Being Mortal: Medicine and What Matters in the End (2 page)

This reality has been largely hidden, as the final phases of life become less familiar to people. As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did. Those who somehow did die at home likely died too suddenly to make it to the hospital—say, from a massive heart attack, stroke, or violent injury—or were too isolated to get somewhere that could provide help. Across not just the United States but also the entire industrialized world, the experience of advanced aging and death has shifted to hospitals and nursing homes.

When I became a doctor, I crossed over to the other side of the hospital doors and, although I had grown up with two doctors for parents, everything I saw was new to me. I had certainly never seen anyone die before and when I did it came as a shock. That wasn’t because it made me think of my own mortality. Somehow the concept didn’t occur to me, even when I saw people my own age die. I had a white coat on; they had a hospital gown. I couldn’t quite picture it the other way round. I could, however, picture my family in their places. I’d seen multiple family members—my wife, my parents, and my children—go through serious, life-threatening illnesses. Even under dire circumstances, medicine had always pulled them through. The shock to me therefore was seeing medicine
not
pull people through. I knew theoretically that my patients could die, of course, but every actual instance seemed like a violation, as if the rules I thought we were playing by were broken. I don’t know what game I thought this was, but in it we always won.

Dying and death confront every new doctor and nurse. The first times, some cry. Some shut down. Some hardly notice. When I saw my first deaths, I was too guarded to cry. But I dreamt about them. I had recurring nightmares in which I’d find my patients’ corpses in my house—in my own bed.

“How did he get here?” I’d wonder in panic.

I knew I would be in huge trouble, maybe criminal trouble, if I didn’t get the body back to the hospital without getting caught. I’d try to lift it into the back of my car, but it would be too heavy. Or I’d get it in, only to find blood seeping out like black oil until it overflowed the trunk. Or I’d actually get the corpse to the hospital and onto a gurney, and I’d push it down hall after hall, trying and failing to find the room where the person used to be. “Hey!” someone would shout and start chasing me. I’d wake up next to my wife in the dark, clammy and tachycardic. I felt that I’d killed these people. I’d failed.

Death, of course, is not a failure. Death is normal. Death may be the enemy, but it is also the natural order of things. I knew these truths abstractly, but I didn’t know them concretely—that they could be truths not just for everyone but also for this person right in front of me, for this person I was responsible for.

The late surgeon Sherwin Nuland, in his classic book
How We Die,
lamented, “The necessity of nature’s final victory was expected and accepted in generations before our own. Doctors were far more willing to recognize the signs of defeat and far less arrogant about denying them.” But as I ride down the runway of the twenty-first century, trained in the deployment of our awesome arsenal of technology, I wonder exactly what being less arrogant really means.

You become a doctor for what you imagine to be the satisfaction of the work, and that turns out to be the satisfaction of competence. It is a deep satisfaction very much like the one that a carpenter experiences in restoring a fragile antique chest or that a science teacher experiences in bringing a fifth grader to that sudden, mind-shifting recognition of what atoms are. It comes partly from being helpful to others. But it also comes from being technically skilled and able to solve difficult, intricate problems. Your competence gives you a secure sense of identity. For a clinician, therefore, nothing is more threatening to who you think you are than a patient with a problem you cannot solve.

There’s no escaping the tragedy of life, which is that we are all aging from the day we are born. One may even come to understand and accept this fact. My dead and dying patients don’t haunt my dreams anymore. But that’s not the same as saying one knows how to cope with what cannot be mended. I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering.

This experiment of making mortality a medical experience is just decades old. It is young. And the evidence is it is failing.

*   *   *

THIS IS A
book about the modern experience of mortality—about what it’s like to be creatures who age and die, how medicine has changed the experience and how it hasn’t, where our ideas about how to deal with our finitude have got the reality wrong. As I pass a decade in surgical practice and become middle-aged myself, I find that neither I nor my patients find our current state tolerable. But I have also found it unclear what the answers should be, or even whether any adequate ones are possible. I have the writer’s and scientist’s faith, however, that by pulling back the veil and peering in close, a person can make sense of what is most confusing or strange or disturbing.

You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine fails the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions—nursing homes and intensive care units—where regimented, anonymous routines cut us off from all the things that matter to us in life. 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. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.

I wrote this book in the hope of understanding what has happened. Mortality can be a treacherous subject. Some will be alarmed by the prospect of a doctor’s writing about the inevitability of decline and death. For many, such talk, however carefully framed, raises the specter of a society readying itself to sacrifice its sick and aged. But what if the sick and aged are
already
being sacrificed—victims of our refusal to accept the inexorability of our life cycle? And what if there are better approaches, right in front of our eyes, waiting to be recognized?

1
• The Independent Self

Growing up, I never witnessed serious illness or the difficulties of old age. My parents, both doctors, were fit and healthy. They were immigrants from India, raising me and my sister in the small college town of Athens, Ohio, so my grandparents were far away. The one elderly person I regularly encountered was a woman down the street who gave me piano lessons when I was in middle school. Later she got sick and had to move away, but it didn’t occur to me to wonder where she went and what happened to her. The experience of a modern old age was entirely outside my perception.

In college, however, I began dating a girl in my dorm named Kathleen, and in 1985, on a Christmas visit to her home in Alexandria, Virginia, I met her grandmother Alice Hobson, who was seventy-seven at the time. She struck me as spirited and independent minded. She never tried to disguise her age. Her undyed white hair was brushed straight and parted on one side, Bette Davis–style. Her hands were speckled with age spots, and her skin was crinkled. She wore simple, neatly pressed blouses and dresses, a bit of lipstick, and heels long past when others would have considered it advisable.

