When Breath Becomes Air: A Doctor’s View on What It Means to Be Human

Summary: Paul Kalinithi wanted to understand what it means to be human. As a neurosurgeon with a background in literature, he had a unique perspective. Additionally, he was dying from cancer and finishing up his residency at exactly the same time, giving him the perspective of both doctor and patient.⁽¹⁾Being a doctor and a patient are very different. From Page 140. In fourteenth-century philosophy, the word patient simply meant “the object of an action,” and I felt like one. As a doctor, I was an agent, a cause; as a patient, I was merely something to which things happened.

I MET a Traveller from an antique land,
Who said, Two vast and trunkless legs of stone
Stand in the desert. Near them, on the sand,
Half sunk, a shattered visage lies, whose frown,
And wrinkled lip, and sneer of cold command,
Tell that its sculptor well those passions read,
Which yet survive, stamped on these lifeless things,
The hand that mocked them and the heart that fed,
And on the pedestal these words appear:
“My name is OZYMANDIAS, King of Kings.”
Look on my works ye Mighty, and despair!
Nothing beside remains. Round the decay
Of that Colossal Wreck, boundless and bare,
The lone and level sands stretch far away.

— Percy Shelley Ozymandias⁽²⁾Kalinithi ended this video reciting the poem.

Dr. Paul Kalinithi has always been interested in the question “What is life?” It’s a more basic question than “What’s the meaning of life” or “What does it mean to live a good life?” It’s the basics of what it means to be human.

Kalinithi approached this from two perspectives. Growing up, he started life as an English major at Stanford. Through literature he studied the noblest traits of humanity—relationships, beauty, and friendships. But as he got older, he realized that all of these things emerge from basic human biological processes in the brain.

When Breath Becomes Air is Kalinithi’s abbreviated study of these questions before. He has planned to be a Neurosurgeon for 20 years and then spend 20 years as a writer. Tragically, His study of life was cut short by lung cancer at 36, just after he finished his neurosurgery residency.

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 as far away from petty materialism, from self-important trivia, getting right there, to the heart of the matter, to truly life-and-death decisions and struggles…surely a kind of transcendence would be found there?

Kalanithi, Paul. When Breath Becomes Air (p. 81). Random House Publishing Group. Kindle Edition.

When examining what it means to be human, he talks about how a doctor gets to see the essential question of life and death, “What makes life worth living?”

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—or your mother’s—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 neurosurgical 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?

Kalanithi, Paul. When Breath Becomes Air (p. 71). Random House Publishing Group. Kindle Edition.

Being a doctor isn’t just about providing humanity to scientific diseases but it also provides a scientific basis for the drama of life. When people encounter awful news at a hospital, we think of them being shocked or rendered speechless. But in their brains, they’re suffering an electric short, which presents as “psychogenic” syndrome. Patients receiving horrible news can suffer seizures or fall into a coma.⁽³⁾From Page 90. This phenomenon is known as a “psychogenic” syndrome, a severe version of the swoon some experience after hearing bad news. When my mother, alone at college, heard that her father, who had championed her right to an education in rural 1960s India, had finally died after a long hospitalization, she had a psychogenic seizure—which continued until she returned home to attend the funeral. One of my patients, upon being diagnosed with brain cancer, fell suddenly into a coma. I ordered a battery of labs, scans, and EEGs, searching for a cause, without result. The definitive test was the simplest: I raised the patient’s arm above his face and let go. A patient in a psychogenic coma retains just enough volition to avoid hitting himself. The treatment consists in speaking reassuringly, until your words connect and the patient awakens.

This dichotomy of science and humanity is most clear in medical school. Medical school students struggle to learn about medicine by cutting open cadavers and dissecting specific diseases. At the same time, in order to be a great doctor, the students need to respect the humanity of these dead bodies.

Anatomy professors are perhaps the extreme end of this relationship, yet their kinship to the cadavers remains. Early on, when I made a long, quick cut through my donor’s diaphragm in order to ease finding the splenic artery, our proctor was both livid and horrified. Not because I had destroyed an important structure or misunderstood a key concept or ruined a future dissection but because I had seemed so cavalier about it. The look on his face, his inability to vocalize his sadness, taught me more about medicine than any lecture I would ever attend. When I explained that another anatomy professor had told me to make the cut, our proctor’s sadness turned to rage, and suddenly red-faced professors were being dragged into the hallway.

Kalanithi, Paul. When Breath Becomes Air (p. 49). Random House Publishing Group. Kindle Edition.

To be a great doctor, you need to be a great human, combining all of the pieces of science and humanity together. It’s not about showing statistics about average lengths of life, it’s about working with patients so that that can live the best lives possible, given all the circumstances:

First, detailed statistics are for research halls, not hospital rooms. The standard statistic, the Kaplan-Meier curve, measures the number of patients surviving over time. It is the metric by which we gauge progress, by which we understand the ferocity of a disease. For glioblastoma, the curve drops sharply until only about 5 percent of patients are alive at two years. Second, it is important to be accurate, but you must always leave some room for hope. Rather than saying, “Median survival is eleven months” or “You have a ninety-five percent chance of being dead in two years,” I’d say, “Most patients live many months to a couple of years.” This was, to me, a more honest description. The problem is that you can’t tell an individual patient where she sits on the curve: Will she die in six months or sixty? I came to believe that it is irresponsible to be more precise than you can be accurate. Those apocryphal doctors who gave specific numbers (“The doctor told me I had six months to live”): Who were they, I wondered, and who taught them statistics?

