When Breath Becomes Air
By Paul Kalanithi
Paul Kalanithi was a
neurosurgeon and writer. He grew up in Kingman, Arizona, and graduated
from Stanford University with a BA and MA in English literature and a BA in
Human Biology. He earned an MPhil in history and philosophy of science
and medicine from University of Cambridge and graduated cum laude from the Yale
School of Medicine, where he was inducted into the Alpha Omega Alpha national
medical honor society. He returned to Stanford to complete his residency
training in neurological surgery and postdoctoral fellowship in nueroscience,
during which he received the American Academy of Neurological Surgery's highest
award for research. He died from lung cancer in March 2015 at age
36.
.....
A few years later, I hadn't thought
much more about a career but had nearly completed degrees in English literature
and human biology. I was driven less by achievement than by trying to
understand, in earnest: What makes human life meaningful? I still felt literature
provided the best account of the life of the mind, while neuroscience laid down
the most elegant rules of the brain.
Throughout college, my monastic,
scholarly study of human meaning would conflict with my urge to forge and
strengthen the human relationships that formed that meaning. If the
unexamined life was not worth living, was the unlived life worth
examining?
.....
Returning to the ward, I ran into
Melissa. "Hey, do you know how last night's twin babies are
doing?" I asked.
She darkened. Baby A died yesterday afternoon; Baby B managed to live not
quite 24 hours, then passed away this morning... What possible sense
could be made, what words were there for comfort?
"Was it the right choice to do an emergency C-section?" I asked.
"No question," she said. "It was the only shot they
had." "What happens if you don't?" "Probably,
they die. Abnormal fetal heart tracings show when the fetal blood turning
acidemic, the cord is compromised somehow."
"But how do you know when the tracing looks bad enough? Which is
worse, being born too early or waiting too long to deliver?"
"Judgment call."
What a call to make. In my life, had I ever made a decision harder than
choosing between a French dip and a Reuben? How could I ever learn to
make, and live with, such a judgment call? I still have a lot of
practical medicine to learn, but would knowledge alone be enough, with life and
death hanging in the balance? Surely intelligence wasn't enough; moral
clarity was needed as well. Somehow, I had to believe, I would gain not
only knowledge but wisdom, too.
While all doctors treat diseases, neurosurgeons work in the crucible of
identity: every operation on the brain is, by necessity, a manipulation of the
substance of ourselves, and every conversation with a patient undergoing brain
surgery cannot help but confront this fact. In addition, to the patient
and family, the brain surgery is usually the most dramatic event they have ever
faced and, as such, has the impact of any major life event. At those
critical junctures, the question is not simply whether to live or die but what
kind of life is worth living. Would you trade your ability to talk for a
few extra months of mute life? The expansion of your visual blind spot in
exchange for eliminating the small possibility of a fatal brain
hemorrhage? Your right hand's function to stop seizures? How much
neurologic suffering would you let your child endure before saying that death
is preferable? Because the brain mediates our experience of the world,
any neurological problem forces a patient and family, ideally with a doctor as
a guide, to answer this question: What makes life meaningful enough to go
on living?
I had started in this career, in
part, to pursue death: to grasp it, uncloak it, and see it eye-to-eye,
unblinking. Neurosurgery attracted me as much for its intertwining of
brain and consciousness as for its intertwining of life and death. I had
thought that a life spent in the space between the two would grant me not merely
a stage for compassionate action but an elevation of my own being: getting far
away from petty materialism, from self-importance trivia, getting right
there, to the heart of the matter, to truly life-and-death decisions and
struggles.
But in residency, something else was
gradually unfolding. In the midst of this endless barrage of head
injuries, I observed a lot of suffering; worse, I became inured to it.
Drowning, even in blood, one adapts, learns to float, to swim, even to enjoy
life...
