ATUL GAWANDE
in conversation with PAUL HOLDENGRÄBER
April 28, 2011
LIVE from the New York Public Library
www.nypl.org/live
South Court Auditorium
PAUL HOLDENGRÄBER: Good evening. Good evening. My name is Paul
Holdengräber, and I’m the Director of LIVE from the New York Public Library, and it’s
a great, great pleasure to welcome you tonight. I’m sorry you had to go up and down and
sideways and digress to finally arrive here, but we have many things going on at the
Library tonight. I wish I had more power and I just could have made things happen in a
different room, but here you are, and I am very glad that you made it here tonight to hear
this conversation that I will be having with Atul Gawande.
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Before I get to the evening per se, let me just remind you that we have other programs
coming up. In fact, we have about five or six programs happening in the next three or
four days, it would seem. Tomorrow I will have the pleasure of interviewing our
president, the President of the New York Public Library, Paul LeClerc; he will be in
conversation with Bruno Racine, the president of the Bibliothèque nationale de France.
We will be talking about the future of libraries and reading in the digital age. Whenever I
heard the word of future of anything, I think of Paul Valery’s famous comment that the
future isn’t what it used to be, so we’ll see how that all goes.
With the PEN World Voices Festival we are hosting three events. I’ll be interviewing
Harold Bloom. We will also have the pleasure of having Jonathan Galassi speak about
Leopardi and Wole Soyinka will be giving the Arthur Miller Lecture for Freedom, so do
come to that. The title of his talk is Humpty Dumpty’s Still on the Wall. Later next week,
Elizabeth Gilbert will be here. Ralph Nader will be speaking with Peter Lewis and Ted
Turner about what billionaires can do and why they might be able to help us if they give
back their money and we will also be having Chris Blackwell later, in a couple of weeks.
Chris Blackwell, for those of you who are not familiar with his name, is the founder of
Island Records and he will be speaking about the fifty years of Island Records, so do
come for that.
Atul Gawande is the author of Better, Complications, and The Checklist Manifesto, a
MacArthur Fellow, a general endocrine surgeon at Brigham and Women’s Hospital in
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Boston, a staff writer for the New Yorker, and an Associate Professor at Harvard Medical
School and the Harvard School of Public Health. He also leads the World Health
Organization Safe Surgery Saves Lives program.
Before bringing Atul Gawande on the stage, I will ask Flash Rosenberg, our LIVE Artist
in Residence, to introduce a piece she drew on the occasion of a LIVE event we did about
obituaries. I am quite fascinated by obituaries. This event was called quite naturally
“LIVE from the New York Public Library presents Dead from the New York Public
Library.” Tonight in the audience we may have many doctors. That night we had quite a
few obituary writers and journalists. The New York Times undertakers were all there en
masse.
FLASH ROSENBERG: Thank you, Paul, for the opportunity to be Artist in Residence
for LIVE. While listening to conversations such as we’re about to hear tonight, I translate
the ideas discussed into drawing. I’ll be in the back at this lit-up workstation making a
portrait of what it feels like to be all of us, to be in the audience, and, you know, trying to
understand how concepts look as they land on us and mingle in the room. While
doodling, my sketches are videotaped and then edited to create the animated summary.
These drawings are not caricatures; they are not court portraits. I’m sitting way too, you
know, far too back, to be able to see clearly what the speakers look like, because what’s
more important to me is to show how the speakers think. The cameras are here to show
how they look. Tonight’s topic, as he just said, since it’s “Being Mortal and Other
Tragedies,” we’re going to see a finished conversation portrait from this past program
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that seems perhaps related. And if you’d like to see more on other subjects, you can go to
my website and see things from Dada to homework to silence to Jay-Z, go to
vimeo.com/flashrosenberg. Thank you.
(applause)
PAUL HOLDENGRÄBER: Flash Rosenberg, thank you very much. When asked to
submit a bio, a biography in seven words, Atul Gawande wrote: “Surgeon, writer, public
health researcher, professional dilettante.” Welcome Atul Gawande.
(applause)
(“Born to Run” plays)
ATUL GAWANDE: Springsteen?
PAUL HOLDENGRÄBER: Bruce Springsteen. Do you have any idea why we are
playing that?
ATUL GAWANDE: No.
PAUL HOLDENGRÄBER: Should I tell the audience?
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ATUL GAWANDE: Please do.
PAUL HOLDENGRÄBER: I think I read—I may be wrong—that under certain
circumstances you listen to this music.
ATUL GAWANDE: Yes. In the operating room, no less. This was on my playlist last
week.
PAUL HOLDENGRÄBER: So while you’re operating you’re listening to Bruce
Springsteen?
ATUL GAWANDE: Among others, yeah.
PAUL HOLDENGRÄBER: Does it help?
ATUL GAWANDE: Yes, but in the sense that in an operating room you have a group of
people. You are going to be there for twelve, fourteen hours, and what you need to get
through the day is a group of people and also get through your own part of the case. For
me music is an important tool for doing that. Number one, if I pick the music really well,
then the nurses and the anesthesiologists that I want are likely to pick me for my room
and I get known a little bit for my playlists, (laughter) and get certain people I want
coming in the door and if I pick the music well.
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PAUL HOLDENGRÄBER: I never thought of it this way.
ATUL GAWANDE: It’s very important, very important. And also, you know, you mix
in certain things in case there’s certain people you don’t want, you can switch over to,
you know, putting some rap on or something that you know they hate and they’ll take a
break and not come back. So it’s just another manipulation tool. (laughter) But also for
me it’s—you do five cases in a day, it’s a long day. It definitely keeps me going. It’s
great.
PAUL HOLDENGRÄBER: I have to say that you probably are the first person I’ve
invited to a LIVE program to whom I’ve written a fan letter. I wrote to you and invited
you because I read this piece, which for those of you who haven’t read it, I highly
encourage you to read it called “Letting Go.” It was in the New Yorker about nine months
ago, in August last year, and I remember writing to you, and I said that I believe that
piece should be—I’m sorry if I’m making you blush, but should be read—
ATUL GAWANDE: It’s harder for people to tell.
(laughter)
PAUL HOLDENGRÄBER: And you’re quite actually—a little digression, you’ve
written about blushing.
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ATUL GAWANDE: Yes, and an operation to remove the ability to blush.
PAUL HOLDENGRÄBER: It’s interesting the subjects you choose—blushing,
itching—
ATUL GAWANDE: The cost of American health care.
(laughter)
PAUL HOLDENGRÄBER: The cost of American health care. We will get to that as
well, I promise you. And I said in my note to you that you—the piece you wrote should
be translated in my view in every language known to man and should be read, and I don’t
know why I said this exactly, but I said to you it should be read three times in a lifetime.
And I don’t exactly know at what time that would be. Whether it should be when you are
fifteen, fifty-five, and if you are so lucky, seventy-five. But I felt that people should read
it many times in their lifetime. And you wrote back to me very kindly saying that you
hoped I knew some good translators but really didn’t have too much time, you were
dealing with more important things and coming to talk at the New York (audio dips out)
health care reform and all kinds of other issues, and then you wrote to me about two
months ago, which is the reason that this event came up quite spontaneously, saying,
“I’m in New York on the twenty-eighth of April. If you’d like we can talk about death
and dying that night.” And here we are.
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ATUL GAWANDE: And he said yes!
PAUL HOLDENGRÄBER: And I said yes! (applause) I mean, I’m always ready to
talk about death and dying and I thought this was you know a cheery subject for our
audience.
ATUL GAWANDE: What better at the beginning of spring?
PAUL HOLDENGRÄBER: We should go ahead with it. Now one of the things that I
find most daunting and haunting about your piece is the way in which you articulate what
I would call the notion that modern medicine, perhaps our modern times now, have
robbed us of our own deaths, and the words may be strong, but I think in effect, in some
form or fashion, this is what you say. What we do only once in our lifetime is taken away
from us.
ATUL GAWANDE: It’s not too strong. We’ve taken what was traditionally an
experience that was in our control, in our families’ control, it was in our homes. It was
governed by family, by community, and by religion, and we handed it over to medicine,
and it’s been this half-century experiment with what happens when you do that, and what
we’ve done is handed over to lots of people like me, who have certain tools at our
disposal. Doctors have ICUs and we have lots of medical technologies and a variety of
things that help us meet certain purposes, like trying to see if we can make sure we can
live as long as possible. But I think it’s proving to have been a failure in major ways. We
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are not successful in meeting the range of needs that people have towards the end of life,
needs that they voice in study after study and surveys, that are not only that I want my
best chance at living as long a life as possible but also that when I face death that I have
some independence, I have some control as much as possible, that I get to be with family.
Many people consider it important to have the touch of other human beings that they be
mentally aware. Some people want to be as mentally aware as possible—other people
don’t want to be as mentally aware as possible. We never ask you, which one are you?