In these moments, I acted not, as I most often did, as death’s enemy, but as its ambassador. I had to help those families understand that the person they knew—the full, vital independent human—now lived only in the past and that I needed their input to understand what sort of future he or she would want: an easy death or to be strung between bags of fluids going in, others coming out, to persist despite being unable to struggle.

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, like the voiceover in an ad for a new pharmaceutical, 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.

The word hope first appeared in English about a thousand years ago, denoting some combination of confidence and desire. But what I desired—life—was not what I was confident about—death. When I talked about hope, then, did I really mean “Leave some room for unfounded desire?” No. Medical statistics not only describe numbers such as mean survival, they measure our confidence in our numbers, with tools like confidence levels, confidence intervals, and confidence bounds. So did I mean “Leave some room for a statistically improbable but still plausible outcome—a survival just above the measured 95 percent confidence interval?” Is that what hope was? Could we divide the curve into existential sections, from “defeated” to “pessimistic” to “realistic” to “hopeful” to “delusional”? Weren’t the numbers just the numbers? Had we all just given in to the “hope” that every patient was above average? It occurred to me that my relationship with statistics changed as soon as I became one. 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 ninety-four, in the last stages of dementia, with a severe brain bleed. But for someone like me—a thirty-six-year-old given a diagnosis of terminal cancer—there aren’t really words. The reason doctors don’t give patients specific prognoses is not merely because they cannot. Certainly, if a patient’s expectations are way out of the bounds of probability—someone expecting to live to 130, say, or someone thinking his benign skin spots are signs of imminent death—doctors are entrusted to bring that person’s expectations into the realm of reasonable possibility. 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.

This is from When Breath Becomes Air and it’s also a key part of Kalanithi’s Op-Ed How Long Have I Got Left?

So what’s a good death? Take the case of a seventy-year-old I know named Rebecca⁽⁴⁾The name and details of the story have been changed. Rebecca’s son and daughter-in-law were both artists. They love their art and love doing it. They opened up an art store which didn’t do particularly well financially but they enjoyed it before closing it down. Rebecca realized that they were never going to make enormous amounts of money so she wanted to make sure they were set up in case anything happened to her. She bought a house I’ve had room for her son and his family. She had everything set up. I thought it was odd for someone in perfectly good health to be planning for the distant future.

A couple of months after everyone moved in, Rebecca started having stomach pains and found out she had an extremely aggressive pancreatic cancer and died shortly afterward. I remember hearing about this and thinking about how even though it’s horrible that her life was taken too soon, she was able to get on the most important thing in her life which was to take care of her family. I realized that while we can’t avoid death we can still focus on what’s most important.

Kalanithi found his own meaning to the question of what it means to be human. When a patient is dying of terminal cancer, they need to determine what’s most important to them and how they want to spend their dying days. He prioritized retaining the mental focus needed to write and worked with his doctors to maintain this ability. ⁽⁵⁾From Page 108. But the most sacrosanct regions of the cortex are those that control language. Usually located on the left side, they are called Wernicke’s and Broca’s areas; one is for understanding language and the other for producing it. Damage to Broca’s area results in an inability to speak or write, though the patient can easily understand language. Damage to Wernicke’s area results in an inability to understand language; though the patient can still speak, the language she produces is a stream of unconnected words, phrases, and images, a grammar without semantics. If both areas are damaged, the patient becomes an isolate, something central to her humanity stolen forever. After someone suffers a head trauma or a stroke, the destruction of these areas often restrains the surgeon’s impulse to save a life: What kind of life exists without language?

After someone suffers a head trauma or a stroke, the destruction of these areas often restrains the surgeon’s impulse to save a life: What kind of life exists without language? As he said to his best friend when he learned about his cancer, “The good news is I’ve already outlived two Brontës, Keats, and Stephen Crane. The bad news is that I haven’t written anything.”⁽⁶⁾It reminds me of Tom Leher’s quip “It’s a sobering thought, for example, that, when Mozart was my age, he had been dead for two years.” Mozart died at 35. Kalanithi died at 37.⁽⁷⁾I wonder if this book is really written for us. I’m reminded about Randy Pausch’s Last Lecture: Achieving Your Childhood Dreams. He ends the talk with, “So today’s talk was about my childhood dreams, enabling the dreams of others, and some lessons learned. But did you figure out the head fake? It’s not about how to achieve your dreams. It’s about how to lead your life. If you lead your life the right way, karma will take care of itself. The dreams will come to you. Have you figured out the second head fake? The talk’s not for you, it’s for my kids. Thank you all, good night.”