One day, I heard that Laurie, a
friend from medical school, had been hit by a car and that a neurosurgeon had
performed an operation to try to save her. She'd coded, was revived, and
then died the following day... I didn't want to know more. I didn't
ask for details. I already had too many... I feared I was on the
way to becoming Tolstory's stereotype of a doctor, preoccupied with empty
formalism, focused on the rote treatment of disease -- and utterly missing the
larger human significance.
A mother came to me, newly diagnosed
with brain cancer. She was confused, scared, overcome by
uncertainty. I was exhausted, disconnected. I rushed through her
questions, assured her that surgery would be a success, and assured myself that
there wasn't enough time to answer her questions fairly. But why
didn't I make the time? I feared I was losing sight of the singular
importance of human relationships, not between patients and their families but
between doctor and patient. Technical excellence was not enough. As
a resident, my highest ideal was not saving lives -- everyone dies eventually
-- but guiding a patient or family to an understanding of illness or death.
With my renewed focus, informed
consent -- the ritual by which a patient signs a piece of paper, authorizing
surgery -- became not a juridical exercise in naming all the risks as quickly
as possible, but an opportunity to forge a covenant with a suffering
compatriot: Here we are together, and here are the ways through -- I promise
to guide you, as best as I can, to the other side.
.....
Removing the tumor was satisfying --
even though I knew that microscopic cancer cells had already spread throughout
that healthy-looking brain. The nearly inevitable recurrence was a
problem for another day. One spoonful at a time. Openness to human
relationality does not mean revealing grand truths from the apse; it means
meeting patients where they are, in the narthex or nave, and bringing them as
far as you can.
Driving home later that night, after
gently explaining to a mother that her newborn had been born without a brain
and would die shortly, I switched on the radio; NPR was reporting on the
continuing drought in California. Suddenly, tears were streaming down my
face. Being with patients in these moments certainly had its emotional
cost, but it also had its rewards. I don't think I ever spent a minute of
any day wondering why I did this work, or whether it was worth it. The
call to protect life -- and not merely life but another's identity -- was
obvious in its sacredness.
Before operating on a patient's
brain, I realized, I must first understand his mind: his identity, his values,
what makes his life worth living, and what devastation makes it reasonable to
let that life end. The cost of my dedication to succeed was high, and the
ineluctable failures brought me nearly unbearable guilt. Those burdens
are what make medicine holy and wholly impossible.
It felt to me as if the individual
strands of biology, mortality, life and death were finally beginning to weave
themselves into, if not a perfect moral system, a coherent worldview and a
sense of my place in it. Doctors in highly charged fields met patients at
inflected moments, the most authentic moments, where life and identity were under
threat; their duty included learning what made that particular patient's life
worth living, and planning to save those things if possible -- or to allow the
peace of death if not. Such power required deep responsibility, sharing
in guilt and recrimination.
I was at a conference in San Diego
when my phone rang. My co-resident, Victoria.
"Paul?" Something
was wrong, my stomach tightened. "What's up?" I said.
"It's Jeff. He killed himself." "What?"
"He, uh - he apparently had a difficult complication, and his patient
died. Last night he climbed onto the roof of a building and jumped
off..."
I searched for a question to bring
understanding. None was forthcoming. I could only imagine the
overwhelming guilt, like a tidal wave, that had lifted him up and off that
building.
I wished, desperately, that I
could've been walking with him out of the door of the hospital that
evening. I wished we could've commiserated as we used to. I wished
I could have told Jeff what I had come to understand about life, and our chosen
way of life, if only to hear his wise, clever counsel. Death comes for
all of us. For us, for our patients. Most lives are lived with
passivity toward death -- it's something that happens to you and those around
you. But Jeff and I had trained for years to actively engaged with death,
to grapple with it, and, in doing so, to confront the meaning of a life.
We had assumed an onerous yoke, that of mortal responsibility. Our
patients’ lives and identities may be in our hands, yet death always
wins. Even if you are perfect, the world isn't. The secret is to
know that the deck is stacked, that you will lose, that your hands or judgment
will slip, and yet still struggle to win for your patients. You can't
ever reach perfection, but you can believe in an asymptote toward which you are
ceaselessly striving.
