We all have stories to share. When it comes to end of life care and advanced illness, personal stories and narratives provide support and guidance unrivaled in power. Perhaps a doctor’s words or a nurse’s reassurance may help families struggling with chronic illness or the impending death of a loved one. Yet, as a physician I find it hard to rival the guidance and depth of understanding that patients and families experience when someone– anyone–shares their own story.
Katy Butler, is a master of narrative writing. An acclaimed writer with a list of honors that would make any writer drool, Ms. Butler’s writing is not only skillful, but personal. She has two stories to tell: that of her father, and that of her mother. The first story she tells is of her quest to have her father’s pacemaker disabled so that he could experience a natural death as he suffered with dementia. The second is that of her mother’s choice to forgo a serious heart surgery, despite the ‘promise’ of living well into her 90’s.
With each piece of hers that I read, I can’t help but feel that the world of “end of life advocacy” is fortunate to have a voice like Katy’s. Not only is she an amazing writer, but she writes from personal experience that leaps off the page. She also happens to be a lovely person, who I had the privilege of sharing a meal with a few years ago as she was performing research for her book “Knocking on Heaven’s Door”.
Although I haven’t yet read her book (it is on the top of my list), but if these two pieces by Ms. Butler are any indication, then it is surely a masterpiece.
This is storytelling at its finest.
- From the New York Times: What Broke My Father’s Heart: How a Pacemaker Wrecked Our Family’s Life
- From the Wall Street Journal: The Ultimate End-of-Life Plan
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