Modern medicine keeps us healthy and alive longer now than any time in human history. But when an older person nears death, most medical professionals fail when dealing with a patient’s human needs and do more harm than good.
This is the grim conclusion of Atul Gawande, a noted surgeon and keen observer, whose new book Being Mortal will send a shiver through anyone who would like to face old age with dignity intact and their wishes honored.
“The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit,” he writes. Too many people spend their last days in nursing homes and intensive care units, “cut off from all the things that matter to us in life.”
Gawande admits that he has taken the route of many doctors. He once touted an experimental treatment he suspected was “sheer fantasy” to a terminal patient with multiple cancers, rather than talking about her preferences and fears toward the end of life.
“Discussing a fantasy was easier — less emotional, less explosive, less prone to misunderstanding — than discussing what was happening before my eyes,” he recalls.
The good news is that medical professionals are slowly changing. What elevates Being Mortal beyond being a mere a litany of complaints about how hospitals and nursing homes treat people is Gawande’s reporting on different approaches —– and the positive results of humane care.
He describes new forms of assisted living for the disabled and frail, with greater privacy and autonomy. He profiles Bill Thomas, a nursing home pioneer in upstate New York who introduced plants, animals and even children to an institution. The result: Psychotropic drug prescriptions for agitation dropped sharply. Boredom and loneliness were alleviated.
Several studies of Medicare patients with terminal cancer or end-stage heart failure found that those who entered hospice care, forgoing hospital treatments, had no difference in survival rates compared to those who received such treatment. In the cases of lung cancer and heart failure, patients in hospice care actually lived longer, with much less suffering.
End-of-life discussions have also had measurable benefits for patients and their families, several studies show. Gawande acknowledges that conversations about mortality can be difficult, and that doctors need training. A family meeting is a procedure that requires no less skill than an operation, one geriatrician tells the author.
Words matter. “What do you want when you are dying?” is not as good as “If time becomes short, what is important to you?”
Answers to that question are as varied as the individuals. Jewell Douglass, one of Gawande’s patients, decides to take a plane trip to walk on a beach and see friends instead of going through another round of chemotherapy. Another cancer patient, Peg Bachelder — his daughter’s beloved piano teacher — leaves the hospital for hospice care at home so she can teach her students a few more times.
These patients are much more than nameless case studies. Gawande’s story of his proud father, also a physician, and how he navigates his last years, gives Being Mortal a special poignancy. The author shares doubts about his father’s decisions, recounts family debates about what to do and expresses his deep frustrations with medical professionals who don’t listen to a patient’s wishes.
Gawande finds that many older patients have priorities that go beyond safety and a longer life. Even the frail want some measure of control, “to retain the autonomy — and freedom — to be the authors of our lives. This is the very marrow of being human.”
Many skilled clinicians, trained to fix purely medical problems, will find have difficulty focusing on the human needs of their patients and helping them confront mortality. But the rewards, the author finds, can be profound if they listen and learn: “I never expected that among the most meaningful experiences I’d have as a doctor — and really, as a human being — would come from helping others deal with what medicine cannot do as well as what it can do.”
This book is an eloquent, heartfelt cry for change. We can only hope it opens a few eyes.
Frank Davies is a writer and editor in northern Virginia.