The Interview: Surgeon-author Atul Gawande Macleans.ca
macleans.ca /society/health/the-interview-surgeon-author-atul-gawande/
Brian Bethune
“I learned about a lot of things in medical school,” writes Atul Gawande in his new book Being Mortal, “but
mortality wasn’t one of them.” Gawande, 48, is a MacArthur Fellowship “genius” award winner, a professor
at Harvard Medical School, the director of the health-systems innovation centre Ariadne Labs, a New
Yorker staff writer and author of three previous bestsellers. Through professional and personal experience,
Gawande, the Brooklyn-born child of Indian immigrants to the U.S., has concluded that contemporary
medicine’s all-out assault on death prevents the dying from having as good a life as possible all the way to
the very end.
Q: There is a lot of the personal in this book, including the life and death of your 110-year-old grandfather
in India. You write of it to show why the traditional multigenerational family shouldn’t be mythologized.
A: Right, young people want to run from that. And guess what? The elderly don’t want to move back in with
us either. Everyone wants independence. When my grandfather died in the bosom of the extended family it
worked amazing for him, but only because it enslaved the young, especially the young women who would
do the work. And the young men who would expect their careers to follow what the elders determined. I
talked about my uncles reaching 80 years of age still waiting to inherit their land—they were not fully adults
yet. The economic future of our countries arises from young people’s freedom to work where they want,
marry whom they want, live where they want. But when Western societies shifted in that direction, there
was no plan for the elderly, for what happens as we face serious illness and loss of independence. So then
we backed into the idea, “I know what! Medicine will take care of that.”
Q: What you saw in India brings to mind North America a century ago.
A: Westerners medicalized mortality over the last 50 years because of the poor and sick elderly, hence the
term “nursing” home. Now we’ve medicalized the end for almost everyone, to the extent that only 15 per
cent of North Americans now die at home. That process is under way today for India, China, Korea and
lots of others. In India, in a culture where families have always cared for the elderly, old-age homes are
appearing, some very Dickensian—basically poorhouses for the elderly, sometimes just dumped there by
families. It allows you to see the past in the present. We’ll see more of this, and the family tensions
involved, as these socio-economic transitions occur in countries that still don’t have the funds for pensions
and old-age homes.
Q: By medicalizing mortality, you mean a refusal or inability to distinguish between a tragedy to be
managed and a problem to be solved . The treatment resulting from the latter, you write, can be “barbaric.”
A: Straightforwardly barbaric. Which reflects just how much of a failure our decision-making is when
treatments stop working well. Medicine is so very good at fixing problems, doctors always find room to say,
“Well, let’s try another treatment,” without thinking about what that might take away, the harm it could do.
You know, the fourth regimen of chemotherapy, you’re just getting the toxicity and none of the benefit, in
most instances. Often it’s done out of an inability to have the kind of discussion and understanding of death
that would recognize that the best possible day today, with what capabilities we have, is going to be far
better than sacrificing yet another week for the sake of some possible future week. Doctors have to learn to
ask, “What are your priorities? What are the things you’re willing to trade off and not willing to trade off?
What outcomes are acceptable?”
Q: You believe too many people still think hospice means,“You’re giving up on me”?
A: Yes, they do, but hospice is about seeing if we can use our technology and capabilities to help you now.
Hospice staff prescribe medications, bring devices, organize experts to come and help, in the name of,
“What would be a good day for you today?” There is the story I tell of Peg Batchelder—my daughter’s
piano teacher —who was two weeks in a hospital dying from cancer, miserable, in pain, when the doctors
told her, “We don’t think we have any other options.” She’s left wondering, “Is there an experimental
therapy? Are they abandoning me?” and she’s angry. But then came the hospice discussion: “What would
a good day be for you?” and at first it was just to have no pain, and within a couple days the hospice team
achieved that, so she raised her sights—“I don’t have that much time left. What if I could teach?” And they
made it so that she could [teach], by managing her medication so that she wasn’t in pain or in a daze.
Plus, the research shows people in hospice often live longer than those in hospital, because their
“treatment” isn’t debilitating.
Q: Doctors are starting to be more comfortable in having that conversation, but you think they’re not yet
there?
