Being Mortal

What the book bears witness to

Atul Gawande is a surgeon at Brigham and Women’s Hospital in Boston and a writer whose essays on medicine appeared for many years in The New Yorker. In Being Mortal, published in 2014, he turns to a subject he says medical school barely taught him: what happens when medicine can no longer cure.

The book bears witness to the experience of ageing and dying in modern societies, especially in the United States. It draws on Gawande’s own patients, on interviews with people in nursing homes, assisted living and hospice care, and on the decline and death of his father, a urologist who developed a tumour in his spinal cord. Gawande describes these experiences with a surgeon’s precision and a son’s grief.

The book became a bestseller and was adapted into a PBS Frontline documentary in 2015. Gawande delivered the BBC Reith Lectures in 2014 on the future of medicine. The book influenced the growth of palliative care and of programmes that train doctors to discuss goals of care with seriously ill patients, including the Serious Illness Care Program developed at Ariadne Labs, which Gawande founded. He later served as an assistant administrator for global health at the US Agency for International Development.

What it shows

It shows how the care of the old changed. For most of history, Gawande notes, elderly people lived with their families, and old age was rare enough to carry authority. As people lived longer and families moved apart, the old were increasingly placed in institutions. Nursing homes grew out of hospitals and were run on hospital principles: safety, hygiene and efficiency. They kept residents safe and took away almost every choice: when to wake, what to eat, whom to see.

It shows the people who tried to change that. Keren Brown Wilson, whose mother had been placed in a nursing home after a stroke, created one of the first assisted-living facilities in Oregon in the 1980s, designed to give residents private apartments, locks on their doors and control over their days. Bill Thomas, a physician, brought animals, plants and children into a nursing home in New York, and found that residents needed fewer medications and lived with more spirit. Gawande describes how many later assisted-living facilities kept the name but lost the idea.

It shows the failures of medicine at the end of life. Doctors often pursue treatment after it has stopped helping, because they and their patients find it hard to talk about dying. Gawande describes patients who spent their last weeks in intensive care undergoing treatments with little chance of success, and families who did not know what their relatives would have wanted.

And it shows a better way. Hospice and palliative care workers ask questions that doctors rarely ask: what do you understand about your situation, what are your fears, what are your goals if your condition worsens, what trade-offs are you willing to make. Gawande describes learning to ask these questions himself, and how the answers changed the care his patients received, and his father’s. He reports research that patients who had such conversations often chose less aggressive treatment, suffered less and, in some studies, lived as long or longer.

The questions it leaves

The book leaves the question of what a good life is at its end. Gawande draws on the philosopher Josiah Royce’s idea that people need a cause beyond themselves, and on the psychologist Laura Carstensen’s research showing that when people perceive their time as limited, their priorities shift toward close relationships and everyday pleasures. What people want, he concludes, is to remain the authors of their own lives for as long as they can.

It leaves the tension between safety and autonomy. Families and institutions want to protect old people, and protection often takes away the freedom that made life worth living. The book does not resolve this tension, but it shows how often it has been settled in favour of safety without anyone asking the person concerned.

And it leaves the question of what doctors are for. Gawande argues that medicine exists to enable well-being, of which health and survival are only parts, and that sometimes this means stopping treatment.

What it changes in how you see others

The book changes how one sees elderly relatives and patients. It suggests asking them, explicitly and often, what matters to them and what they fear, rather than deciding for them what is best.

It changes how one sees institutions designed for safety. Many organisations, not only nursing homes, protect people by taking away their choices, and measure success by what they prevent rather than what they allow.

And it changes how one sees hard conversations. Gawande shows that the question “what are your goals?” can be asked gently, and that avoiding it does not protect anyone. The site’s idea page Tragic Choices and What Remains explores decisions in which every option involves loss, as many end-of-life choices do.