And the signs are that over and over again we fail them, and most people. Death is
miserable, and we have handed over to medicine and we’ve failed helping people meet
their concerns at the end of life.
PAUL HOLDENGRÄBER: You said death is miserable. In some way it’s unbearable.
ATUL GAWANDE: The hardest—so you know I wrote the article not because I knew
anything about what I thought about it. What I knew was—a lot of the surgery I do is for
cancer patients—and what I knew was over and over again it felt like I was not very
successful for them beyond, you know, what I could do surgically, and it was these
incredibly fraught discussions. You know, do I tell them? How much do I push about
what their prognosis is, and things like that. And when I started—so the article takes a
thirty-eight-year-old patient of mine, a thirty-four-year-old patient of mine, whom we
diagnosed with an advanced lung cancer during the eighth month of her pregnancy. And
it was incurable. The average life expectancy is about a year when that happens and we
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walked her through four different rounds of chemotherapy and radiation and just, you
know, misery after misery.
At the same time, she was incredibly optimistic, a fighter, wanted to move ahead, but I
felt we’d failed her, and when I started talking through it with some other people like
palliative care specialists who see hundreds of people, they—one in particular, Susan
Block, said to me that what you have to understand is people are negotiating an enormous
anxiety about what’s to come. And when you say “unbearable,” that’s exactly it. It is
being able to help people through the tremendous anxiety of everything they’re facing
and all they’re burdened with, and when you’ve handed over this whole experience to
medicine, and all we want to deal with is one corner of that anxiety—“Can I live a little
longer?” It’s no surprise that the families who have taken family members through this
experience, just find it’s been utterly miserable and not peaceful until we’ve developed
some options, other ways of trying to deal with it.
PAUL HOLDENGRÄBER: I mean the word—I think you understood it that way—I
mean the word “unbearable” quite literally. In rereading your great essay I came across a
piece that David Rieff, the son of Susan Sontag, wrote in the Guardian after writing a
memoir about his mother, and he says, “but no amount of familiarity could lessen the
degree to which the idea of death was unbearable to her. In her eyes, mortality seemed as
unjust as murder. Subjectively there was simply no way she could ever accept it.”
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ATUL GAWANDE: When I have to break the news of an incurable cancer—Or actually
the more difficult time is when someone has come to the emergency room with a crisis
from a terminal illness that they had successfully fought through previous crises before.
They’d been through the first round of chemotherapy for that advanced cancer, or they
had the congestive heart failure and had had three pneumonias that they’d gotten through
before, but this time they’ve got a new problem, and it’s not clear that this time is going
to be the time they’re going to make their way through it. Those are the moments when
you sit down, and you try to figure out how you have a conversation about this and it’s
always incredibly pressured, and you realize they hadn’t contemplated this moment at all.
They hadn’t prepared for it. They hadn’t thought about it. They’re often at this point, you
know, they’re short of breath, they’re delirious, they’re getting pain medication and so
unable to think much further, and still, you have different reactions, but a fair number of
people for whom they cannot imagine that this might be the week or the day. They’re not
ready for it. It’s not bearable, they don’t want to have that discussion. It’s not possible.
And in the throes of crisis it often isn’t simply possible. It’s not just impossible for them.
It’s impossible sometimes for the family members and—and so, you know, often the
reaction among medical people is, “Well, the problem is Americans. You know,
Americans are in denial of mortality. We think we can live forever. With my work with
the World Health Organization, I’ve been lucky and gotten to go to many places around
the world. And it turns out when you go to lots of places around the world. They expect
to live forever, too. (laughter) They don’t want to die. It doesn’t turn out to be all that
different.
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PAUL HOLDENGRÄBER: What is it about us humans that we want to continue
forever?
ATUL GAWANDE: Maybe that we’re human. I mean, you know, you can’t imagine the
extinguishing of yourself. It’s awful to contemplate. At the same time, there is—the only
way we are good at being able to deal with what life is going to throw at us is partly by
being willing to be prepared for it and imagine it and discuss it and think about it a little
bit. And the people who have have amazingly different experiences. And that’s what I
learned out of—
PAUL HOLDENGRÄBER: And that’s what you write about to a certain extent is—
ATUL GAWANDE: Paying attention to what the experiences are of people who do
differently. So there’s a really I think fundamentally important study from seven cancer
centers around the United States, where they looked at the care of people with Stage 4
cancers, advanced cancers, not curable. On average when they were interviewing the
patients and their families they were four months or less from death, and only one third
had had any discussion with their clinicians about their goals or wishes for the end of life.
And that third, however, where the clinician had had even the slightest conversation,
enough that they’d discussed a little bit about, you know, suppose the treatment doesn’t
work, what’s important to you or is there anything you want to think about? That third
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were less likely to die in the hospital, less likely to die in intensive care, less likely to
have, you know, CPR when their heart finally stopped, less likely to have suffered. They
then surveyed the families about the experience, and those patients had less suffering,
more likely to have chosen hospice for the final stage, and the really interesting part was
that six months later, their caregivers were three times less likely to have major
depression. They were less likely to have suffered as well.
Now, we think that that choice of talking about what might come with death or choosing
hospice or things like that means that they’re giving up on life, but there have been a
number of studies, most recently last summer for the Mass General hospital, that show
that it’s almost the opposite. They did a study with advanced lung cancer patients where
they randomly sent half to see a palliative care specialist to talk about “What if the
treatment doesn’t work?” And these are all patients for whom it’s not going to work, and
still saw their oncologists. The others just saw their oncologists and went through care in
the usual way. The group that go the palliative care discussions. Less likely to end in the
hospital, less suffering, less intensive care, more likely to not take that third or fourth
round of chemotherapy, and the really fascinating thing in that study was they lived 25
percent longer. If having these discussions were a drug, the FDA would approve it as
lifesaving.
PAUL HOLDENGRÄBER: But it would seem that quite au contraire, these
conversations don’t happen. And they don’t happen for a number of reasons and they are
actually very hard, I mean, one of the things that I find the most powerful in “Letting Go”
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is that you admit at several times during the essay that you also are wanting to speak to
the patient but instead you are—as Rieff talks about his mother, morally cheerleading
them also.
ATUL GAWANDE: Sara Monopoli comes to my office with her baby in the carriage
coming along, each time less well, but she was coming to see me not for her lung
cancer—she had her thoracic surgeon, she had her oncologist. She was seeing me
because in the workup of her lung cancer, it was found she had a second cancer, a cancer
of her thyroid, which was a curable cancer. And she was seeing me because this cancer
had spread throughout her neck and was operable and the discussion was, “So, are we
going to operate?”
And the thyroid cancer would have taken five or ten years to kill her, whereas the lung
cancer, she just—the thyroid cancer was never going to be something that was going to
hurt her life. She had no symptoms from it, she had no pain from it. And so my—when I
met her the discussion should have been, “Well, with the reality of the lung cancer, you
shouldn’t have—I wouldn’t recommend the operation, you wouldn’t need it.” But in
order for me to come to the right decision, which is not to put her through what would
have been a big operation, given the spread of the thyroid cancer in her neck—in order to
arrive at that, I had to confront her lung cancer and have a discussion about what the
reality of what the reality of that was, and I was not comfortable having that.
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She’s tremendously upbeat, and she’s charming, and she’s got her makeup, and she’s put
on her dress perfectly for the appointment. She’s eternally optimistic, every time she
comes in, you know, it’s “We can do this.” Her husband’s business, he’s “What do we do
next? What’s the next plan here?” And the baby’s—you know, they’re rocking the baby,
and I’m going to say, “You’re not going to live long enough for this cancer to make a
difference.” It was far easier for me to chicken out of that conversation, and I did.
I tried to find a way in between. I said, “Well, I don’t want to halt the chemotherapy for
your lung cancer right now for your thyroid cancer, so why don’t I have you come back
in six weeks, we’ll see how your chemotherapy’s doing, and then we’ll make a plan for
operating on you in two months. You know, we’ll see you, we’ll make the plans, it’ll be
great.” And I basically stalled like that, appointment after appointment, until it was
obvious that we were nearing the end, and we just kept rescheduling her operation for a
little while later, “Oh, you know, you’re not breathing so well at this time, maybe we
should think about—put it off for another couple of months.”
And what we all did in our silos, the oncology specialist, the thoracic surgeon, we all
dealt with our own little corner of the issue, found it hard to push up against her
optimism. Even though we all did say to her, “We know the lung cancer is incurable,” so
we’re just—This is a statement you’ll hear a lot from doctors. It’s a kind of mantra, we
say, “Your disease isn’t curable, but it is treatable,” and then we talk about, you know,
the ways in which we might be able to get a little more time with this and a little more
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time with that, and so we do that dance without quite coming to the discussion of, “Okay,
what happens? How do we prepare for the moment when it won’t work?”
