For anyone still harboring an illusion that a longer life is a better one, Katy Butlers story about the last six years of her fathers life after a devastating stroke will quickly disabuse you of the notion. A casually installed pacemaker before a routine surgery kept Jeffrey Butlers heart beating long past the point where he could see, speak or think clearly. Thanks to modern medicines insistence on prolonging life at any cost, Butlers body essentially outlived his brain.
A charismatic retired Wesleyan professor who once dispatched his three young children to bed by quoting Horatios farewell to Hamlet May flights of angels sing thee to thy rest! Jeffrey Butler still had some hopes of recovery after a catastrophic stroke in November 2001 at age 79. Instead, a series of smaller strokes propelled him into dementia, ill health and incontinence while the pacemaker prevented the most likely and humane pathway to death.
Butler writes: It would take me more than a year to realize that my father had walked through the invisible gate that separates the autumn of healthy old age from the hidden winter of prolonged and attenuated dying.
Joining the army of 24 million sons and daughters who help care for their aging parents in this country, Butler found herself on a roller-coaster ride of cross-country plane trips, phone calls to doctors and caregivers, and incessant guilt over never doing enough. Clashing frequently with her critical, exacting mother, Butler helps her hire a part-time caretaker and exchanges loving notes with her father, even as his words grew heartbreakingly rudimentary.
Despite her best efforts, her parents lives continue to unravel. Exhausted and demoralized, her mother, Valerie Butler, buckles under the strain and, in 2007, asked Butler to help her get Jeffreys pacemaker turned off.
Mother and daughter then enter a Kafkaesque world of lawsuit-phobic doctors who insist they get a court order and ultimately refuse to help them.
Butler, who lives in Mill Valley, Calif., and has written about neuroscience and medicine for several publications, uses her impressive reportorial talents to trace the social, scientific and economic forces that have led to our byzantine and inhumane approach to death.
Butlers end-of-life statistics are chilling. Three quarters of Americans say they want to die at home, but only a quarter do. Two-fifths of all deaths now take place in a hospital and a fifth happen in ICUs.
Having convincingly shown how few of us will die the deaths we envision for ourselves, Butler ends her treatise with a step-by-step guide for negotiating treacherous end-of-life waters. But Knocking on Heavens Door is more than just a guide to dying, or a personal story of a difficult death: It is a lyrical meditation on death written with extraordinary beauty and sensitivity.