Katy Butler wanted her elderly father’s pacemaker turned off, but she couldn’t get a doctor to do it.
In 2001, Butler’s father, Jeffrey, suffered a debilitating stroke at age 79. Two years later, his doctor recommended installation of a pacemaker that would help him survive hernia surgery – a decision that seemed harmless at the time but one that ultimately “helped his heart outlive his brain,” as Katy puts it in her new book, Knocking on Heaven’s Door (Scribner).
Jeffrey Butler became severely demented in the years after his stroke, and died in 2008. Toward the end, Katy and her mother, Valerie, tried to persuade physicians to turn off the pacemaker so he could die a natural death – to no avail. Valerie, who bore the brunt of the caregiving burden for her husband, experienced what Butler terms a “good death” the following year, having learned painful lessons from Jeffrey’s experiences.
Katy Butler is a journalist and author with special expertise in medicine and neuroscience, so she is in a unique position to tell the story of her family’s descent into a caregiving hell. The result is an important, compelling book. It offers an inside view of emotional crisis blended together with razor-sharp analysis of our healthcare system’s “save the patient at all cost” style of medicine.
I spoke with Butler recently about the book; an edited transcript of our conversation is at Reuters Money.
Photo: Cristina Taccone