I have been waiting a long time to read this book.
Katy Butler first came to my attention when I read 2010 New York Times Magazine piece called “What Broke My Father’s Heart,” a look at medical interventions and our path to death. In the article, Butler told the story of her father’s life after a severe stroke, focusing on the way that a medical culture of over-treatment extended his life well past the point where most people would consider his quality of life good. The major event was fitting Butler’s father with a pacemaker as a condition of a doctor completing a relatively simple surgery. The pacemaker kept his heart beating even as his mind and the rest of his body began to fail.
The article was beautiful, sad, and frustrating. It also led to some really interesting conversations with my dad, a design engineer with a major medical device company. He had a different perspective on the issues that Butler raised and helped provide a different side to this story. I brought even more baggage to this boook because of my grandfather’s death last summer. Our family’s experience with a medical emergency and the reality of making end-of-life decisions for him gave me a new frame for the issues that Butler raised in her article.
By the time I got my hands on a review copy of Knocking on Heaven’s Door: The Path to a Better Way of Death, this summer, a memoir based on the 2010 article, I was excited and curious to see how Butler would expand and reframe a situation that had already given me so much to think about. Happily, Knocking on Heaven’s Door did not disappoint me in the slightest:
Like so many of us, award-winning writer Katy Butler always assumed her aging parents would experience healthy, active retirements before dying peacefully at home. Then her father suffered a stroke that left him incapable of easily finishing a sentence or showering without assistance. Her mother was thrust into full-time caregiving, and Katy became one of the 24 million Americans who help care for aging parents. In an effort to correct a minor and non–life threatening heart arrhythmia, doctors outfitted her father with a pacemaker. The device kept his heart beating but did nothing to prevent his slide into dementia, incontinence, near-muteness, and misery. After several years, he asked his wife for help, telling her, “I am living too long.”
When doctors refused to disable the pacemaker, sentencing her father to a protracted and agonizing death, Katy set out to understand why. Her quest had barely begun when her mother faced her own illness, rebelled against her doctors, refused open-heart surgery, and instead met death head-on. Knocking on Heaven’s Door, a revolutionary blend of memoir and investigative reporting, is the fruit of the Butler family’s journey.
There are so many things to say about this book, but I think the most important is that Butler gives a voice to the feeling that there is more to medicine than just extending life. As we age, each intervention takes its toll, and the costs of those interventions don’t always match their ostensible benefits. For example, Medicare spent about $30,000 on Butler’s father’s early interventions — the stroke, the pacemaker, and a hernia surgery — but only $7,300 in total on speech therapy. In the grand scheme of things, Butler argues the speech therapy did more to contribute to quality of life than the most expensive interventions, but our medical system isn’t set up to support those treatments fully.
Although it seems, to the best of my estimation, that this book is impeccably researched, you can definitely feel the understandable sense of outrage and frustration that Butler still feels about the way her father’s life ended. It sort of simmers beneath the surface of many of her stories in a way that will feel familiar to anyone who has helped an elderly relative navigate end of life care and the medical establishment. Her outrage gives the numbers and investigating the personal touch that makes it stick.
Knocking on Heaven’s Door is really an incredible piece of work that I can’t recommend highly enough, especially for people who anticipate caring for a relative in the near future. The difficult situation that Butler’s family faced can offer some instructive lessons for the rest of us and important issues to think about as we try to fix the American medical system.
From Bloggers’ Recommend: After a stroke, journalist Butler’s 80-year-old father was given a pacemaker, which kept his heart pumping while his mind and body shut down, impeding his natural death. Butler looks at the personal toll of a medical system incentivized to treat patients at any cost. With frustration and love, Butler exposes her family’s struggle to help her father die with dignity.