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About the Author
Atul Gawande is author of three bestselling books: Complications, a finalist for the National Book Award; Better, and The Checklist Manifesto. His latest book is Being Mortal: Medicine and What Matters in the End. He is also a surgeon at Brigham and Women's Hospital in Boston, a staff writer for The New Yorker, and a professor at Harvard Medical School and the Harvard School of Public Health. He has won the Lewis Thomas Prize for Writing about Science, a MacArthur Fellowship, and two National Magazine Awards. In his work in public health, he is Executive Director of Ariadne Labs, a joint center for health systems innovation, and chairman of Lifebox, a nonprofit organization making surgery safer globally. He and his wife have three children and live in Newton, Massachusetts.
Date of Birth:November 5, 1965
Place of Birth:Brooklyn, New York
Education:B.A.S., Stanford University, 1987; M.A., Oxford University, 1989; M.D., Harvard Medical School, 1995
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Medicine and What Matters in the End
By Atul Gawande
Henry Holt and CompanyCopyright © 2014 Atul Gawande
All rights reserved.
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.
The arrangement allowed him to maintain a way of life that few elderly people in modern societies can count on. The family made it possible, for instance, for him to continue to own and manage his farm, which he had built up from nothing—indeed, from worse than nothing. His father had lost all but two mortgaged acres and two emaciated bulls to a moneylender when the harvest failed one year. He then died, leaving Sitaram, his eldest son, with the debts. Just eighteen years old and newly married, Sitaram was forced to enter into indentured labor on the family's two remaining acres. At one point, the only food he and his bride could afford was bread and salt. They were starving to death. But he prayed and stayed at the plow, and his prayers were answered. The harvest was spectacular. He was able to not only put food on the table but also pay off his debts. In subsequent years, he expanded his two acres to more than two hundred. He became one of the richest landowners in the village and a moneylender himself. He had three wives, all of whom he outlived, and thirteen children. He emphasized education, hard work, frugality, earning your own way, staying true to your word, and holding others strictly accountable for doing the same. Throughout his life, he awoke before sunrise and did not go to bed until he'd done a nighttime inspection of every acre of his fields by horse. Even when he was a hundred he would insist on doing this. My uncles were worried he'd fall—he was weak and unsteady—but they knew it was important to him. So they got him a smaller horse and made sure that someone always accompanied him. He made the rounds of his fields right up to the year he died.
Had he lived in the West, this would have seemed absurd. It isn't safe, his doctor would say. If he persisted, then fell, and went to an emergency room with a broken hip, the hospital would not let him return home. They'd insist that he go to a nursing home. But in my grandfather's premodern world, how he wanted to live was his choice, and the family's role was to make it possible.
My grandfather finally died at the age of almost a hundred and ten. It happened after he hit his head falling off a bus. He was going to the courthouse in a nearby town on business, which itself seems crazy, but it was a priority to him. The bus began to move while he was getting off and, although he was accompanied by family, he fell. Most probably, he developed a subdural hematoma—bleeding inside his skull. My uncle got him home, and over the next couple of days he faded away. He got to live the way he wished and with his family around him right to the end.
* * *
FOR MOST OF human history, for those few people who actually survived to old age, Sitaram Gawande's experience was the norm. Elders were cared for in multigenerational systems, often with three generations living under one roof. Even when the nuclear family replaced the extended family (as it did in northern Europe several centuries ago), the elderly were not left to cope with the infirmities of age on their own. Children typically left home as soon as they were old enough to start families of their own. But one child usually remained, often the youngest daughter, if the parents survived into senescence. This was the lot of the poet Emily Dickinson, in Amherst, Massachusetts, in the mid-nineteenth century. Her elder brother left home, married, and started a family, but she and her younger sister stayed with their parents until they died. As it happened, Emily's father lived to the age of seventy-one, by which time she was in her forties, and her mother lived even longer. She and her sister ended up spending their entire lives in the parental home.
As different as Emily Dickinson's parents' life in America seems from that of Sitaram Gawande's in India, both relied on systems that shared the advantage of easily resolving the question of care for the elderly. There was no need to save up for a spot in a nursing home or arrange for meals-on-wheels. It was understood that parents would just keep living in their home, assisted by one or more of the children they'd raised. In contemporary societies, by contrast, old age and infirmity have gone from being a shared, multigenerational responsibility to a more or less private state—something experienced largely alone or with the aid of doctors and institutions. How did this happen? How did we go from Sitaram Gawande's life to Alice Hobson's?
