Katy Butler was living in Mill Valley, pursuing a successful freelance writing career, when she got the call we all dread: her father, a successful, dynamic 79-year-old retired Wesleyan professor, had had a debilitating stroke.
Butler flew back to Middletown, Conn. and unknowingly entered into an nine-year medical and moral odyssey that would bewilder and perplex her – how to care for her aging parents and help them die peacefully. It didn’t happen with her father, but it did with her mother.
Butler’s book on her parents, Knocking on Heaven’s Door: The Path to a Better Way of Death was just published this week and has already gotten rave reviews. Abraham Verghese wrote in the New York Times that the book was “a compelling mix of personal narrative and hard-nosed reporting.”
About 24 million Americans are currently helping care for aging parents and grandparents, part of what Butler calls the “the rollaboard generation” for the suitcases they bring on airlines as they shuttle between their homes and their families. Modern technology is helping people live longer, but not always better, stretching out death in ways few imagined when modern medicine made significant advances after the end of World War II. Butler explores the double-edged blessings of modern medicine in Knocking on Heaven’s Door.
Butler, a former Berkeley resident, is an award-winning science writer whose work has appeared in the New York Times, the Wall Street Journal, and the New Yorker. She will be appearing at Berkeley Arts and Letters at 7:30 p.m. Thursday Sept. 12 at the Hillside Club at 2286 Cedar St. in Berkeley. She will be talking about her book with Deirdre English, an author and a lecturer at the UC Berkeley School of Journalism.
Berkeleyside caught up with Butler to ask about her parents and her book:
Berkeleyside: Katy, tell us a bit about your father.
KATY BUTLER: His name was Jeffrey Butler and he never gave up easily on anything. He was born in South Africa and lost his left arm in World War II. He went on to earn a Ph.D. from Oxford, teach history at Wesleyan University, coach rugby and…to my amazement…build floor-to-ceiling bookcases for our living room. He loved my mother and he lived a long, full, and meaningful life.
Berkeleyside And his death?
BUTLER: He died slowly over the course of five years, an increasingly common pathway that nurses call “the dwindles.” And he’s not alone. Thanks to a panoply of lifesaving inventions, the “oldest old” are the nation’s most rapidly growing age group. They’re not necessarily living longer because they’re healthier. Half need help with daily activities like making breakfast, and a third have dementia. My father, for example, was healthy and vigorous until a stroke crippled him at age 79. A year later, doctors gave him a pacemaker with almost no family discussion. That kept his heart going while doing nothing to prevent his decline into dementia and near-blindness. He lived into a time when death would have been a blessing, not a curse.
Berkeleyside: Why did your family go ahead with the pacemaker?
BUTLER: It seemed like a no-brainer at the time. He needed hernia surgery, and because he had a slow heartbeat, and the cardiologist refused to clear him until he got a pacemaker. Case closed. There was no discussion of alternatives – and in the course of researching the book, I learned that there were some. The doctor’s narrow vision dovetailed with my mother’s unexamined hopes that my father would recover completely from his stroke. (My father could barely speak then and deferred the medical decision to her.) Our family’s ignorance of medicine and fear of death collided with medicine’s default mode —maximum longevity and maximum treatment, without considering quality of life. My mother got more consumer information when she bought a new Camry.
Berkeleyside: What was the quality of your father’s life afterwards?
BUTLER: The pacemaker allowed my father’s heart to outlive his mind. It was heartbreaking to watch his growing helplessness, and it sentenced my mother to seven years of nonstop care giving, with very little social or government support. Our medical system is biased towards “cure” not “care.” The pacemaker and the hernia surgery cost Medicare $22,000. But it paid only $1500 a year for speech therapy, and paid for very little home nursing care.
Berkeleyside: You and your mother later struggled to have the pacemaker disabled.
BUTLER: Yes, and the cardiologist regarded us as moral monsters. Even though my father had a living will and had appointed my mother and me as his medical proxies, the documents didn’t mention dementia or tiny life support devices like pacemakers. I later learned we had the legal right to get the device disabled – but that didn’t translate into practical medical autonomy. And being a journalist, I couldn’t rest until I understood why.
BUTLER: I discovered that until the 1900s, people died randomly throughout the lifespan. Then came vaccines and antibiotics and in the 1960s, dialysis, pacemakers, respirators, CPR and the 911 system – a whole panoply of mixed-blessing devices that erased the bright line between saving a life and prolonging a dying. Death was medicalized, families lost control, and dying was moved into the hospital and transformed from a spiritual ordeal to a technological flail.
BUTLER: We under-fund hospice and make it far too difficult to enter. We over-fund high-tech fixes. The doctor who recommends yet another round of pointless chemotherapy costing thousands of dollars will earn 6% of the cost of the drug from Medicare. If that same doctor sits with the patient’s family for an hour or two of honest conversation about quality of life, drawbacks and alternatives, and recommends hospice care, he or she will earn virtually nothing. Our medical system rewards practitioners for over-treating —doing the wrong thing —and financially punishes doctors who take the time to talk compassionately, realistically and honestly about medicine’s limits.
We need a groundswell, grassroots movement of caregivers to transform how medicine approaches the end of life. There’s a growing movement called Slow Medicine, urging we fund doctors better for their time and less well for inappropriately aggressive Hail Mary surgeries near the end of life. And we, as a culture, have to keep openly questioning how, when, and whether medical advances serve us appropriately. We have to to talk openly and honestly about medical ethics, and our own moral standards, in light of the ever-increasing ability to preserve life beyond its natural limit.
Berkeleyside: How did your mother die?
BUTLER: She saw what happened to my father, and chose a different path. She turned down open-heart surgery when she was 84, because of the real and underplayed risks of stroke and cognitive decline. She knew that without surgery she had a 50-50 chance of dying within two years. That gave her time to face her death. She cleaned out the basement and did her best to reconcile with all her children. I got a chance to tell her I loved her, and she told me to cherish my partner, Brian, and to give her sewing machine to a woman who really sewed! She took back her moral authority from the medical system and died on a hospice unit five months later.
I want to make clear, though, that this is not just a book about death. It’s about love, death, and redemption. I wanted it to read like a novel, a novel about things that really happened. I was a childless careerist California baby-boomer when my father had his stroke and our family’s life turned upside. Knocking on Heaven’s Door describes how my heart opened when I found myself drawn —compelled really, by love and moral obligation— to become my parents’ caregiver. I don’t want to glamorize this: my income dropped in half and I went through nine years of sleepless nights and cross-country flights and hiring home health workers long-distance off the Hartford, Connecticut Craigslist. But I had the chance to write my father love letters thanking him for all he had done for me, and the short letters he labored over in return are among my most cherished possessions. I see care-giving as a spiritual ordeal. It breaks some people. But it matured me and allowed everyone in my family some late-life redemption. My parents’ deaths taught me a great deal — about trusting my intuitions, and feeling and expressing love. They taught me how to live.
Get tickets to see Katy Butler at Berkeley Arts & Letters on Thursday Sept. 12.
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