PAUL HOLDENGRÄBER: In your book Better you have this line, “In a way, our task
is to always fight, but our fight is not always to do more, it is to do right by our patients,
even though what is right is not always clear.” This is what you’re describing here or
grappling with.
ATUL GAWANDE: In the essay I tried to think about that metaphor of fighting again,
and I used the metaphor of the general. That you want to fight, but what do you do in the
face of an enemy with superior forces, an enemy who is going to win? There is Custer
who went, fought to the point of total annihilation, and he’s held up as an example of a
general who was a failed general because he had—he had done more damage to his
troops by doing that than would have been incurred otherwise. We contrast that with
General Lee in the Civil War, who knew when there was time to fight for whatever
territory you could get and then knew when there was time that you needed to let go.
Sometimes even with, you know, other people saying, “That’s the mistake, that’s the
wrong move,” but he spared his—
PAUL HOLDENGRÄBER: Sometimes you don’t send your soldiers into battle. In this
particular case, the medical field, it would mean what?
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ATUL GAWANDE: What it would mean is being able to talk through the concept of
letting go and the best way to understand it I think is understanding it doesn’t mean doing
nothing. I didn’t really understand that until I went walking around with a hospice nurse
who did her job day to day. And she was incredible. You know, I’ve sent the occasional
person to—in fact, in the article, I wrote about her, and her name was Sarah Creed, and I
didn’t give her age, because I didn’t think anybody would believe it. She was twentyseven.
PAUL HOLDENGRÄBER: She doesn’t appear that way at all.
ATUL GAWANDE: No, she was incredibly wise. You would go with her to the door of
a patient who she’d been caring for, whatever it was—a firefighter who had a pancreatic
cancer, had gone through three different rounds of treatment, just this horrendous course,
clearly pulled and extended beyond anywhere they should have gone. He was in terrible
pain, difficulty breathing, hadn’t received adequate pain medication in weeks.
PAUL HOLDENGRÄBER: Married to another firefighter.
ATUL GAWANDE: Married to another firefighter who was—you know, fighters.
PAUL HOLDENGRÄBER: Real fighters, yeah.
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ATUL GAWANDE: And they get home when all the treatments, you know, everyone at
the hospital finally said, “Well, we don’t have anything more,” and went home to die and,
you know, fought might be a couple of day and she walks into the situation and her
immediate response is, “There’s almost nothing—I should have been here a week ago, I
could have helped him, let me take this from what we’ve got and just move forward.”
And one of the things was the firefighter was afraid of taking the pain medication. He
said, “It feels like defeat.” And she got down in her knees in front of him and said,
“You’ve got a beautiful wife and a beautiful daughter,” who was as we’re having this
conversation walking in and out of the room, she’s four years old, and depositing little
stuffed animals in his lap, one by one, a little menagerie accumulating. She said, “In pain,
you cannot be with them. You can’t be who you want to be. Press the button.” He pressed
the button. He became willing to at least take the pain medication to get through it.
He lived another week after that, he improved enough that he actually got out of the
house and they were able to go to a favorite restaurant that he and his wife had always
had. He couldn’t eat. He didn’t want to eat anything. He was just absorbing what it was
like to be there, and that was his first moment out of a hospital bed, not in a hospital, in
months. And what’s really striking about that concept is not only her wisdom or what she
could manage to do, but the tools that she brought were different from the tools that I
bring as a doctor. The tools that she brought were ones for—you know, in medicine, what
we do is we say, “Wow much suffering would you—? We’re going to put you through
some suffering now for the sake of time later. Let’s gamble on the time you’re going to
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get later.” And they walk in the door and they say, “What do we need to do to make you
happy today?”
PAUL HOLDENGRÄBER: Now. The present time.
ATUL GAWANDE: Now, today is the day. And whatever life has dealt us, what do we
want to live for today?
PAUL HOLDENGRÄBER: So to go back to those two generals, one who gives up is in
fact choosing a quality of life for his troops which is much better.
ATUL GAWANDE: He’s saying, “What is the best we can do today?”
PAUL HOLDENGRÄBER: Today. And what the best we can do today, your article
proposes, is perhaps in certain situations choose hospice.
ATUL GAWANDE: You know, the striking thing about hospice to me was I thought of
them as the black-hooded people who came around with morphine injections. And we
walked in to see Lee Cox, who was this seventy-two-year-old woman with congestive
heart failure who’d had multiple hospital admissions for getting more and more short of
breath. She was on oxygen at home, she was sent home with a few weeks to live, and
Sarah Creed came to see her. She was, you know, has a twenty-foot-long oxygen tubing
tether to her nose and comes up to the door, and she’s getting some chest pain that day,
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and she’s having some particular difficulties. And Sarah does some—instead of just
saying, “well, let’s give you some morphine for that pain,” she does some detective work
and figures out that her medications hadn’t been filled, and she had run out of her heart
pills, and that her nebulizer machine wasn’t working properly. And arranges for someone
to fix the nebulizing machine and get the heart pills, and I said to her when we left, I said,
“That was confusing to me. I thought the goal of hospice was to let nature take its course.
Why were you trying to fix her breathing and fix her heart medications and all that kind
of thing?” She said, “No, the goal is help her live the best possible day she can have
today.” And day by day they did that to the point she lived a year on hospice. The
average congestive heart failure patient on hospice lives three months longer than the
congestive heart failure patients in the same condition without hospice. And it’s really
striking. It’s almost zen. By not asking that you live longer, you might live longer.
PAUL HOLDENGRÄBER: One of the aspects of your article that I find also
tremendously haunting is that you repeat several times that we don’t know what dying is
really. We don’t really know. We both don’t understanding and we don’t know in our
modern world today what dying means, which I think is—
ATUL GAWANDE: Science has changed it and changed it so fundamentally it’s harder
to understand what the term means, and I mean it by this. For most of history, sickness
came on unpredictably and what happened tended to happen in most cases—leave
tuberculosis aside and a couple of other conditions, but for most people came quickly. I
mean, George Washington got strep throat and died twenty-four hours later.
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PAUL HOLDENGRÄBER: I was just about to say, you go through various presidents
to tell us how quickly they died. It was very ingenuous of you to choose the presidents.
Some of them died slower, but many of them died very quickly.
ATUL GAWANDE: And from things that you would now be able to turn into a nicely
long drawn out course. And so if you have a terminal cancer now, where before it
wouldn’t get picked up until its late stage, and then you’d usually pass in a matter of days
to weeks, now we pick it up early, start treating it in certain ways. And so are you dying?
Or when are you dying? You have a terminal cancer where the average survival is three
years. So when did you start dying and when did you not start dying?
I tell the story of a patient I had who was a woman who had a horrendous range of
problems. She had a ruptured intestine from an infection that started the whole thing, but,
and in the surgery, in the operation we were able to take care of that problem and stop it,
but she was so sick, she had a heart attack in the course of events, and then her blood
pressure was so low that she ended up losing circulation to her leg and got gangrene of
her leg, and then she was in respiratory failure, so we got her through, you know, after a
couple of weeks in the intensive care unit, became clear she was going to need to—I was
going to need to amputate her leg and give her a tracheostomy and a feeding tube and that
her abdomen was wide open and it would take weeks of IV nutrition. And so I met with
her family, her sisters, to ask should we go through with the amputation and the breathing
tube and the tracheotomy? And they asked, “Is she dying?”
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I—we would—I can tell you we could have kept her going for months. So I didn’t even
know how you answer that question anymore. It depends. And so our language is not
evolved—There are many things that have not evolved to keep up with what the
experience of an advanced illness is like now. Our language. Our traditions. There was a
whole set of rituals around what happens. There was a deathbed ritual.
PAUL HOLDENGRÄBER: The Ars moriendi, you speak about that briefly.
ATUL GAWANDE: Yes, the Ars moriendi, as I mispronounce it.
(laughter)
PAUL HOLDENGRÄBER: You know, my Latin, my pronunciation may not be
perfect. Who am I to speak about pronunciation anyway, you know? But if you want to
say Ars moriendi, please do.
ATUL GAWANDE: Okay.
PAUL HOLDENGRÄBER: Okay.
ATUL GAWANDE: So is the title of a book that came out in 1451, went through dozens
of languages and editions and was incredibly popular and it was a guidebook for the art
of dying. And the art of dying included certain rituals to bring—for a family member,
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that you make sure that they have their last confession, that they work at acknowledging
their sins, that they give up their worldly possessions, that they embrace God, that the
family is at the bedside, that there are last words, and you want to have the wisdom of the
last words.
