Interview by Jesse Duthrie
On a Tuesday night last October, I picked Katy Butler and her partner, Brian, up at Logan International Airport. We packed into my car and drove an hour and a half to the University of New Hampshire, where Katy would spend the next two days working with graduate students on the craft of narrative nonfiction and read from her book, Knocking on Heaven’s Door: The Path to a Better Way of Death. As we made the trip, Katy and I discussed a slew of topics, from the upcoming November elections to Eastern philosophy. More importantly, we discussed the American health care system, one of the many subjects investigated within her memoir. Although she had just flown across the country, Katy still took an excited interest in discussing small details of this complicated, imperfect machine. In the brief drive to Durham, I came to see Katy not only as a wellspring of knowledge, but also as a writer who cared immeasurably about her topic.
Katy Butler’s first book, Knocking on Heaven’s Door: The Path to a Better Way of Death, was published in 2013 by Simon & Schuster. It was a New York Times bestseller and was voted by the Times as “one of the ten best memoirs of 2013.” Katy began her career as a staff writer for the San Francisco Chronicle. She went on to write for such publications as The New Yorker, The New York Times, The Washington Post, and Mother Jones. Her writing has been selected for Best American Essays, Best Buddhist Writing, and Best American Science Writing.
Barnstorm recently connected with Katy to discuss her earliest days as a writer, the journey of crafting her first book, and the insight she’s gained into the American health system.
B: You worked as a journalist for the San Francisco Chronicle for twelve years. Can you tell us a little about that experience, the types of stories you covered over those years, and how that experience prepared you for writing this book?
KB: I started out like most young reporters: sitting in the police station ‘til one a.m. covering the "night police" beat, writing up fires, obits, and stories that ran on page forty. I ended up specializing in long reported features on major social issues like the gentrification of San Francisco as well-educated gay and single people from elsewhere renovated homes in what had been traditionally black neighborhoods; the AIDS crisis; escalating health care costs (way back in the Eighties); and even the right to die movement.
It prepared me for this book in two ways: 1) I'd come out of the liberal alternative press, where opinion was understood to be part of the mix. At the Chronicle, I had to learn to keep my blatant opinions out of what I wrote. That forced me to observe and report details and build up powerful scenes that made a point without hitting people over the head. (In my opinion, every writer has a point of view, and they're all partial; there's no such thing as a godlike all-seeing of the "truth.") And 2) I spent six weeks observing decision-making in an intensive care unit in the 1980s, and I was appalled by what I saw. Even then, we were using medical technology, such as ventilators, to keep people alive when death would have been a blessing. Beautiful elderly people who were demented and miserable or whose lungs had been destroyed by emphysema. My gut told me something was really, really wrong with our approach to death. But I didn't understand, back then, the economics that shape the end of life.
B: Knocking on Heaven's Door covers a lot of medical and science reporting: the history of the pacemaker, the systemic problems in the American health system, the biological effects of dementia and strokes. Can you tell readers a little bit about the content gathering process for this book?
KB: For the family side of the narrative, I read or reread my journals, family letters, and my parents' Medicare and medical records. I roughed out a timeline, year-by-year and month-by-month, tracing my father's decline. I picked the major turning points and medical decisions. Then I tried to understand how Medicare's reimbursement structure had impinged on our seemingly private lives. I discovered, for example, that Congress had forced Medicare to limit my Dad to $1,500 a year in speech therapy, but Medicare paid $12,000 at the snap of a finger for his pacemaker, which probably should never have been put in at all. Medicare would have paid the family doctor only $64 to discuss that hugely important decision. And I wondered why.
