Being Mortal

The problem medicine does not teach

Atul Gawande is a surgeon at a Boston hospital and a writer. He opens with what medical school did not cover: aging, frailty and death. He read Tolstoy's novella The Death of Ivan Ilyich as a student and saw it as a lesson in the failure of character. Years later he saw it as a lesson about medicine. Ivan Ilyich's doctors argue about diagnoses while the patient wants comfort and honesty.

Gawande contrasts two grandparents. His wife's grandmother, Alice Hobson, lived alone in Arlington, Virginia, into her eighties, driving, gardening and running her own life. His own grandfather, Sitaram Gawande, lived to nearly 110 in a village in India, surrounded by family who adjusted their lives around him. Sitaram's arrangement was possible because of an extended family that no longer exists in most of the world. Alice's independence was the modern ideal, and the book is about what happens when it ends.

The argument is that medicine has one tool for the end of life, which is more treatment, and that this tool fails people when their real needs are about how to live with decline.

Things fall apart: the body in old age

Gawande walks through the biology of aging. Teeth wear down, bones lose density, arteries harden, the heart muscle thickens, and the brain shrinks. The process is not a single disease. It is a slow loss of reserve, so that a fall or an infection that a younger body absorbs can tip an older one into dependence.

He spends a morning with Juergen Bludau, chief of geriatrics at his hospital, who sees an 85-year-old patient named Jean Gavrilles. Bludau spends most of the visit on her feet, her balance, her diet and her medications, because falls and malnutrition are what will take away her independence, not any one of her diagnoses. Gawande cites a study in which patients seen by a geriatrics team were less likely to become disabled or depressed than those in standard care. Yet geriatrics is shrinking as a specialty because it pays poorly and the work is unglamorous.

He also profiles Felix Silverstone, a retired geriatrician in his late eighties who is caring for his wife Bella and managing his own decline. Silverstone knows exactly what is coming and still finds it hard to accept help.

Dependence: how nursing homes happened

Gawande follows Alice Hobson's decline. After a series of falls she moves into a retirement community, then into its nursing home wing. She hates it. The staff manage her schedule, her meals and her safety. She has no control and nothing she values.

He explains how this came to be. Before the twentieth century, the old who had no family went to poorhouses. In the 1930s Social Security let more of the elderly live on their own. After 1946 the Hill-Burton Act funded a wave of hospital construction, and hospitals filled with old people who had nowhere to go. In 1954 Congress funded separate facilities for them, and after Medicare and Medicaid arrived in 1965 the nursing home industry grew fast. The nursing home was built to clear hospital beds, not to give old people a good life.

The result is an institution designed around safety and routine. Gawande draws on sociologist Erving Goffman's idea of the total institution, where all parts of life happen in one place under one authority. He notes that children usually choose the nursing home for a parent, and they choose safety. The parent would often choose freedom.

Assisted living and the Eden Alternative

Two reformers show that a different design is possible.

Keren Brown Wilson was a gerontology student in Oregon whose mother, Jessie, had a stroke and ended up in a nursing home. Jessie asked her why she did not do something for people like her. In 1983 Wilson opened Park Place in Portland, the first assisted living facility. Residents had their own apartments with locks on the doors, kitchens and pets. They could decide when to wake up, what to eat and what risks to take. The state predicted disaster. Instead, residents' health and satisfaction held up at lower cost than a nursing home. The model spread across the country, and as it spread, operators watered it down until many assisted living facilities became nursing homes with better furniture.

Bill Thomas was a young doctor who took a job as medical director of Chase Memorial Nursing Home in New Berlin, New York, in 1991. He decided the residents were suffering from boredom, loneliness and helplessness. His cure was life: he brought in two dogs, four cats, a hundred parakeets, hundreds of plants, a garden, and children from an after-school program. He called it the Eden Alternative. A study comparing Chase with a nearby nursing home over two years found that prescriptions per resident fell by about half, drug costs fell, and deaths fell by 15 percent. Thomas later developed the Green House model, small homes for about ten residents each.

