By Katy Butler – Scribner, 2013
In this honest mix of memoir and research, Katy Butler shares her family’s experience of illness and death in hopes that we can reclaim caregiving and dying from a broken health system. Butler’s father, Jeffrey, a World War II survivor and academic, suffers a massive stroke, followed by a pacemaker implantation—a hasty decision that will haunt the family for five years as his descent into dementia takes a devastating toll on Butler’s mother’s health. Butler lives across the country and finds herself part of the “roll-aboard generation” of adult children who spend years caregiving via plane and phone. When doctors deny her request to turn off the pacemaker, Butler struggles to navigate a health system designed around reimbursement and life-saving measures rather than quality of life and patient-centered care. An instruction manual for creating a good death, Heaven’s Door deserves serious attention not only from each of us but the entire US medical community.