I won’t sugarcoat it: if you’re looking for a fun, lighthearted read, this is not the book for you. However, if you’re interested in how our society and medical community treat end-of-life decisions in the 21st century, Katy Butler’s remarkable Knocking on Heaven’s Door is enlightening, heartbreaking and, at times, enraging.
Butler is a journalist and brings an investigative depth to her book, digging into the history of everything from pacemakers to Medicare reimbursements (and the way the development of the latter helped drive the growth of the former). But this book is also personal for her, recounting her experiences dealing with the illnesses and deaths of her own parents. It’s this effective mix of hard facts coupled with understandable emotion that makes this sometimes-harrowing book so readable and relatable.
Butler’s father was a relatively healthy 79-year-old in the fall of 2001 when he suffered a serious stroke. Following this incident would be six and a half years of decline, including dementia, near-blindness, and increasing frailty. Thanks to a pacemaker inserted about a year after the stroke, though, Butler’s father’s heart kept beating even as the rest of his body and mind edged ever closer to the end. Unsettling questions about the necessity of the pacemaker would haunt Butler and her mother, as they watched the deterioration and eventual virtual disappearance of the smart, vivacious man they loved.
At its heart, really, this book asks, just because technology has developed to the point where we can keep someone alive, should we? Just because it’s possible, does that mean it’s right? Where do questions about quality of life play into this? Who speaks up for patients who can no longer speak up for themselves? Butler’s father was clearly suffering for years, and yet his pacemaker kept his heart beating, likely for much longer than it would have without it.
As with just about anything else, it helps to follow the money and uncover the incentives, and Butler does this in great detail. For instance, she points out that “between 1998 and 2011, pharmaceutical companies and makers of health products spent $2.3 billion on lobbying, making them the single biggest influencer of members of Congress.” The financial incentives for keeping people alive for as long as possible are eye opening and far-reaching, permeating throughout all layers of medicine.
This book’s a cautionary tale, written by a loving daughter who hated watching her infirm father suffer through his final years, and wondered if there’s a better way. For those brave enough, it’s an immensely educational, valuable read.
(Originally published here: http://msbusiness.com/blog/2014/09/24/book-biz-embracing-different-approach-end-life-care/)