.....
One chapter of my life seemed to
have ended; perhaps the whole book is closing. Instead of being the
pastoral, figure aiding a life transition, I found myself the sheep, lost and
confused. Severe illness wasn't life-altering, it was
life-shattering. It felt less like an epiphany -- a piercing burst of
light, illuminating What Really Matters -- and more like someone had just firebombed
the path forward. Now I would have to work around it.
My brother Jeevan had arrived at my
bedside. "You've accomplished so much," he said.
"You know that, don't you?"
I sighed. He meant well, but
the words rang hollow. My life had been building potential, potential
that would now go unrealized. I had planned to do so much, and I had come
so close. I was physically debilitated, my imagined future and my
personal identity collapsed, and I faced the same existential quandaries my
patients faced. The lung cancer diagnosis was confirmed. My
carefully planned and hard-won future no longer exist. Death, so familiar
to me in my work, was now paying a personal visit. Here we are, finally
face-to-face, and yet nothing about it seemed recognizable. Standing at
the crossroads where I should have been able to see and follow the footprints
of the countless patients I had treated over the years, I saw instead only a
blank, a harsh, vacant, gleaming white desert, as if a sandstorm had erased all
trace of familiarity.
Had the confirmation of my fears --
in the CT scan, in the lab results, both showing not merely cancer but a body
overwhelmed, nearing death -- released me from the duty to serve, from my duty
to patients, to neurosurgery, to pursuit of goodness? Yes, I thought, and
therein was the paradox: like a runner crossing the finish line only to
collapse, without that duty to care for the ill pushing me forward, I became
invalid.
During my residency, I had sat with
countless patients and families to discuss grim prognoses; it's one of the most
important jobs you have, as a physician. It's easier when the patient is
94, in the last stages of dementia, with a severe brain bleed. But for
someone like me -- a 36-year-old given a diagnosis of terminal cancer -- there
aren't really words.
The reason doctors don't give
patient specific prognoses is not merely because they cannot. What
patients seek is not scientific knowledge that doctors hide but existential
authenticity each person must find on her own. Getting too deeply into
statistics is like trying to quench a thirst with salty water. The angst
of facing mortality has no remedy in probability.
When I arrived home, I got a phone
call saying that I did, in fact, have a treatable mutation (EGFR). Chemo
was off, thankfully, and Tarceva, a little white pill, became my
treatment. I soon began to feel stronger. And even though I no
longer really knew what it was, I felt it: a drop of hope. The fog
surrounding my life rolled back another inch, and a sliver of blue sky peeked
through...
Like my own patients, I had to face
my mortality and try to understand what made my life worth living. Torn
between being a doctor and being a patient, delving into medical science and
turning back to literature for answers, I struggled, while facing my own death,
to rebuild my old life -- or perhaps find a new one.
.....
A local meeting of former Stanford
neurosurgery graduates was happening that weekend, and I looked forward to the
chance to reconnect with my former self. Yet being there heightened the
surreal contrast of what my life was now. I was surrounded by success and
possibility and ambition, by peers and seniors whose lives were running along a
trajectory that was no longer mine. I felt trapped inside a reversed
Christmas carol: Victoria was opening the happy present -- grants, job offers,
publications -- I should be sharing. My senior peers were living the
future that was no longer mine...
No one asked about my plans, which
was a relief, since I had none. While I could now walk without a cane, a
paralytic uncertainty loomed: Who would I be, going forward, and for how
long? Invalid, scientist, teacher? Bioethicist? Neurosurgeon
once again? Stay-at-home dad? Writer? Who could or should I
be? As a doctor, I had had some sense of what patients with life-changing
illness faced -- and it was exactly these moments I had wanted to explore with
them. Shouldn't terminal illness, then, be the perfect gift to that young
man who had wanted to understand death? What better way to understand it
than to live it? But I'd had no idea how hard it would be, how much
terrain I would have to explore, map, settle. I'd always imagined the
doctor's work as something like connecting two pieces of railroad track,
allowing a smooth journey for the patient. I hadn't expected the prospect
of facing my own mortality to be so disorienting, so dislocating.