A: The god-like approach—doctor knows best—is mostly gone. Still common, though, is the retail doctor
who says, “You got the red pill, you got the blue pill. I’ll tell you the pros and the cons and then you tell me
what you want and I’ll execute.” What patients commonly say to me is, “What would you do?” and the
medical school answer is, “You shouldn’t tell them. It’s their choice.” But the real answer has to be, “Okay, I
will tell you, but I need to know a lot more about you. Tell me what your fears are, your goals, what
outcomes are acceptable and not acceptable.” It’s a counsellor role, and that we don’t teach in the medical
schools, though we’re starting to. People are recognizing how the medicalization of mortality has failed us.
They want to have the conversations and the chance to have a say about what happens in their life, but
neither families nor the medical world fully know how to get there yet.
Q: That conversation has to include the families too, of both the mortally ill and the elderly, because loved
ones and patients can have very different perspectives.
A: Someone I spoke to expressed it best when she said, “Safety is what we want for those we love, and
autonomy is what we want for ourselves.” Having a life worth living means having something more than
just your health and safety looked after. Many old people go into places where the staff care a lot about
safety but not about privacy, or where you can’t have a beer because it’s not safe, or where someone with
Alzheimer’s disease has to eat only puréed food and when they steal a cookie they get in trouble. Like,
give ’em the damn cookie! That turns out to be why the folks in old-age homes can be so miserable. It took
me forever to figure out why my poor wife’s grandmother, Alice, was so unhappy in her independent-living
place, though it seemed fine to the family, because she didn’t have the freedom to take the chances she
wanted to take.
Q: Until she seized that autonomy at the end and didn’t make the call to the nurses.
A: That’s right. As far as I can tell she let herself bleed to death one night.
Q: You quote Karen Brown Wilson, who founded the field of assisted living, saying families looking at oldage homes focus as much on, “Will I be happy leaving Mom here?” as on, “Will Mom be happy here?”
A: The whole nursing-home industry sells to kids and the kids are concerned with safety and with their own
peace of mind. They go through a place asking, “How many falls do people have here?” and, “What’s the
safety rating?” They don’t ask, “What’s the loneliness rating?” What’s the, “I-feel-totally-purposeless
rating?”
Q: What is your thinking on assisted dying?
A: There’s a great concern to control the possibility we will face unbearable suffering, but I worry that our
energy has gone toward trying to ensure a good death rather than what people fear even more: not being
allowed to have as good a life as possible to the very end. We’ve expended a lot of effort on assisted
death, and way too little on assisted living. Too much emphasis on it may mean less resources put into
hospice. The lessons coming out of the three U.S. states where physicians can prescribe medication for
people to achieve their own deaths, are that it’s a tiny fraction of the population that takes up that option,
and only about half of those use it. I think there’s a place for making sure people have that assurance, but
more important for me is a case like Peg Batchelder who was faced with unbearable pain, but got help and
realized she still had potential, even with six weeks to go, and she achieved it.
Q: No matter what—hospice, assisted death, heroic medical efforts—there comes an end. You point out
endings are not controllable.
A: There are lots of humiliating, grim, bodily-fluidic aspects to living all the way to the end, and a beautiful
death with dignity may not happen. When I was putting this together, I was a surgeon who took on
problems I could not always fix, a son with parents in their late 70s facing mounting difficulties, and a writer
coming to realize I’m not the only one who seems to be struggling with these situations. But, yes, an ending
always comes, and we need to honour people’s wishes during it as much as we can.
DISCUSSION QUESTIONS
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?
‘Being Mortal,’ by Atul Gawande
nytimes.com /2014/10/17/arts/being-mortal-by-atul-gawande.html
By JANET MASLIN
Atul Gawande’s “Being Mortal: Medicine and What Matters in the End” introduces its author as a
myopically confident medical school student whose seminar in doctor-patient interaction spent an hour on
Tolstoy’s novella “The Death of Ivan Ilyich.” As a young man, he was not ready to understand the title
character’s loneliness, suffering and desire to be pitied. He saw medical compassion as a given and Ivan
Ilyich’s condition as something modern medicine could probably cure. He and his fellow students cared
about acquiring knowledge and competence. They did not see mortality as part of the medical equation.