PAUL HOLDENGRÄBER: I think that’s so interesting. In the article you come back to
that two or three times, about people who are robbed of their last words. We don’t
anymore have this tradition, it would seem, of the wisdom of transmitting last words. I
mean, there’s a whole literature about that, sometimes a very funny one, as you know,
Oscar Wilde, who said, “either the wallpaper goes or I go.”
ATUL GAWANDE: A lot of it embellished.
PAUL HOLDENGRÄBER: Of course.
ATUL GAWANDE: Well, exactly, and it’s a strange thing. We have more time, so you
might think we would have—
PAUL HOLDENGRÄBER: We might even have too much time.
ATUL GAWANDE: You might think we might have developed even more around it.
But instead because we are in denial of the possibility that this might be the moment, we
don’t want to even record the ideas, that’s problem number one. Problem number two is
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we’ve tubed and drugged people to the point of oblivion so that they’re incoherent for
days and weeks sometimes before the end, and we’ve turned it into a hospital experience
where the attendants are the nurse and maybe the doctor. You’re not quite sure, you
know. How many times is it that I’ve had a patient pass away and it’s all about calling the
family up at home and telling them, “Yes, last night, they did pass away,” and they had
missed it all.
Imagine yourself. You go to the intensive care unit and you see the families together, and
what you have to imagine is that this person came into the hospital not knowing that this
is the end, not prepared to say “I love you” or “I’m sorry” or any of those things, all of
those unsaid things that you want to say before you go. And the husband is sitting with
the wife who is now tubed and completely out and now not coming back and only slowly
dawning and then it’s gone, it’s all happened, and it’s happened so traumatically that it’s
not surprising that people are three times more likely to be severely depressed six months
later.
Joan Didion’s Year of Magical Thinking was in part the reflection of someone who’d
gone through tremendous grief because in her case, her husband died just sitting right at
the table with a massive heart attack and suddenly was gone and taken away. That’s
another way that in former times, you could suddenly go, it’s much less likely today, but
in a certain way people grieved then more violently as well for the similar reason—you
didn’t have that chance for connection.
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PAUL HOLDENGRÄBER: There’s a well-known French historian named Philippe
Ariès, who wrote a big massive book on man confronting death and he wrote a series of
lectures also called Western Attitudes toward Death in which he says, “thus that is calmly
that people die in the course of centuries or millennia, this ancient attitude for which
death was familiar, close and softened, indifferent in one, contrasts abruptly to our own in
which death arouses fear in us to the point that we no longer dare to call it by its name.
That is why I call that familiar death ‘tame death.’ I do not mean by that that it had earlier
been wild. I mean on the contrary that it has become wild today.”
ATUL GAWANDE: I have to say that I react to that partly by being a little contrarian
about it. I mean, I don’t want to idealize death in the past. It was sometimes violent,
sometimes horrendous, sometimes, you know, it’s a full variety of experience. Part of the
point to me is that we’ve changed death. We’ve made it a long drawn-out experience,
made the nursing home your most common—well, made the hospital your most common
likely last address and if not that then the nursing home, and we’ve turned the most likely
way we go now is by having an illness that we can at the beginning treat and then can’t
and that it takes a long time. It’s a long process.
And that is life, then. This is part of our experience. It is a significant part of our
experience, both as family members going through this with parents, siblings, even
sometimes our children, and we have not embraced the concept that there is life to be
lived in that time. There are things that are worth doing, worth going for. It’s interesting,
you know, you have these movies like The Bucket List which have this idea, like, “yes,
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the doctors told me I have nine months to live and so, you know, let’s get these eighteen
things done.” And the truth of the matter is we never want to give you that prognosis
because we’re afraid we’re going to be wrong and then, “He said I was going to live six
months and I lived twelve months.” And, you know, that partly not wanting to be wrong
especially in the wrong direction kind of thing and then the fact that treatment itself
weakens you, the disease weakens you. It is a wild course. But devoid of all those things
that are meaningful. And I think part of the experience of seeing what people who have
chosen hospice, which is only a minority of Americans.
PAUL HOLDENGRÄBER: What is the percentage?
ATUL GAWANDE: It’s between 25 and 30 percent who choose hospice and most only
in the very last few days when it can’t do very much. I think the average is around four
days before death, whereas the folks who have chosen in the later stages, when it can still
be helpful are people who have started to turn the question not towards—not towards the
idea that there isn’t a possibility—they haven’t—you may have not given up on the
possibility that something might happen, but at least have said to themselves, “well,
there’s a very likely thing that’s about to happen, and I at least want to live as well as I
can in the face of it. At minimum with less pain and less suffering and ideally with just
some more control over the circumstances, in my own home with the people I want to be
with, not riding ambulances back and forth.”
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I wrote an article about McAllen, Texas, the most expensive county for health care in the
country, and for a sixty-five-year-old or older there the average cost is $16,000 per
person per year compared to $8,000 per person per year and one of the things that very
expensive there is end-of-life costs, and I came to recognize what one my colleagues has
created as an ambulance-to-hospice ratio. So in Portland, Oregon, the ambulance to
hospice ratio’s about one to one. That is, in the last year of life it’s about $500 on average
in ambulance rides and $500 in hospice costs and in McAllen, Texas, it’s $3,000 in
ambulance rides and only $22 in hospice costs. And you can imagine the picture of it,
that you’re spending that time riding ambulances back and forth between the hospital as
opposed to how much of that resource is spent on being at home.
PAUL HOLDENGRÄBER: That precious time. I was rereading a book by Walter
Kaufmann, a philosopher, wrote called The Faith of a Heretic, and he says, “as one
deserves a good night’s sleep one also deserves to die. Why should I hope to wake again?
To do what I have not done in the time I’ve had. All of us have so much more time than
we use well.” And I wonder how you react to something like that. And Seneca said
something not dissimilar.
ATUL GAWANDE: Not too well, because I still want to live forever. (laughter) But the
finiteness of time is the theme of all of our lives. It’s all governed around the idea that
how do you make the most of what you have? And we all try to remind ourselves about
that, try to remember while we’re instead spending all our time BlackBerrying, which I
seem to do. The—the—I don’t know, the ability to remind yourself. I don’t want to spend
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all my life thinking about the fact I’m going to die. You want to simply live life and take
it as it comes, and when it comes to what that moment of reality that you’re going to face,
death, is about, I think it’s less about the idea that “yes, I’m going to die.” I think
intellectually and even in our bones we know that’s going to happen. And with the
patients—
PAUL HOLDENGRÄBER: It’s a funny knowledge, right? It’s a knowledge that
doesn’t acknowledge itself completely as knowledge.
ATUL GAWANDE: What do you mean by that?
PAUL HOLDENGRÄBER: I think we—you know, when a French philosopher, when
Sartre said that it’s always the other who dies. I think he was right in some way. We only
think it’s other people who die and not us. We somehow—
ATUL GAWANDE: Well, this gets at this idea that I wrote about in the piece that none
of us have any practice at it.
PAUL HOLDENGRÄBER: Right. We do it—You say it. You say it quite clearly, quite
pungently, you say we die once.
ATUL GAWANDE: You only die once and therefore it’s not an experience we
recognize or quite imagine for ourselves and doesn’t seem relevant to us. It seems plenty
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relevant to other people, but, you know, what’s the reason that I might not be different
from anybody else? Maybe I’m different. It’s possible. You can’t scientifically prove I’m
not different. (laughter) But—
PAUL HOLDENGRÄBER: Nevertheless.
ATUL GAWANDE: Nevertheless.
PAUL HOLDENGRÄBER: Nevertheless, you and I are going to die. My mother
always told me when I was growing up, that living is dangerous, and the outcome is
always fatal, (laughter) and so, you know, there is that aspect to it but somehow we push
it aside. We really push it aside.
ATUL GAWANDE: And maybe we do it to get through the day, but I think that—
PAUL HOLDENGRÄBER: But at the same time—yes, we do it to get through the day.
We do it in order to BlackBerry, and I have the same problem you do, my children no
longer think that a blackberry is a fruit, I mean, it’s the same kind of issue and problem
one might say. Nevertheless, to some extent, I think, what you’re also trying to urge us to
think about is to think about death and in some way you’re not far removed from Cicero’s
great comment that to philosophize is to learn how to die. In some way we need to think
about it.
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ATUL GAWANDE: So earlier on, you were talking about the idea that, you know,
there’s a moment when you might want to read the essay. And I think that gets at an idea,
that it’s impossible to prepare for the long run. Its part of the reason why living wills are
so ineffectual. They are, you know, a legal tool to—and it’s helpful for you to fill out a
living will that expresses your wishes for when the time may come, you know, whether
you’d want to be sustained with heroic means or not, but it is so removed from the
moment when you have to think about crises, that it usually is very difficult to apply.
When a family member brings in the living will, it usually isn’t able to help us in that
moment, because we don’t know what is in that person’s head closer to the time when
crisis comes.