And so it was literature that
brought me back to life during this time. The monolithic uncertainty of my
future was deadening; everywhere I turned, the shadow of death obscured the
meaning of any action. I remember the moment when my overwhelming unease
yielded, when that seemingly impassable sea of uncertainty parted. I woke
up in pain, facing another day -- no project beyond breakfast seemed
tenable. I can't go on, I thought, and immediately, the antiphon
responded, completing Samuel Beckett's seven words, words I had learned long
ago as an undergraduate: I'll go on. I got out of bed and took a
step forward, repeating the phrase over and over: "I can't go on.
I'll go on."
The tricky part of illness is that,
as you go through it, your values are constantly changing. You try to
figure out what matters to you, and then you keep figuring it out. It
felt like someone had taken away my credit card and I was having to learn how
to budget. You may decide you want to spend your time working as a
neurosurgeon, but two months later, you may feel differently. Two months
after that, you may want to learn to play the saxophone or devote yourself to
church. Death may be a one-time event, but living with terminal illness
is a process.
And now, finally, maybe I had
arrived at denial. Maybe total denial. Maybe, in the absence of any
certainty, we should just assume that we're going to live a long time.
Maybe that's the only way forward.
If no longer sought to fly the
highest trajectory of neurosurgeon and neuroscientist, what did I want?
To be a father?
To be a neurosurgeon?
To teach?
I didn't know. But if I didn't
know what I wanted, I had learned something, something not found in
Hippocrates, Maimonide, or Osler: the physician's duty is not to stave off
death or return patients to their old lives, but to take into our arms a patient
and family whose lives have disintegrated and work until they can stand back up
and face, and make sense of, their own existence.
.....
I hopped out of the CT scanner,
seven month since I had returned to surgery. This would be my last scan
before finishing residency, before becoming a father, before my future became
real.
"Wanna take a look, Doc?"
the tech said.
"Not right now," I
said. "I've got a lot of work to do today."
It was already 6pm. I had to
go to see patients, organize tomorrow's OR schedule, review films, dictate my
clinic notes, check on my post-ops, and so on. Around 8pm, I sat down in
the neurosurgery office, next to a radiology reviewing station. I turned
it on, looked at my patients' scans for the next day -- two simple spine cases
-- and, finally, typed in my own name. I zipped through the image as if
they were a kid's flip-book, comparing the new scan to the last.
Everything looked the same, the old tumors remained exactly the same... except,
wait.
I rolled back the images.
Looked again.
There it was. A new tumor,
large, filling my right middle lobe. It looked, oddly, like a full moon
having almost cleared the horizon... I was neither angry nor
scared. It simply was. It was the fact about the world, like the
distance between the sun to the earth. The treatments this time around
would be tougher to endure, the possibility of a long life more remote...
Everyone succumbs to finitude.
I suspect I am not the only one who reaches this pluperfect state. Most
ambitions are either achieved or abandoned; either way, they belong to the
past. The future, instead of the ladder toward the goals of life,
flattens out into a perpetual present. Money, status, all the vanities
hold so little interest: a chasing after wind, indeed.
Yet, one thing cannot be robbed of
her futurity: our daughter, Cady. I hope I'll live long enough that she
has some memory of me. Words have a longevity I do not. There is
perhaps only one thing to say to this infant, who is all future, overlapping
briefly with me, whose life, barring the improbable, is all but past.
That message is simple:
When you come to one of many moments in life
where you must give an account of yourself, provide a ledger of what you have
been, and done, and meant to the world, do not, I pray, discount that you
filled a dying man's days with sated joy, a joy unknown to me in all my prior
years, a joy does not hunger for more and more but rests, satisfied. In
this time, right now, that is an enormous thing.