Now a surgeon (and rightfully popular author) in his 40s, Dr. Gawande sees why that story was part of his
training. “I never expected that among the most meaningful experiences I’d have as a doctor — and,
really, as a human being — would come from helping others deal with what medicine cannot do as well as
what it can,” he writes.
“Being Mortal” uses a clear, illuminating style to describe the medical facts and cases that have brought
him to that understanding. He begins with an anecdote that illustrates how wrong doctors can be if they let
their hubris and fear of straight talk meld with a patient’s blind determination to fight on, no matter what.
“Don’t you give up on me,” demands a man with cancer, though the surgery he wants cannot possibly cure
him. “He was pursuing little more than a fantasy at the risk of a prolonged and terrible death — which was
precisely what he got,” Dr. Gawande writes.
Such things happen because modern death-delaying techniques are relatively new in medicine. Which
patients have long-term life-threatening conditions and which are really at death’s door? In what Dr.
Gawande calls “an era in which the relationship between patient and doctor is increasingly miscast in retail
terms,” how easy is it for doctors — trained to solve problems and succeed — to acknowledge that there’s
no cure to be had? How many doctors, used to telling their patients how to live, are ready to talk to them
about how to die?
Dr. Gawande’s early description of how the body decays with age is nothing if not sobering. It’s one thing
to know that arteries harden; it’s another to learn that he, as a surgeon, has encountered aortas so
calcified that they crunch. And so it goes with this book’s thorough litany of body parts, from the news that
an elderly person’s shrinking brain can actually be knocked around inside his or her skull to the way a
tooth can determine a person’s age, give or take five years. Eat and exercise however you want, tell
everyone how old your grandparents lived to be: According to “Being Mortal,” none of these factors do
much to slow the march of time.
So a lot of the book is devoted to subjects generally unmentionable, like geriatrics. “When the prevailing
fantasy is that we can be ageless, the geriatrician’s uncomfortable demand is that we accept we are not,”
he writes. And the number of doctors willing to become geriatricians is shrinking, partly because the field is
not as lucrative as, say, plastic surgery, and partly because it provides so little instant satisfaction, and
requires such work as a detailed, lengthy examination of callused old feet.
“Mainstream doctors are turned off by geriatrics, and that’s because they do not have the faculties to cope
with the Old Crock,” says Dr. Felix Silverstone, a specialist in the field. To summarize: This hypothetical
Old Crock is deaf and forgetful, can’t see, has trouble understanding what the doctor says and has no one
chief complaint; he has 15 of them. He has high blood pressure, diabetes and arthritis. “There’s nothing
glamorous about taking care of any of those things.”
But patients who receive good geriatric care stay happier and healthier, just as old people who can remain
at home and aren’t forced into nursing homes are better able to enjoy their lives. This book makes a
thorough inquiry into how the idea of the assisted-living facility arose as a supposed improvement on
regimented nursing homes but has often become a disheartening place for independent-minded people to
have to go. The all-important quality-of-life issue that is used to market such places, Dr. Gawande
maintains, is directed more toward the people planning to leave Mom then than toward Mom herself. But
he sees a lot of hope in the group living concept, if it is overseen with the residents’ happiness in mind.
The toughest stories in the book are, of course, the terminal ones. And Dr. Gawande gives an agonizing
account of how his own father, also a surgeon, gradually lost control of his body, even while understanding
exactly what was happening to him. He writes of his family’s ordeal in facing the reality of this downhill
slide, and of his own particular helplessness as a doctor. He captures the inevitable physical intimacy that
comes with death, which is perhaps the strangest shock to a culture that has used hospitals and nursing
facilities to isolate the dying from the healthy in ways that earlier generations never could.
Last and hardly least, Dr. Gawande describes some of his toughest cases, including that of a pregnant 34year-old with terminal cancer (a tough fighter facing a heartbreaking situation) and a woman whose
abdominal troubles prove far more awful than anything the doctor anticipated. By then, he has made a
subtle but all-important change in how he answers patients’ terrified questions. Asked “Am I going to die?”
his answer could be: “No, no, no. Of course not.” But he learns to say, “I am worried.” That’s a way of being
honest, serious and empathetic, showing he is wholly on the patient’s side. It won’t work miracles. But it’s
the best a doctor can do.