One answer is that old age itself has changed. In the past, surviving into old age was uncommon, and those who did survive served a special purpose as guardians of tradition, knowledge, and history. They tended to maintain their status and authority as heads of the household until death. In many societies, elders not only commanded respect and obedience but also led sacred rites and wielded political power. So much respect accrued to the elderly that people used to pretend to be older than they were, not younger, when giving their age. People have always lied about how old they are. Demographers call the phenomenon "age heaping" and have devised complex quantitative contortions to correct for all the lying in censuses. They have also noticed that, during the eighteenth century, in the United States and Europe, the direction of our lies changed. Whereas today people often understate their age to census takers, studies of past censuses have revealed that they used to overstate it. The dignity of old age was something to which everyone aspired.
But age no longer has the value of rarity. In America, in 1790, people aged sixty-five or older constituted less than 2 percent of the population; today, they are 14 percent. In Germany, Italy, and Japan, they exceed 20 percent. China is now the first country on earth with more than 100 million elderly people.
As for the exclusive hold that elders once had on knowledge and wisdom, that, too, has eroded, thanks to technologies of communication—starting with writing itself and extending to the Internet and beyond. New technology also creates new occupations and requires new expertise, which further undermines the value of long experience and seasoned judgment. At one time, we might have turned to an old-timer to explain the world. Now we consult Google, and if we have any trouble with the computer we ask a teenager.
Perhaps most important of all, increased longevity has brought about a shift in the relationship between the young and the old. Traditionally, surviving parents provided a source of much-needed stability, advice, and economic protection for young families seeking pathways to security. And because landowners also tended to hold on to their property until death, the child who sacrificed everything to care for the parents could expect to inherit the whole homestead, or at least a larger portion than a child who moved away. But once parents were living markedly longer lives, tension emerged. For young people, the traditional family system became less a source of security than a struggle for control—over property, finances, and even the most basic decisions about how they could live.
And indeed, in my grandfather Sitaram's traditional household, generational tension was never far away. You can imagine how my uncles felt as their father turned a hundred and they entered old age themselves, still waiting to inherit land and gain economic independence. I learned of bitter battles in village families between elders and adult children over land and money. In the final year of my grandfather's life, an angry dispute erupted between him and my uncle with whom he lived. The original cause was unclear: perhaps my uncle had made a business decision without my grandfather; maybe my grandfather wanted to go out and no one in the family would go with him; maybe he liked to sleep with the window open and they liked to sleep with the window closed. Whatever the reason, the argument culminated (depending on who told the story) in Sitaram's either storming out of the house in the dead of night or being locked out. He somehow made it miles away to another relative's house and refused to return for two months.
Global economic development has changed opportunities for the young dramatically. The prosperity of whole countries depends on their willingness to escape the shackles of family expectation and follow their own path—to seek out jobs wherever they might be, do whatever work they want, marry whom they desire. So it was with my father's path from Uti to Athens, Ohio. He left the village first for university in Nagpur and then for professional opportunity in the States. As he became successful, he sent ever larger amounts of money home, helping to build new houses for his father and siblings, bring clean water and telephones to the village, and install irrigation systems that ensured harvests when the rainy seasons were bad. He even built a rural college nearby that he named for his mother. But there was no denying that he had left, and he wasn't going back.
Disturbed though my father was by the way America treated its elderly, the more traditional old age that my grandfather was able to maintain was possible only because my father's siblings had not left home as he had. We think, nostalgically, that we want the kind of old age my grandfather had. But the reason we do not have it is that, in the end, we do not actually want it. The historical pattern is clear: as soon as people got the resources and opportunity to abandon that way of life, they were gone.
* * *
THE FASCINATING THING is that, over time, it doesn't seem that the elderly have been especially sorry to see the children go. Historians find that the elderly of the industrial era did not suffer economically and were not unhappy to be left on their own. Instead, with growing economies, a shift in the pattern of property ownership occurred. As children departed home for opportunities elsewhere, parents who lived long lives found they could rent or even sell their land instead of handing it down. Rising incomes, and then pension systems, enabled more and more people to accumulate savings and property, allowing them to maintain economic control of their lives in old age and freeing them from the need to work until death or total disability. The radical concept of "retirement" started to take shape.