As I came to learn over the years—for I would eventually marry Kathleen—Alice grew up in a rural Pennsylvania town known for its flower and mushroom farms. Her father was a flower farmer, growing carnations, marigolds, and dahlias, in acres of greenhouses. Alice and her siblings were the first members of their family to attend college. At the University of Delaware, Alice met Richmond Hobson, a civil engineering student. Thanks to the Great Depression, it wasn’t until six years after their graduation that they could afford to get married. In the early years, Alice and Rich moved often for his work. They had two children, Jim, my future father-in-law, and then Chuck. Rich was hired by the Army Corps of Engineers and became an expert in large dam and bridge construction. A decade later, he was promoted to a job working with the corps’s chief engineer at headquarters outside Washington, DC, where he remained for the rest of his career. He and Alice settled in Arlington. They bought a car, took road trips far and wide, and put away some money, too. They were able to upgrade to a bigger house and send their brainy kids off to college without need of loans.

Then, on a business trip to Seattle, Rich had a sudden heart attack. He’d had a history of angina and took nitroglycerin tablets to relieve the occasional bouts of chest pain, but this was 1965, and back then doctors didn’t have much they could do about heart disease. He died in the hospital before Alice could get there. He was just sixty years old. Alice was fifty-six.

With her pension from the Army Corps of Engineers, she was able to keep her Arlington home. When I met her, she’d been living on her own in that house on Greencastle Street for twenty years. My in-laws, Jim and Nan, were nearby, but Alice lived completely independently. She mowed her own lawn and knew how to fix the plumbing. She went to the gym with her friend Polly. She liked to sew and knit and made clothes, scarves, and elaborate red-and-green Christmas stockings for everyone in the family, complete with a button-nosed Santa and their names across the top. She organized a group that took an annual subscription to attend performances at the Kennedy Center for the Performing Arts. She drove a big V8 Chevrolet Impala, sitting on a cushion to see over the dashboard. She ran errands, visited family, gave friends rides, and delivered meals-on-wheels for those with more frailties than herself.

As time went on, it became hard not to wonder how much longer she’d be able to manage. She was a petite woman, five feet tall at most, and although she bristled when anyone suggested it, she lost some height and strength with each passing year. When I married her granddaughter, Alice beamed and held me close and told me how happy the wedding made her, but she’d become too arthritic to share a dance with me. And still she remained in her home, managing on her own.

When my father met her, he was surprised to learn she lived by herself. He was a urologist, which meant he saw many elderly patients, and it always bothered him to find them living alone. The way he saw it, if they didn’t already have serious needs, they were bound to develop them, and coming from India he felt it was the family’s responsibility to take the aged in, give them company, and look after them. Since arriving in New York City in 1963 for his residency training, my father had embraced virtually every aspect of American culture. He gave up vegetarianism and discovered dating. He got a girlfriend, a pediatrics resident from a part of India where they didn’t speak his language. When he married her, instead of letting my grandfather arrange his marriage, the family was scandalized. He became a tennis enthusiast, president of the local Rotary Club, and teller of bawdy jokes. One of his proudest days was July 4, 1976, the country’s bicentennial, when he was made an American citizen in front of hundreds of cheering people in the grandstand at the Athens County Fair between the hog auction and the demolition derby. But one thing he could never get used to was how we treat our old and frail—leaving them to a life alone or isolating them in a series of anonymous facilities, their last conscious moments spent with nurses and doctors who barely knew their names. Nothing could have been more different from the world he had grown up in.

*   *   *

MY FATHER’S FATHER
had the kind of traditional old age that, from a Western perspective, seems idyllic. Sitaram Gawande was a farmer in a village called Uti, some three hundred miles inland from Mumbai, where our ancestors had cultivated land for centuries. I remember visiting him with my parents and sister around the same time I met Alice, when he was more than a hundred years old. He was, by far, the oldest person I’d ever known. He walked with a cane, stooped like a bent stalk of wheat. He was so hard of hearing that people had to shout in his ear through a rubber tube. He was weak and sometimes needed help getting up from sitting. But he was a dignified man, with a tightly wrapped white turban, a pressed, brown argyle cardigan, and a pair of old-fashioned, thick-lensed, Malcolm X–style spectacles. He was surrounded and supported by family at all times, and he was revered—not in spite of his age but because of it. He was consulted on all important matters—marriages, land disputes, business decisions—and occupied a place of high honor in the family. When we ate, we served him first. When young people came into his home, they bowed and touched his feet in supplication.

In America, he would almost certainly have been placed in a nursing home. Health professionals have a formal classification system for the level of function a person has. If you cannot, without assistance, use the toilet, eat, dress, bathe, groom, get out of bed, get out of a chair, and walk—the eight “Activities of Daily Living”—then you lack the capacity for basic physical independence. If you cannot shop for yourself, prepare your own food, maintain your housekeeping, do your laundry, manage your medications, make phone calls, travel on your own, and handle your finances—the eight “Independent Activities of Daily Living”—then you lack the capacity to live safely on your own.

My grandfather could perform only some of the basic measures of independence, and few of the more complex ones. But in India, this was not of any dire consequence. His situation prompted no family crisis meeting, no anguished debates over what to do with him. It was clear that the family would ensure my grandfather could continue to live as he desired. One of my uncles and his family lived with him, and with a small herd of children, grandchildren, nieces, and nephews nearby, he never lacked for help.