Gawande tells these stories through Lou Sanders, a man in his nineties who moves in with his daughter Shelley, then into an assisted living facility that gives him no say over anything, and finally into the Leonard Florence Center for Living in Chelsea, Massachusetts, a Green House home built on the small-household model, where he can keep the routines that matter to him. The lesson Gawande draws from psychologist Laura Carstensen's research is that as people sense their time is short, they care less about achievement and more about the people and daily pleasures close to them.

Letting go: hospice and palliative care

The book then turns to terminal illness. Sara Monopoli was 34 and pregnant when she was diagnosed with incurable lung cancer. Her doctors, including Gawande, offered one treatment after another. Each had a small chance of helping and a large chance of harming. Nobody wanted to say that she was dying. She spent her last months in treatment rather than at home and died in the hospital.

Gawande contrasts this with hospice. He follows a hospice nurse, Sarah Creed, on home visits and sees that hospice does not mean doing nothing. It means focusing on the patient's goals for today. He cites a study led by Jennifer Temel at Massachusetts General Hospital in which patients with advanced lung cancer who saw a palliative care specialist early stopped chemotherapy sooner, entered hospice earlier, suffered less, and lived about 25 percent longer than those who received standard care. He also describes an experiment by the insurer Aetna, which let patients keep treatment while entering hospice. Hospice use rose sharply and emergency visits and intensive care use fell.

The town of La Crosse, Wisconsin, is his other example. A program led by Bud Hammes got most residents to complete advance directives by discussing four questions before they got sick. The town's end-of-life costs are about half the national average, and Gawande argues the lower cost is a side effect of people getting the care they actually want.

Susan Block, a palliative care specialist at his hospital, teaches him how to do this. When her own father, Jack Block, faced spinal surgery that might leave him paralyzed, she asked him what he would be willing to endure to stay alive. He said that if he could eat chocolate ice cream and watch football on television, he would accept a great deal. When a complication arose during surgery, that answer told the surgeons what to do.

The hard conversations

Gawande describes three kinds of doctor, drawing on a framework from the ethicists Ezekiel and Linda Emanuel. Dr. Paternalistic decides for the patient. Dr. Informative lists the options and leaves the choice to the patient. Dr. Interpretive asks what matters most to the patient and helps them get it. Medicine has moved from the first to the second, and Gawande argues it needs to reach the third.

The conversation Block teaches has a short set of questions:

• What is your understanding of your situation?
• What are your fears about what is to come?
• What are your hopes and goals?
• What trade-offs are you willing to make, and which are you not?

He practices on Jewel Douglass, a patient of his with ovarian cancer and a bowel obstruction. Instead of listing procedures, he asks what she is hoping for and what she is afraid of. She wants to be at a family wedding and to be at home. That shapes a smaller operation than he would otherwise have offered, and she gets the wedding.

His father's illness

Gawande's father, Atmaram, was a urologist in Athens, Ohio. In his seventies he developed a slow-growing tumor inside his spinal cord. One neurosurgeon urged immediate surgery. Another, Edward Benzel at the Cleveland Clinic, asked what the tumor was stopping him from doing and suggested waiting until the symptoms became hard to live with. His father chose Benzel. He kept operating, then kept doing the work he valued, for several more years.

When the surgery finally came, it helped for a while. Then radiation and chemotherapy, which weakened him more than the tumor had. Gawande, his mother and his sister used Block's questions. His father's fears were of paralysis and of being a burden. His hopes were to see people, to keep his mind, and to be at home. He chose hospice at home over further treatment. The hospice nurse made small adjustments that gave him weeks of better days.

Gawande cites Daniel Kahneman's peak-end rule, from a study in which patients' memory of a colonoscopy depended on its worst moment and its final moments, not its length. He argues that the same is true of a life. How it ends shapes how it is remembered, which is a reason to make the end good rather than long. His father died in 2011. The family took his ashes to Varanasi and scattered them in the Ganges, as he had asked.

Who should read it

Read it if you have an aging parent, a serious diagnosis in the family, or a job in medicine or care. It gives a short script for the conversation most families avoid and the history behind why the system makes that conversation so hard.