Meanwhile, I researched the big picture. I started with some highly specialized books, like "Machines in Our Hearts," by Kirk Jeffrey, a business and technological history of the highly profitable pacemaker and other cardiac devices. A light bulb went off. I read books on dementia and tuberculosis and health policy, and I called up the authors and interviewed them. I also went to health policy experts, like The Dartmouth Atlas of Health Care, a research group in New Hampshire, told them my father's story and asked them to explain what it revealed about American medicine. I read "Republic Lost" by Lawrence Lessig, a devastating account of Washington lobbying and its influence on public policy. On the Internet, I Googled "St. Jude Medical," which made my father's pacemaker, went hunting for smoking guns and scandals, and found them in the form of whistleblower suits against medical device companies -- then I called the lawyers for the whistleblowers and got sent the legal documents. I found oral history archives in Minneapolis, Minnesota, the cradle of the medical device industry. On every subject, I read widely in the New York Times, which is a national treasure. Their health care reporting alone is worthy of a Pulitzer every year. I confirmed the accuracy of what other reporters had already found and connected dots that can't be connected when you are writing daily newspaper stories.
B: What made this book powerful for me was reading about your family and putting a face to the large, systemic problems in our nation's health care system. From a writer’s perspective, what was the process of shaping these family members as characters? How did you decide what to include and what to leave out?
KB: I did not want to insult either my living or my dead family members. I described the living ones -- my brothers -- in terms of their most positive characteristics and left out facts that invaded their privacy. I primarily focused on the relationship between my parents and me and kept my brothers' roles to a minimum. It was important, however, to say that I did a great deal more caregiving than either of my brothers, and I resented that and sometimes pushed them to do more. It's often daughters who carry most of the load. So, that was an important part of the story.
In my first draft, I was more self-justifying. In the second and third drafts, I thought more about the positive contributions my brothers had made and the very practical reasons that I was able to do more than they were. I was a freelancer, so my hours were flexible, and I was in the best economic position of the three of us.
I could, of course, have written more about my grievances against my parents from childhood on and their shortcomings. Who couldn't?
But that wasn't what this book was about. It wasn't a coming-of-age novel like Dickens's Great Expectations, or a leaving-home novel, or an account of surviving a rotten childhood like The Glass Castle. As Mary Karr, the author of Lit and The Liar's Club says, really great memoirs are not about "when I was a kid my mother hit me on the head with a brick over and over again." They're about the transformation of the soul through time and experience.
I wanted this to be a book about love. I wanted to focus the narrative on how I grew as a human being through the spiritual ordeal of caring for my parents over eight years. I became less selfish, less full of grievances, more giving, more self-confident, and braver about expressing love. My mother transformed as well. She became less of a perfectionist, more humble, and far more appreciative of who I really was rather than who she'd wanted me to be. I wanted to focus on that redemption without turning this into a sentimental narrative. I didn't want to gloss over the realities of dementia or how nonstop caregiving corroded my mother's soul in horrifying ways. And, of course, the overriding focus was on a question our culture doesn't want to address: What are the human and financial costs of our one-sided pursuit of maximum longevity because we are afraid to talk about, face, or think about death? The family narrative had to address this, too.
B: As a reader, I learned people are unprepared for death (both of themselves and of their family members), especially in a health care environment that seems to assume prolonging life is always the best medical option. Your book, while telling an emotional personal story, also serves as powerful testimony against "slow death." When did you decide to step in and become an advocate for this cause, and how did it change the storytelling process?
KB: When I wrote the two chapters that end the book, I had to step out of the dispassionate witness role and give advice. It was a new role for me. After the book was published, I felt the world was calling me to be of service. That meant understanding that the mission of the book was not just to be a beautiful piece of writing or memorialize my parents, but to empower readers to take back their moral authority from a fragmented medical system and make their own choices in order to live and die on their own terms.
B: From a finished manuscript perspective, how do you decide as a writer (and as an editor of your own work) what is relevant and what needs to be cut?
KB: When you read it aloud and people look bored. I still wish I had cut more.
B: Finally, if you could have readers take one thing away from Knocking on Heaven's Door, what would it be?
KB: The medical system is broken, especially at the end of life. Listen to your gut, take back your moral authority, and make your own choices. There will always be another treatment, until you say no.
Photo courtesy of Katy Butler.