And so my best way of thinking about it is that there are moments when this conversation
and these thoughts become very relevant. It’s not at a random moment; it’s not trying to
think about it constantly through your life. I don’t know how I would get through my life
trying to think about it. But when you have been, you know, on some simple level, yes,
the conversation that I have with my wife, you know, my wife is like, “Do not unplug
me,” and I say, “you know, if my brain is not working, you’d better unplug me,” but
beyond that there will come a moment where I will have some sort of illness that is not
going to be curable, and I’ll feel fine. We’ll go through an initial treatment, and it will
buy me some time, but if I just wait until the crisis comes, and I’m in an ambulance
unable to breathe, and we’re headed to the emergency room and the question is do I want
to be on a ventilator or not, because suppose I could get through it this time, it’s
pneumonia, maybe I will, maybe I won’t. The moments when you want to have that
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discussion are in the kind of before that happens. It’s too late if it’s the ambulance ride
and it’s too early if it’s twenty years beforehand, to really imagine it, and so there are
almost trigger points. It’s when you need oxygen at home and you have a congestive
heart failure. It’s when that first round of chemotherapy didn’t work. And yes, we’re
going to consider a second round, and maybe a third round, and maybe radiation. But
now is the moment when the signs are that this may not—we’re potentially not winning
here. With an Alzheimer’s patient, it’s when early memory loss starts to appear, but
before you’ve lost contact with the world. And that’s when you ask certain questions that
we don’t ask.
PAUL HOLDENGRÄBER: What would those questions be?
ATUL GAWANDE: There were four that Susan Block, who I mentioned earlier, the
palliative care doctor, told me were the ones that people need but they don’t get. Number
one do you know what your prognosis is? What do you understand about your prognosis?
Number two was if you should get sicker what are your biggest fears and concerns?
Number three was what are your—if you continue to get sicker, what are your goals?
And number four was how much suffering are you willing to go through for the sake of
more time. Since I wrote the article, it’s changed my practice. I’ve started using these
questions with patients and I’ve been shocked at how transformative they are.
I had a patient come in with a colon cancer that had spread throughout her abdomen. And
she had gotten through two rounds of chemotherapy that had given her far longer than
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anyone thought she’d get. She got seven years with advanced colon cancer. But here was
the day she’d come into the emergency room and she couldn’t eat anymore. She was
throwing up because her tumor had reached a size it had blocked up her valve, and there
was no chemotherapy anymore, there was no radiation, so they call on the surgeon and
say, “Well, can you try to go in and see if you can hook something to something?” And it
rarely works. And then you’re left with recovering from a major operation. Often—
sometimes the tumor grows out of the wound and becomes a mess that becomes very
difficult, and so we had this conversation. But I’ve never been in that position where I
could talk them out of going to surgery, usually they end up going.
So we had this discussion. I said, “Do you know your prognosis?” And she said, “I don’t
expect to have a lot of time now. But I don’t know, weeks, months, I don’t know.” I said,
“What are your biggest fears?” She said, she indicated she had two big fears. Fear
number one was that she wouldn’t be able to go home, that she wouldn’t be independent,
that she wouldn’t be in control of her life. She was a former dancer and just felt that she
needed to be in control. And her number two concern was that she’d be a burden on her
family and on her daughter in particular.
I said, “What are your goals?” She said, “I don’t have any particular goals. Just that if I’m
going to get sicker I don’t want to be here. I suppose,” she said, “I suppose I’d want to be
with my family.” I said, “How much suffering are you willing to go through for the sake
of some extra time?” “None.” Had enough suffering. Tired of this last six months of
being in and out of the hospital.
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And that helped me then say, “I have a recommendation for you. If those are your goals,
if that’s what’s important to you, I don’t think our going to the operating room is going to
be the helpful way to go. We can do some things to make it so that you’re not sick and
throwing up. We can do some things to make sure that you’re not in pain.” And she chose
hospice out of that and was able to be in control, was able to torment her daughter, whose
living room she took over, and it was that conversation that we don’t have. Family
members don’t have. Other people don’t have. Clinicians especially.
PAUL HOLDENGRÄBER: Most surprising it comes to my mind as you’re telling this,
a most surprising story in “Letting Go,” of a man who used to be a university professor.
ATUL GAWANDE: This is Susan Block’s dad. Yes, so here was the palliative care
specialist.
PAUL HOLDENGRÄBER: It’s extraordinary. I mean, I was so surprised. I mean—Tell
it. I was so surprised by what he what he felt was the goal, because he did have a goal.
ATUL GAWANDE: Yeah, yeah. So this was the palliative care physician, who had
spoken to, you know, speaks to a hundred people a year facing these questions. And her
own father developed a tumor in his spinal cord which was going to require this extensive
operation with a major chance that it could leave him quadriplegic. She was his health
care proxy, his decision maker if he couldn’t make the decisions. It was the night before
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surgery, and she went out to California to spend time with him, he was a psychology
professor, and they—they just chatted about this and that and family came and went, and
she just felt she’d had some great quality time, and then she got in the car and drove
across the Bay Bridge to her family home for the night and halfway across the Bay
Bridge, realized she didn’t have the conversation. She didn’t know what he would want,
so she turned the car around. She said, “You know, of all people I’ve got to have this
conversation.”
And went back and asked those questions, and the most telling one was, if he should get
sicker, if bad things should happen, what would he want to live for? What’s really
important to him? And he said, “As long as I can watch football on television and eat
chocolate ice cream, that would be enough to live for,” (laughter) and it floored her.
Because he was this emeritus psychology professor, and she’d never seen him watch
football ever. No idea that late in life he was a football fan suddenly and chocolate ice
cream.
But then he went through the surgery, seemed to go well, but then developed bleeding
afterwards, and they were going to need to take him back, and he was still groggy,
anesthetized, and they came to her and said, “We’re going to need to take him back, but
the bleeding has already caused him to become partially paralyzed, and he may well
come out of this quadriplegic, but we could save him, at least keep him alive, what do
you want to do?” And she knew. She said, “He already decided for me. She asked them,
will he be able to watch football on television and eat chocolate ice cream?” And they
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said they thought he probably would be able to. “Okay, then go ahead.” And he did. He
was quadriplegic, not totally paralyzed, he had just enough hand function to over the next
seven years write two books and a dozen articles. It was actually when he at about seven
years lost the ability to eat chocolate ice cream, his swallowing problems became bad
enough that everything he ate went down the wrong way, and he had a series of
pneumonias, that he said, “no more.” And that set of questions, those puzzles. What
would you want? What is enough for you to want to live for and does your family and do
your clinicians know that that’s what you want? We don’t do that.
PAUL HOLDENGRÄBER: I was going to read to you a scene from a very favorite
book of mine, “The Death of Ivan Ilyich” of Tolstoy which describes a doctor. So I want
the doctor to comment on the writer describing the doctor. “At half past eleven, the
famous doctor arrived. Again there were osculations and significant conversations in his
presence and in the next room about the kidney, about the appendix, and questions and
answers with such a significant air that again instead of the real question of life and death
which now alone confronted him there reemerged a question of the kidney and the
appendix, which were not behaving as they should, and for which Mikhail Danilovich
and the famous doctor were about to fall upon them and make them mend their ways.
“The famous doctor took his leave with a serious but not hopeless air and to the timid
question which Ivan Ilyich addressed to him, raising his eyes, glittering with fear and
hope, whether there was a possibility of recovery, he replied that though he could not
vouch for it there was such a possibility. The hopeful look with which Ivan Ilyich saw the
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doctor off was so pitiful that on seeing it, Praskóvya Fëdorovna, his wife, even burst into
tears as she came out of the study to hand the famous doctor his honorarium.”
So does this scene, is it true to you?
ATUL GAWANDE: It’s an amazing short story or novella—I guess it’s a short story or
novella, somewhere in between, and is taught to many students, I read it as a medical
student as well, in hope that we were able to get that sense of the aloneness of the person
who is with a fatal illness—the struggles they go through to acknowledge and not
acknowledge. And the psychological acuteness of Dostoevsky in recognizing what the
experience of dying is like. And the thing that came across to me the most, that stuck
with me the most, is the sense of aloneness that the person felt, that no one was able to
connect with him. They were always connecting with parts instead of the person. There
was the way his wife was focused on not him and understanding him but instead their
usual issues, the way the doctor was with the kidney and the appendix.
And it is strikingly familiar, isn’t it? And that’s the sense in which I said I don’t want to
romanticize the past or idealize the past, it’s just that the nature of illness changed the
time course of what happened and that led to certain rituals and ways we dealt with things
that still offered some control in a way that we have taken away. That if we want to
reclaim life, we have to reclaim death, and if we want to not be alone, we have the
possibility, we have great experience and wisdom that has developed over time that mean
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that people don’t have to be Ivan Ilyich in that last phase, but we in medicine have not
made it any easier.
