I first read Being Mortal: Medicine and What Matters in the End five years ago, when I was a hospital chaplain in Denver. The book is by Dr. Atul Gawande, who practices general and endocrine surgery at Brigham and Women’s Hospital in Boston. I even know some of the doctors who Gawande writes about — doctors who want to be honest and empathize with families about their dying loved ones.
I loved this book then — and I love it even more now. Five years after reading the book, I’m a hospice chaplain and am constantly surrounded by the intergenerational work of families and friends who ask many of the questions Gawande learned to ask in his surgical medical practice about end-of-life wishes. I work in the homes of people who are in hospice — the expectation is that the patients we care for will die within six months.
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I used to think that the toughest end-of-life conversation for families was signing the hospice admission forms. Thanks to Being Mortal, I now understand that there are many tough decisions about end-of-life care that occur well before a patient enters hospice.
Gawande spends the bulk of this book retelling his patients’ stories and how end-of-life medical care has worked in the last century. He writes about the horrific care available for the elderly in the U.S. and Europe in the past. In the middle part of the 20th century, medicine changed rapidly and hospitals transformed from a “symbol of sickness and despondency to a place of hope and cure. Communities couldn’t build hospitals fast enough.”
Gawande believes he failed his own patients when he didn’t ask what living life meant to them as they battled life-ending diseases. He retells moving, compassionate patient stories and intertwines his Indian grandfather’s end-of-life story and his father’s long struggle with his own terminal illness.
Gawande writes in his introduction that this is a book about the “modern experience of mortality — about what it’s like to be creatures who age and die.” He discusses how medicine has changed the experience — and how it hasn’t — and where our ideas about how to deal with our finitude have it wrong.
Gawande says that he’s witnessed how medicine fails terminal patients. “Mortality can be a treacherous subject,” he says. “Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need.”
Old age has changed. Nowadays, elderly people don’t usually live in the same towns where their families live — and they’re also more independent. “Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. It is as inevitable as sunset,” he says.
He writes that most people don’t prepare for declining independence and he challenges the very structure of assisted living facilities and nursing homes, that these facilities are not what these institutions originally intended for elder care in the U.S. He says, they “manage to perpetuate conditions that treat the elderly like preschool children.”
The last third of Being Mortal is almost exclusively about Gawande’s own changing practice. He asks, “When should we try to fix and when should we not?”
Gawande says that people with serious illnesses have priorities besides simply prolonging their lives. Surveys find that they want to avoid suffering, strengthen relationships with family and friends, be mentally aware, not be a burden to others, and feel that their lives are complete.
He goes on to explain that our system of technological medical care has utterly failed to meet these needs, and the costs of this failure is measured in far more than dollars. He asks a great question: How can we afford this system’s expense and how can we build a health care system that actually helps people achieve what’s most important to them at the end of their lives?
Gawande includes lots of results from medical research studies in Being Mortal. One study primarily interviewed doctors, and the most shocking study I read was from sociologist Nicholas Christakis.
He asked 500 terminally ill patients’ doctors to estimate how long they thought their patient would survive and then followed the patients. Sixty-three percent of doctors overestimated their patient’s survival time and 17 percent underestimated it. The average estimate was 530 percent too high.
There are also study results in the book about cancer patients: Doctors usually tell patients when a cancer is not curable. However, most are reluctant to give a specific prognosis — even when pressed. Even more shocking, over 40 percent of oncologists admit to offering treatments that they believe are unlikely to work.
This is a great book if you’re thinking about how you might want to be cared for at the end of your life. It’s also a great book if you need to have end-of-life conversations with the people you love, including elderly and aging parents and grandparents. It’s a great idea to create those conversations with your loved ones and their health care providers.
This is an important read for:
- People who care for elderly folks
- Families of terminal patients
- Professional caregivers
- People who are in their 50s, 60s, and 70s who want to make end-of-life care decisions
- Anyone who wants to write advanced directives for themselves and their families
Being Mortal ends with the death of Gawande’s father. His tender and heartfelt words about being present at this death exude compassion. I walked away feeling that I, too, was a witness to the end of his life. I felt sadness and suffering — and deep love. Read Being Mortal. You’ll be thankful you did.