Excerpted from Being Mortal by Atul Gawande. Copyright © 2014 Atul Gawande. Excerpted by permission of Henry Holt and Company.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
1 • The Independent Self 11
2 • Things Fall Apart 25
3 • Dependence 55
4 • Assistance 79
5 • A Better Life 111
6 • Letting Go 149
7 • Hard Conversations 191
8 • Courage 231
Notes on Sources 265
Reading Group Guide
Named a best book of the year by numerous outlets, including the Washington Post, The Wall Street Journal, NPR, the Chicago Tribune, The Economist, and Mother Jones, this provocative examination raises timely concerns about our purposes and priorities, in an age dominated by technology and medicine. Brimming with moving, real-world stories from all perspectives in the debatedoctors and patients, caregivers and administratorsincluding the difficult decisions Dr. Gawande’s own father faced, Being Mortal is a book that has inspired millions of vital discussions. Whether you read it with your book club or your family, we hope this guide will enhance your journey.
1. Why do we assume we will know how to empathize and comfort those in end-of-life stages? How prepared do you feel to do and say the right thing when that time comes for someone in your life?
2. What do you think the author means when he says that we’ve “medicalized mortality”? How does The Death of Ivan Ilyich illustrate the suffering that can result? Have you ever witnessed such suffering?
3. As a child, what did you observe about the aging process? How was mortality discussed in your family? How do your family’s lifespan stories compare to those in the book?
4. Have you ever seen anyone die? What was it like? How did the experience affect your wishes for the end of your own life?
5. What surprising facts did you discover about the physiology of aging? Did Dr. Gawande’s descriptions of the body’s natural transitions make you more or less determined to try to reverse the aging process?
6. Did you read Alice Hobson’s story as an inspiring one, or as a cautionary tale?
7. Do you know couples like Felix and Bella? The last days for Bella were so hard on Felix, but do you think he’d have had it any other way? Was there anything more others could have done for this couple?
8. Chapter 4 describes the birth of the assisted-living facility concept (Park Place), designed by Keren Wilson to provide her disabled mother, Jessie, with caregivers who would not restrict her freedom. Key components included having her own thermostat, her own schedule, her own furniture, and a lock on the door. What does it mean to you to treat someone with serious infirmities as a person and not a patient?
9. What realities are captured in the story of Lou Sanders and his daughter, Shelley, regarding home care? What conflicts did Shelley face between her intentions and the practical needs of the family and herself?
What does the book illustrate about the universal nature of this struggle in families around the globe?
10. Reading about Bill Thomas’s Eden Alternative in chapter 5, what came to mind when he outlined the Three Plagues of nursing home existence: boredom, loneliness, and helplessness? What do you think matters most when you envision eldercare?
11. How would you answer the question Gawande raises in chapter 6 regarding Sara Monopoli’s final days: “What do we want Sara and her doctors to do now?”
12. The author writes, “It is not death that the very old tell me they fear. It is what happens short of death…” (55)
What do you fear most about the end of life? How do you think your family would react if you told them, “I’m ready”? How do we strike a balance between fear and hope, while still confronting reality?
13. In Josiah Royce’s book, The Philosophy of Loyalty, he explores the reasons why just food, safety, shelter, etc. provide an empty existence. He concludes that we all need a cause beyond ourselves. Do you agree? What are your causes? Do you find them changing as you get older?
14. Often medical treatments do not work. Yet our society seems to favor attempts to “fix” health problems, no matter the odds of their success. Dr. Gawande quotes statistics that show 25% of Medicare spending goes to the 5% of patients in the last stages of life. Why do you think it’s so difficult for doctors and/or families to refuse or curtail treatment? How should priorities be set?
15. What is your attitude, as you put it into practice, toward old age? Is it something to deny or avoid, or a stage of life to be honored? Do you think most people are in denial about their own aging?
16. Discuss the often-politicized end-of-life questions raised in the closing chapters of Being Mortal. If you had to make a choice for a loved one between ICU and hospice, what would you most want to know from them? Susan Block’s father said he’d be willing to go through a lot as long as he was able to still “eat chocolate ice cream and watch football on television.” What would you be willing to endure and what would you not be willing to endure for the possibility of more time?
17. As the author learns the limitations of being Dr. Informative, how did your perception of doctors and what you want from them change? What would you want from your doctor if you faced a serious illness?
18. Doctors, and probably the rest of us, tend to define themselves by their successes, not their failures. Is this true in your life? At work, in your family, at whatever skills you have? Should we define ourselves more by our failures? Do you know people who define themselves by their failures? (Are they fun to be with?) How can doctors, and the rest of us, strike a balance?
19. In chapter 8, Dr. Gawande describes the choices made by his daughter’s piano teacher, Peg Bachelder. Her definition of a good day meant returning to teaching, culminating in two concerts performed by her students. If you were facing similar circumstances, what would your good day look like?
20. How was your reading affected by the book’s final scene, as Dr. Gawande fulfills his father’s wishes? How do tradition and spirituality influence your concept of what it means to be mortal?