In June 2010 I read a chilling New York Times Magazine article, What Broke My Father’s Heart, by Katy Butler, who described how her father’s heart outlived his brain because a pacemaker kept chugging along. It kept going despite that the rest of his body, due to dementia, was giving up and shutting down. Butler explained how her mother tried to get the pacemaker removed but physicians turned down her request again and again. Also included in the article were descriptions of her mother’s extreme health consequences after years in a caregiving role.
I posted the article under the “must read” section of this blog, where it remains, still timely after several years, and I’ve read it again and again. The reason that I keep re-reading it is that it feels like we all wish for a death without prolonged suffering, ICUs, and electronic shocks to our chests, but most of us do not get what we want.
Recently in The Ultimate End-of-Life Plan, published in the September 7, 2013, Wall Street Journal, Butler continued the story, focusing on her mother’s death. Detailing how her mother made decisions, often against medical establishment recommendations, Butler explains that her mother did not want the type of death that her husband experienced.
Most Interesting Passage
Why don’t we die the way we say we want to die? In part because we say we want good deaths but act as if we won’t die at all. In part because advanced lifesaving technologies have erased the once-bright line between saving a life and prolonging a dying.
Katy Butler, a San Francisco journalist, has now published a book, Knocking on Heaven’s Door, in which she shares more of her family’s story, including interviews with medical professionals as well as passages from her mother’s diary. Read Paula Span’s review of the book at the New York Times New Old Age Blog. Physician, author, and Stanford Medical Professor, Abraham Verghese, also published a review of Butler’s book in the Times.