PAUL HOLDENGRÄBER: Do you sympathize at all with the doctor in this story?
ATUL GAWANDE: Yes, it’s me. There are many, many moments when—you know,
I’m not a writer when I’m at work. When I’m at work I’m in a twenty-minute visit where
I’ve got eighteen people stacked up and I’ve got to get through from one thing to the
next.
PAUL HOLDENGRÄBER: So you don’t have the time for the conversation.
ATUL GAWANDE: You think you don’t. You think you don’t. And it does take time.
As I’ve become—you know, in many ways, writing is my way of thinking out loud and
working through problems and having worked through this and then begun talking to
patients in a different way, first of all, some of the most meaningful conversations and
experiences in medicine have come out of my experiences since then, which is surprising
to me, because most of what you enjoy and become satisfied in medicine about are your
competencies, your ways in which you are able to fix something, and here is something
unfixable but you start feeling competent about how you can help someone who has an
unfixable problem, that you can help them arrive at what the goals might be in the face of
that. And then, yes, what often takes the longest time is the family. The patients are the
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readiest to have that conversation and work their way through it, but they haven’t gotten
there, they’re not.
PAUL HOLDENGRÄBER: You mention this in the article. So many of the operations
happen because the family says there must be something else that can be done. There
must be something else that you can do for my father, my mother, my sister, my brother,
somebody close to me.
ATUL GAWANDE: Yes, in a family meeting, in a room of three or four people, the
dynamic that often occurs is that there is a person who will say, “You’re not going to
unplug—you’re not unplugging Ma, are you?” And all the gravity in that room then
moves to that person. The sense that there’s no response to be had to that, or surely
there’s something that we can do. People in a family don’t want to fight against that. And
also these moments bring out the worst in families. I mean, these are among the most
stressful experiences, and all families have their issues and so it brings out those issues
and one of the most striking things that also come out from the surveys of patients is that
around two thirds to three quarters would rather take a treatment they do not want if their
family wants it than make their family go through the experience of not.
PAUL HOLDENGRÄBER: So they don’t want to cause pain.
ATUL GAWANDE: They don’t want to cause their family pain, and they’d rather suffer
themselves.
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PAUL HOLDENGRÄBER: And yet doctors at times cause pain and the whole oath you
sign to become a doctor is thou shall not cause pain to others.
ATUL GAWANDE: No, as a surgeon I’m not signing that oath. (laughter) But the do
no harm concept, and even then you’re doing harm for the sake of a bet that in the long
run it will be good for you. And with a patient with terminal illness that’s a much more
complicated concept and idea. But, yes, you are causing pain for family. It’s an
interesting problem. You may be able to—I told the story in there as well of a young man
with a brain tumor who fails finally—I don’t want to say fails, it’s a bad word—whose
disease progresses despite three rounds of different kinds of treatment. And the question
to the oncologist was, “Surely there must be something more?”
And there is this concept that the Swedish talk about of a breakpoint discussion which is
a very formalized way that they try to have a discussion at a moment when you might
want to discuss whether this is a breakpoint, a moment when we might get off the
treadmill of the next treatment. And that discussion they went through with this patient of
saying, “Yes, well, there may be these other kinds of treatments,” but in her experience it
makes matters worse rather than better and he came to terms with that and then when
they had the family meeting one by one the wife the mother, came to terms with it, but
the father was silent throughout, and then at home made it very clear this oncologist is
missing something, there are things out there, did an Internet search, has a sheaf of trials
that could be done, things that could be brought. And the oncologist really found that her
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patient was the father and went so far as to go home to talk with the father and go through
every one of those sheets to see which one of these might work. Called a couple of the
trial people to see, “If this genuinely a patient who could apply for your trial?” And then
one by one walked through all of them to say, “this really, these are not likely hopeful,”
and then asked the father to help his son. That the most important thing he needed from
the father was his strength for him as he faces what is coming, and they had a
transformed month because of the time and the investment to get there.
PAUL HOLDENGRÄBER: Here we’re coming back to what we were missing at the
beginning. Here we’re coming back to the possibility of actually having a meaningful
conversation, of spending those last moments together, really together, instead of
spending those last moments with machines.
ATUL GAWANDE: The really interesting thing about this, and Dostoevsky was getting
at this as well, is that one of—the most powerful tool in all of this is mere conversation
and it’s almost—we almost don’t believe it. We don’t believe it. We don’t believe it in
medicine.
PAUL HOLDENGRÄBER: I promise you I believe in it.
ATUL GAWANDE: We don’t believe it in medicine, we don’t believe it in policy, we,
we—
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PAUL HOLDENGRÄBER: We fear it.
ATUL GAWANDE: We fear it to the point that in the health care debate the concept of
giving doctors sufficient payment to have extra time for primary care doctors to have
these conversations was called “death panels” and nearly doomed all of health care until
they stripped out the provisions and guaranteed your doctor would not be paid to have
extra time to have these conversations with you. Very important. And the concept of this
is so powerful that the studies that I cited indicate the power of just having these
conversations before crisis comes because they reorient people and their families towards
what they’re really aiming for or what they want, how to make better choices, but the
experience also is we’re not good at it in medicine. We don’t train for it. We don’t—
We’re not practiced it. We haven’t actually studied them carefully to understand, you
know, what are the forms of conversation that are worse, what are better?
It’s been very interesting to me experimenting with the words I use with patients. I’ve
had, you know, real failure with some patients who walk out angry and feeling that I’ve
failed them and others where we’ve been able to build more effective trust, and I’m still
trying to understand it, but there is no question that the skill of conversation is something
that we underemphasize in our training. We get very good at the skill of technique, of
surgery and of our pharmacology and so on, of reading images, but not reading the
patient.
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PAUL HOLDENGRÄBER: And I’m interesting in closing to talk precisely about
reading. Earlier on today when we went to the special collections you were talking about
your love of Hemingway, and I know that in your operating room you have a poem, a
Sylvia Plath poem, why?
ATUL GAWANDE: “The Surgeon at 3 a.m.” Not in my operating room but in my
office. In both cases what—there’s an interesting connection between the two because in
both cases. Most art about doctors, most writing, is about doctors as heroes or as villains
and neither are exactly true. Doctors are flawed human beings like the rest of us, with the
bad jokes and the weak chin and things that they know and things that they don’t know,
and Hemingway captured it in Farewell to Arms and Sylvia Plath did in “The Surgeon at
3 a.m.” In A Farewell to Arms the main character is injured in the war, spends half the
book in an Italian war hospital, falls in love with a nurse who’s there, impregnates her,
she dies in childbirth at the end, sorry to give that away. (laughter)
But the fascinating thing was his depiction in the little side comments in the vignettes of
the people in the hospital and he had no fear of writing of the doctors simply as people as
they were, you know, sometimes admirable, sometimes absolutely not, you know,
annoying, flawed people who could do some things that were really, you know,
incredible despite the fact that they were pretty ordinary people and in many ways among
our best medical writers because of it. I mean, I admire Hemingway for his concision and
brevity and other things as well, I mean, he’s very old-fashioned to admire, I’m not
supposed to admire him, I think, but he was a moral writer in other ways as well. Sylvia
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Plath—in her poem I love the imagery and the ways in which she used imagery, and I
can’t come close to it, but I want things to be as visual when I write—I mean, I love the
ideas and I love the story I’m trying to tell and the ideas I’m trying to get across, but also
if it’s working I want you to feel what people are feeling.
PAUL HOLDENGRÄBER: You were saying that the Hemingway Farewell to Arms is
the perfect structure for you of a story told.
ATUL GAWANDE: Well, actually, we were talking about Orwell at that point.
PAUL HOLDENGRÄBER: Oh, I’m sorry—that’s true. That Orwell’s essays—you
read and reread them because they are the perfect structure of what an essay should be.
ATUL GAWANDE: They can be. They give me ideas for structure.
PAUL HOLDENGRÄBER: “To Kill an Elephant,” for instance.
ATUL GAWANDE: Yes, so I mean “To Kill an Elephant” was how a story of someone
assigned in I think it was Burma to—as a police officer to deal with a rampaging elephant
and how you use that story to get complicated ideas about what colonialism implies. I
mean, I don’t come close to doing what he managed to do in that essay, so I keep coming
back to it to see if I can come closer and closer.
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PAUL HOLDENGRÄBER: Two items in closing. You quote perhaps somewhat
favorably Stephen Jay Gould, a piece he wrote which is called “The Median Isn’t the
Message.” In closing, Stephen Jay Gould says, “It has become in my view a bit too
trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of
course I agree with the preacher of Ecclesiastes that there is a time to love and a time to
die, and when my skein runs out I hope to face the end calmly and in my own way. For
most situations, however, I prefer the more martial view that death is the ultimate enemy,
and I find nothing reproachable in those who rage mightily against the dying of the light.
