, though the percentage is climbing. And reality is what “At the End of Life,” the first book published by the journal Creative Nonfiction, delivers.

Its authors, and editor Lee Gutkind, deserve credit for being unsparingly honest about doctoring, about decision-making, about their own ambivalent emotions. They have a lot to teach us.




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