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Key points
- This highly readable book offers remarkable insight into how we should live as we face our death.
- Families, caregivers, and doctors often avoid frank discussions of death. Atul Gawande seeks to change that.
- Ten years after publication, the book remains as relevant as ever. Perhaps more so.
I read Being Mortal by Atul Gawande when it was first published in 2014 and haven’t stopped talking about it. It shot to the top of my list as one of the most important books I’ve ever read. After 10 years, I read it again to see if it held up. It did. I was as entranced the second time as the first—even more so because, as it happens, I am also now 10 years older.
Gawande is a gifted storyteller, having won two National Magazine Awards for his work in The New Yorker; he has been awarded a MacArthur Fellowship. In his spare time, he is a professor at the Harvard Medical School and the Harvard School of Public Health.
Like most doctors, Gawande was focused on helping his patients overcome their diseases and disabilities. He knew some wouldn't survive, but he wasn't trained to cope with the truth of mortality. To a doctor, a patient’s death can mean failure.
This book chronicles how all that changed for Gawande.
How Do We Face Problems Doctors Cannot Fix?
When he began noticing a disconnect between his goals and those of his patients who were facing the end of their lives, Gawande decided to retrain himself. He began to acknowledge that, in some circumstances, he needed to focus less on trying to save a life and more on making that life more livable.
He asks, “What does it mean to be good at taking care of people whose problems we cannot fix?” And then he makes it his mission to find out.
He enlists the help of gerontologists and end-of-life experts to teach him what to do when it becomes clear that medicine does not have a cure. And he learns that the job of a doctor should be to treat the person, not just the disease. That approach, however, often runs contrary to years of medical training with an emphasis on saving lives, not on helping patients live them.
Gawande gets to know the people he treats—their backgrounds, personalities, and aspirations—and he takes time as a writer to make them real to the reader. Many of them are coming to understand that medical science has no cure for them—although, he explains, most still hope a miracle might be out there somewhere. As does he.
How Would You Define the Minimum for a Full Life?
In one of the most intriguing parts of the book, he delves into where and how we expect people to live when they become frail. We often institutionalize people unnecessarily, he says, in nursing homes and assisted living facilities where they linger in wheelchairs watching hours of Wheel of Fortune. These facilities are too often designed to fulfill the needs of the medical staff, not the patients, with a laser focus on safety.
There are better options, and he shows us many of them. There’s a nursing home in New York State that provides animals for patients to care for and has a children’s playground on site for a jolt of energy. And others throughout the country are designed to look and work like homes, not hospitals. Hospice has become a life-affirming option for those with terminal illnesses.
But he also shows us that many well-intentioned plans have gone off the rails because of institutional rules and economic gain. The concept of assisted living, for example, was devised as a way for the frail and the ill to retain a sense of independence and privacy. The first such facility had doors that locked and allowed residents to drink wine, gorge on M&Ms, and sleep as late as they wanted. Eventually, though, concerns of safety overcame thoughts of livability, and soon, the doors were open to whoever wanted to walk in whenever. The M&Ms and wine were ditched. Residents were expected to wake up at the convenience of the staff. Now, many of the elderly and infirm in institutions are safe but miserable.
Is this the life we want for them? It’s not the life they want.
If we want to ensure that our loved ones—and, eventually, us—end our lives on our own terms, Gawande says, we need to start listening. What gives our specific lives meaning? In one instance, a man is facing a serious operation during which the doctors will have to decide if they continue with extreme life-saving procedures or if they stop. Before the surgery, the man is asked to name what would make his life worth living. He responds that he wants to be able to watch football and eat chocolate ice cream. That, then, becomes the doctors’ criteria. If the patient can have those two things, his life has meaning. If treatment takes that away, treatment needs to stop.
Among the research Gawande presents is the coping with cancer study that followed patients who chose to enroll in hospice rather than have advanced treatment. “They suffered less, were physically more capable, and were better able, for a longer period, to interact with others,” he writes.
As the book progresses, Gawande’s beloved father, also a doctor, is diagnosed with cancer that defies treatment. He ultimately chooses to let his cancer progress naturally, allowing him to continue interacting with others, including hosting dinners for friends and colleagues. He knows he’s dying, but he’s not dead yet.
This book truly changed my perspective on living and dying. Should I have a life-ending illness, I can clarify my goals with my family. I want to continue to read, write, and visit with family and friends. If treatment takes that away from me, I don't want it. My husband and I both have living wills, making our end-of-life wishes clear.
This is not a how-to book. Gawande shows us the problem and how some patients and families cope, but he leaves our decisions up to us.
NOTE: You can watch Gawande’s story in the PBS Frontline episode titled Being Mortal, where you’ll meet him and some of the patients he introduces in the book, including his father.
Copyright: Patricia Prijatel 2024
