Katy Butler ’71 . (Photo by Cristina Taccone)
In Knocking on Heaven’s Door: The Path to a Better Way of Death, a New York Times Notable Book of 2013, award-winning journalist Katy Butler ’71 recounted shepherding her parents, Professor Emeritus of History Jeffrey Butler and artist Valerie Butler, through their final illnesses. When Katy’s father suffered a stroke and later was given a pacemaker, the family had no idea that the device would extend his physical life years past his cognitive ability to enjoy it or to function independently. After his death, Katy’s mother declined open heart surgery and chose instead to meet her own death head-on. From this experience Katy Butler presents her provocative thesis: Modern medicine, if allowed a single-minded focus on maximum longevity, will often create more suffering than it prevents. She has spoken on improving doctor-patient communication at Harvard Medical School and numerous hospitals around the country. Her upcoming book is The Art of Dying Well: a Practical Guide to a Good End of Life (Scribner, Jan. 2019).
In this Q&A, which ran in the May 2018 issue of Wesleyan Magazine, Butler discusses health care, modern medicine, Medicare, and more.
Q: How would you characterize the American health care system?
A: Absolutely brilliant with fixable problems—infectious diseases, drug overdoses, car accidents—where throwing many tests and treatments at someone has tremendous results. But when confronted by complex health problems that aren’t amenable to a quick fix, this kind of “fast medicine” can be pretty disastrous.
Q: Why is this?
A: Our insurance system, known as fee-for-service, pays physicians on a piecework basis—for volume, not quality. We don’t reward them financially for taking extra time with a patient who has multiple problems that need to be managed but can’t be fixed—the kind of problems that redouble as people get older.
Q: How would we judge quality in health care?
A: Quality should be defined as actually improving the patient’s life. Traditionally, medicine’s goals have been to improve function, to relieve suffering, and to prolong life. Currently, the hyper focus within medicine is on prolonging life—which also happens to be the best-compensated option. We rate surgeons on whether a patient survives for 30 days after surgery; but we don’t track whether that patient—especially an older, fragile patient—ends up so disabled by the stress that they have to move to a nursing home. And that happens quite a bit.
Q: Why do we not discuss these concerns with our doctors?
A: The communication between doctors and patients around end-of-life questions is absolutely terrible. It’s almost as if we need a foreign-language phrase book. For instance, if the doctor says, “I want to talk to you about your goals of care,” the patient might well not understand that the doctor is probably saying: “The time you have ahead of you appears to be limited, and, given that, how do you want to spend your time? Do you want to take a trip, or see a child graduate? Can medicine help you achieve this? And, if not, what are some achievable goals?” Patients can be equally tongue-tied about what matters most to them.
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