I’ve been a big fan of Atul Gawande ever since I read Complications, which is still one of my favorite books. Gawande is a surgeon at Brigham and Women’s Hospital in Boston, a professor at Harvard Medical School and the Harvard School of Public Health. He’s also an acclaimed writer who welcomes his reader into his personal exploration of the assumptions he brought in to his surgical practice and where those assumptions have fallen short. I enjoy Gawande’s skills as a writer and an observer, and I deeply respect his capacity for introspection, honest self-critique, and his willingness to take on medical orthodoxy even when (especially when) it’s uncomfortable.
Complications hooked me from the first page and helped me understand surgery, and the fallibility of surgeons, in a new way. I also devoured The Checklist Manifesto, which, while not nearly as enthralling as Complications, was so overwhelmingly useful that I couldn’t put it down. It explains, among other things, why they ask you seemingly stupid questions before operations (“which leg are we operating on today?” answer: because when they don’t ask this they often end up amputating or reconstructing the wrong legs) and why commercial flying is safer than driving (hint: checklists!).
I downloaded a free sample of Atul Gawande’s newest book, Being Mortal: Medicine and What Matters Most in the End, weeks ago, but I’d hesitated to start it because, on some level, I wanted to shy away from the topic. Who wants to read a book about end of life care? Then last week a friend told me how profoundly the book had changed his thinking, and that I had to read it. I started reading it on Friday and I’d finished it by Sunday.
Being Mortal confronts head-on a reality that we all will face: how we manage dying and death, for ourselves and our loved ones. No, it’s not a fun topic, but it is a singularly universal topic, and I’m convinced that without reading this book we will not face death well.
The basic premise of the book is that, in the West, where families have become nuclear (rather than extended), illness, dying and death have been turned over to medical professionals and to end-of-life facilities, both of which are designed to treat illness and prioritize safety rather than care for people. This is why more than 85% of people in the US died in hospitals, not at home, in the 1990s; why we sign on for third-line chemotherapy treatments that have miniscule chances of success and very likely to worsen quality of life; and why we are surprised to learn that high-quality hospice care not only increases the quality of life, it often ends up extending life as well.
In summarizing his findings, Gawande argues:
I am leery of suggesting the idea that endings are controllable. No one ever really has control. Physics and biology and accident ultimately have their way in our lives. But the point is we are not helpless either. Courage is the strength to recognize both realities. We have room to act, to shape our stories, though as time goes on it is within narrower and narrower confines. A few conclusions become clear when we understand this: that our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.
The story gets very personal at times, as Gawande weaves in the details of his own father’s illness and death. He shares the excruciating choices that his father, his mother, and he had to make in the years following the discovery of his father’s rare spinal cancer; the important conversations they all had while navigating the nearly impossible decisions of whether and when to operate, and what sort of care to get in service of his fathers’ well-being and his father’s health in the years leading up to his death.
The book is both moving and overwhelmingly practical. It presents stories and facts and analysis and also gives us the tools to manage our own confrontation with serious illness and death. Most powerful, to me, are Gawande’s guidelines for the conversations we need to have when someone is very sick and near death. They must follow, in Gawande’s estimation, a clear path:
Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?
These questions are powerful because they put the sick and dying person back in the driver’s seat, not just as someone making choices from an array of medical interventions – interventions that are, customarily, described incorrectly (doctors consistently overestimate the likelihood of success and consistently underplay risks to patients) – but as someone who knows best what they value in their own lives. It is these conversations that empower real choices and ensure self-determination even in the midst of declining physical and mental well-being.
The book is both sobering and empowering, giving us the tools to confront some of our most challenging moments with dignity. Gawande concludes with a simple reframing: “We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive.”
I’ll be evangelizing this book for a while, to anyone who will listen – not because it’s a fun read or a good one, but because it’s real and because we are failing ourselves and our loved ones by handing over some of the most important decisions in our lives to professionals who are neither trained nor equipped to answer them without us.