“The swords of the battle are numerous and none more effective than humor. My death
was announced at a meeting of my colleagues in Scotland and I also experienced the
delicious pleasure of reading my obituary penned by one of my best friends. The so-andso got suspicious and checked. He too is a statistician and didn’t expect to find me so far
out on the right tail. Still, the incident provided my first good laugh after the diagnosis.
Just think. I almost got to repeat Mark Twain’s most famous line of all: ‘The reports of
my death are greatly exaggerated.’”
ATUL GAWANDE: Yes, a fantastic essay, and he is one of my heroes. When he was
diagnosed with a classically commonly fatal type of cancer, mesothelioma, you turn—he
went to the library—a Boston medical library—and looked up the information and the
median survival was, you know, under a year, it’s horrendous, but he’s a naturalist, and
so what he notices are the variations. And what he saw is there was a long tail of
survivors. There were some people who could live very, very long. And he said, “that
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where my hope is, that is where I can plan for.” And he in fact lived nineteen years after
his initial treatment, and I mentioned that I—in the essay—that I don’t fail to think of that
essay when I have a patient with a terminal illness that they might be in that long tail.
And yet I totally disagree with that essay.
PAUL HOLDENGRÄBER: I know. And why?
ATUL GAWANDE: And the reason why—
PAUL HOLDENGRÄBER: There is a critique—I mean, you don’t say it quite. And in
the essay you don’t say I totally disagree but one feels you are not in agreement.
ATUL GAWANDE: No. And the reason why is that, yes, we can hope for that tail but
hope is not a plan. It is not—in other words, the way—we have a multitrillion-dollar
edifice that has been devoted to buying you a lottery ticket. And yes, that lottery ticket
might win, and we want to buy that lottery ticket. Nothing wrong with buying that lottery
ticket. Take that first round of chemotherapy. Maybe the second round. But what we—
what it doesn’t mean that we can’t also be prepared for the possibility that that lottery
number will not come up after all. I don’t see it as mutually exclusive, that you rage
against the dying of the light, ask for everything that life can give you, grab for that
lottery ticket if you can while also thinking about what are the options—what do I do,
what do I want, if it doesn’t come up?
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PAUL HOLDENGRÄBER: And there’s a whole medical establishment based on that
long tail.
ATUL GAWANDE: And on ignoring the likelihood that you might not win the lottery
ticket. But one physician whom I really admire had a great way of putting it, when he
talks to patients about this and tries to find a way to balance this discussion. He says,
“Yes, you may beat the odds, and I’m going to do everything I can to help you so that
you and I together can be dancing in the office one day. But that also doesn’t mean that
we can’t talk about what happens if it doesn’t.”
PAUL HOLDENGRÄBER: Dying of the light. Of course Stephen Jay Gould is
mentioning or quoting a poem, a very, very famous poem by Dylan Thomas, “Do Not Go
Gentle into That Good Night.” Old age burn and rave at close of day, rage, rage against
the dying of the light. That poem is very famous, very well known, there is an anger also,
an anger of not giving up. Do you remember that poem?
ATUL GAWANDE: Yes, everybody remembers it for that famous line itself. None of
what I describe has to preclude that. The martial metaphors of the ways we take on
disease are not wrong. But I also think that there are the metaphors that help us
understand how we let go. Sometimes it’s the idea of the general against forces that are
overwhelming, but the concepts of being at peace with our circumstances, being at peace
with what life will give us and sometimes take from us has its own wisdom and its own
kind of maturity that we are learning as a society to work our way through. I think that in
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medicine it is a set of skills for being able to find—You know, it is a natural thing to
rage. It is what all of us will do at some point in our life and to—for us in medicine to
feel that well, it’s—that’s, you know, “people are the failure here, why can’t they just
recognize that you’re going to die and just accept it?” The reality is someone that’s
going—someone that you deal with in medicine is someone who is in denial at some
point along the way and will rage at the situation and so if we’re good at what we do,
we’re good at dealing with people, and it is not an excuse for us not to be able to offer
things that could help people with skill through those situations. The conversation with a
patient and their family about their illness is a procedure no less than the procedure that I
do in surgery. I spent years to learn how to do this procedure. And there’s no reason we
shouldn’t be able to be skilled at this other one that’s as meaningful and as lifesaving in
its own way.
PAUL HOLDENGRÄBER: Let’s listen to the poet.
DYLAN THOMAS audio:
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
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Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay, Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
PAUL HOLDENGRÄBER: Thank you very much.
(applause)
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PAUL HOLDENGRÄBER: Atul Gawande is pleased to take some good questions from
you.
ATUL GAWANDE: Only good ones.
PAUL HOLDENGRÄBER: We have mikes coming around dif you could just hold a
minute for the mike to come. There’s a question up here. Or a question there first.
Q: If you treat an illness, or when you go through a surgery, if you prolong a person’s life
by a year or five years or however long, you can quantify that and it’s a lot harder to
quantify, well, I made this person happy. What’s your opinion on how that makes it more
difficult to make that an objective of a surgeon or a doctor? I guess a follow-up to that is
do you think a surgeon or somebody who is trained to prolong a life is the best person to
have that conversation or should that be left to perhaps someone like a nurse practitioner
or someone in hospice? Would it be better off to have other people trained to do that kind
of work?
ATUL GAWANDE: So a couple of questions embedded in there. One is how do we
measure or know how we are doing better or not. It’s not by, you know, death averted or,
you know, longer life. And it’s been a complex question. One of the ways that people
measure is simply by how much suffering people experience. I think the concept of
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concordance is the one that seems like the idea that would be most important to me,
which is that we find that we are able to improve the match between what people want
when they, when they’re arriving at that moment in life, and what they actually
experience. How far apart is that gap and is that gap getting closer and closer together?
And so finding ways to measure the concordance of—between what people’s wishes and
goals are and what they actually experience I think would be the way to think about it.
Now, who is going to be the best at helping to understand what your wishes and goals
are, you know, that you would consider chocolate ice cream and watching television
sufficient for you or you need to be out in the world with more people for life to be more
important to you, and it’s going to be different from person to person. And, you know, on
the one hand I would say, well, yes, the primary care physician that has known you for
many years and gotten to know you and embedded that slowly into the conversations that
you’ve had over time so that they’ve been able to get a good understanding of you is
probably far better than the surgeon who you’re meeting for the first time in a crisis
where you’re trying to decide at this moment what do we do.
At the same time, even if that prior conversation that occurred, being able to come back
to it, remember, remind ourselves, have that conversation—I think almost all of us have
to be better skilled at being able to take care of it. I think that nurses, palliative care
specialists, and others who have really focused on these questions do become better
skilled than others. And their ability to teach people from that experience—that Mass
General Hospital study I told you about where the palliative care doctors achieved 25
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percent longer life and less suffering for the patients. What it meant to me was that there
were half a dozen specialists at Mass General who had become really good at having
these conversations for people and that great preparation could have really meaningful
consequences that were beneficial to people. But can we then send everybody to see that
half dozen people? No. Can we create lots and lots of specialists and outsource that
conversation to people? That’s a possible solution, but the idea that we just further
fragment care—the oncologist takes care of the cancer, the chemotherapy, and the
surgeon tries to do the cutting, and there’s someone else who does the conversation stuff.
That just seems to me symptomatic of the decline of the reductionism of medicine and
the ways in which we’re failing people, and so I think that those are skills where we will
turn and find that the nurse is more important in that phase of our life than the—than
necessarily the oncologist, but that they are equipped as a group to be genuinely helpful
to you on what you are needing most to meet your most important priorities and concerns
as you get sicker, as I get sicker, as we all do. I think that’s crucial.
Q: Thanks. This kind of ties in with some of this, but my grandson is twenty-one and he
came to visit me this past weekend, and all of a sudden out of the blue he said to me in
the morning on Saturday morning, he said, “Grandma, he said, we’re going to be going
soon to Afghanistan,” and he said, “a lot of people are talking about a lot of the boys
coming back with brain injuries and stuff,” and he said, “what I want to know is if that
happens to me”—he wants to come back and write, and he likes Hemingway a lot—he
said to me, he said, “So if I come back and I have a brain injury or something will you
take care of me?” and I said, “of course,” and I work at the Department of Health, and we
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use your bell curve essay, as a matter of fact, but do you have—I know it’s a hard
question. But I’ve been thinking about what else I might say. I felt reluctant to talk about
it in a way just yet, you know, with that he said that to me with his mom and dad, his
mother’s my daughter, but what kind of conversation might I want to have about this? I
mean, this is a tough issue for a lot of people. Thanks.
ATUL GAWANDE: What an amazing grandson.
Q: Why do you say that?
ATUL GAWANDE: First of all to want to go and has not overly romanticized the idea
of what going into battle in that environment would be. Second to be thoughtful about the
worse case of what could happen. Clearly it’s worried him. And that’s probably the most
interesting thing and maybe important thing about it. I think of that question I raised
earlier—what are his fears? And that might tell you more than anything. What is it that
are his fears and concerns about going and about what might happen to him? And that
might be revealing as well about what he’s really going for and what his priorities are.
PAUL HOLDENGRÄBER: I would suggest he read your piece, too.
Q: First of all, I completely believe in hospice care. My husband spent the last three
months of his life at home in hospice-supported care, and they were incredible. They
came in twice a week and helped in whatever way they could, but one thing that they
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didn’t address, that’s not part of the hospice system, that they were unwilling to address
is when a patient who has no hope of bettering their situation, who are on a downward
spiral of quality of life is accelerating the end of life, and I wondered what your opinion
was on addressing that in a—
ATUL GAWANDE: Euthanasia.
Q: Exactly. In a candid way. It was actually something that they would not even discuss,
and I wonder what your opinion was on that.
ATUL GAWANDE: I understand it. I come from a background that makes me highly
suspicious. And that background is that my work’s been in patient safety and improving
the quality of care and what strikes me over and over again is how often we get decisions
wrong. We have 40 percent of coronary artery disease patients who receive incomplete or
inappropriate care, 60 percent of stroke patients, pneumonia patients, asthma patients get
incomplete or inappropriate care, and making mistakes about who should be offed, who
should be put to sleep or not is a huge fear for me. We already make mistakes that cost
hundreds of thousands of lives and the danger in my mind is that if we can’t get those
basic things right on that end, what will we get wrong on this side?
There are patients who are suicidal or who want to die because we have not been able
to—we have not treated their pain properly. Or because they’re depressed and in need of
treatment for depression. One of Jack Kevorkian’s patients who he put to death for her
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breast cancer turned out to be successfully cured on autopsy. Our trust in the health
system is based around the idea that we are there to help people and that we believe that
these people to whom we’re given awesome powers. I’m allowed to put people to sleep
and cut them open with a knife, and you trust that I’m not there to do harm. I worry about
losing that trust. I don’t rule out the concept categorically. But the most critical thing to
me is that we think hard about mistakes. My opposition to the death penalty is heavily
around the question of whether we make mistakes. This is not a—
Sometimes it is unequivocal, and toward the end the suffering can be great. There is the
double effect of treating someone’s pain and that’s sometimes hastening death towards
the end. And I don’t hesitate with my patients who are in pain to give sufficient pain
medicine for them to be able to be free of pain even if that means they may not be able to
breathe or anything after that. But the concept of because of the pain that might come or
the situation that might come that I would extinguish their life—That troubles me mainly
because of the fallibility that I feel is inherent in all of us.
But it is a struggle, because there are people who genuinely suffer, and they are coming
to the end, and it’s not just pain that they’re suffering, it’s simply something that they
don’t want to go through. I talked to a patient recently who is going through a cancer that
is advancing. And he said, “I don’t want to go through this.” They’re getting sicker day
by day and you know what’s happening. Yes, we can do this for pain and that for
depression and so on, but he simply does not want to—the anxiety you described earlier,
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but it’s unbearable, and they just want to not have to bear it and I understand that, but I
fear the error.
Q: This might be a little bit of a stretch from this conversation. I’m almost eight months
pregnant myself. It’s my second child and I chose a home birth for my first child, and I’m
choosing the same, I’m making the same decision for this child, but with a lot of fear. I
think I was thinking during the course of your article but also listening to you tonight,
that we’ve done the same thing with birth, we’ve medicalized it, and for very good
reason, I mean, birth was very often the end of a woman’s life and the end of a child’s
life, and we’ve managed to really change those statistics. At the same time it’s taken
away something also very important—maybe something at the same level of kind of
taking away those meaningful moments or conversation by medicalizing it and we’ve
maybe overmedicalized it. Where you know the statistics are looking pretty bad in terms
of the amount of surgery, maybe unnecessary surgery.
ATUL GAWANDE: Thirty percent.
Q: In some hospitals. So the question is, there is also this fact that when something
wrong happens and you never going to know when that’s going to happen, it doesn’t only
happen to other people, it’s better to be in a hospital. The same way that you mention that
when you—you never know, is a hospice right, or would you be missing that one thing
that you could do that could still—I can see how people do want to keep pushing, the
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same way I’m hesitating and saying, well, should I not just be the safest as possible.
There’s always that trade-off.
ATUL GAWANDE: So you’re asking about what is the—how do we understand this
trade-off? One the one hand, I do work some—I’m in charge now for the World Health
Organization of a program for safer childbirth as well as safer surgery and in the lowincome parts of the world, where 99 percent of our avoidable deaths in childbirth occur
and the death rates for mothers and newborns are just horrendous. I mean some of the
places we work in, it’s just criminal how many mothers and newborns die. The major
push is get them out of a home into facility delivery and make sure the facility is safe
enough with basic infection measures and basic availability of blood transfusion and
other capabilities of being able to reverse a problem that’s been reversed here. It’s no
longer the number one killer of mothers, of women under forty-five and of children. But
we’ve also advanced to the point that we have developed systems around being able to be
at home safety, that we can make a distinction between people who really are at risk for
being at home safely for birth and those that can’t be in the hospital, that we can provide
sterile conditions and infection control and dealing with bleeding, availability of an
ambulance that can get you to a hospital.
There are anecdotes and stories of, you know, people who—where bad decisions were
made at home and a child lost on the way, and yet our general national statistics are that
home birth and a low-risk mother appears to be just as safe as delivering in the hospital
and valued very much by the people who have that experience, so I think with the right
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supervision and right decisions, it has become—it’s an interesting cycle. We’ve been able
to take it out of—we’re saving lives in other parts of the world by bringing people into
facilities and in our setting we want to you know remove that 31 percent c-section rate on
average in the United States and begin to transform it while still making it what it is
today where it is so rare, it is literally a few hundred women out of millions of births a
year who would ever die.
PAUL HOLDENGRÄBER: Let’s take one great last question.
Q: I have a comment and a question. You were talking about the importance of
conversation and a lot of the comments from the audience were about conversations. I
noticed that a lot of what you were talking about was the conversation at the end of life,
and I just recently finished my dissertation and I was looking at the fact that people might
be learning about their idea of death and their idea of the afterlife from the media,
specifically what they watch on television, and I did look at Web discussions surrounding
some of these television shows that deal with topics about death and the afterlife and
found that people, even those self-identifying as professionals—as doctors, attorneys,
engineers, well-educated people as well as religious people—were having serious
conversations in these Web discussions about what they thought would happen after
death, what happened to their loved ones after death. And a shameless plug, I thought it
would be important to have a website, wetalkaboutdeath.com, which I’m working on
creating, because people seem to want even a safe haven in these Web discussions so that
they could be having a discussion without rejecting or mocking or being mocked.
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And I wanted to ask you about your point of view about these discussions in the media,
what the media’s doing. I noticed the New Yorker magazine seems to have an article
about death or somebody’s experience with death quite frequently lately, and I recently
heard that the BBC is planning to air a show about an eighty-four-year-old man going
through a death experience, and there was discussion about whether that was in poor
taste, so I wanted to ask whether you think the media is the place where the conversation
should begin, and obviously your article may have been part of that.
ATUL GAWANDE: Thank you for the question. I mean, you know, the media is a
mirror of our obsessions and the ways we begin to look at things. I’m not convinced it
gets a lot farther ahead of where people are, but we’re seeing a change in the
conversation that occurs. Partly there’s a lot of misinformation, I’m not even sure we in
medicine are as clear about the statistics, so, for example, there was a study looking at
what the survival from patients getting CPR is on the television show ER while it aired,
and it was a something like 60 percent survival rate or a 70 percent survival rate, which is
nowhere near what the reality is, which is less than 5 percent for everybody on the whole
and then for people with terminal illness, a miniscule, vastly less than 1 percent, who
have any chance of being revived even temporarily and none having, you know, longterm survival from it. So media can be a source of misinformation, and that has to be
addressed.
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But then the other thing is it is a place where we’re starting to have—you see the effects
of conversation. I don’t know how many of you ever watch the show Breaking Bad, but
the lead character knowing he is going to die and the process by which he’s doing it
being the theme and plot of what’s going on, and the conversations are the most
fascinating part and the most dramatic and cool part of the television show, and so seeing
how art and sometimes well-done, sometimes not so well-done, experiences play out in
the media is a fascinating window on what we’re all doing, and I feel very lucky that I get
to throw my two cents into that along the way.
PAUL HOLDENGRÄBER: And we feel very lucky too. Atul Gawande, thank you very
much.
(applause)
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