My latest read is a book written by a neurosurgeon from Stanford University, Paul Kalanithi's "When Breath Becomes Air".
I like to read books written by doctors for several reasons:
(1) The way they talk about life and mortality is very profound.
(2) Because they are very intellectual and scientific, there's no baseless drama. If there's ever drama, there's always an authentic reason for it.
(3) No matter how scientific their brains are wired, almost always, there's a point in their lives when they begin to acknowledge the existence of some kind of spirituality.
(4) I learn a lot - not just about medicine but about life and dealth.
One of my favorite books is "Being Mortal" by Atul Gawande who's also surgeon. After reading, Kalanithi's "When Breath Becomes Air", I also have to add it to my favorite reads. Kalanithi's words made think, laugh, learn, reflect and yes, cry. You'll know later why. :(
Sharing with you my top learnings from Kalanithi's When Breath Becomes Air (in random order):
1. The difference between tragedy and triumph in neurosurgery is defined by one or two millimeters.
As Kalanithi explained, technical excellence in neurosurgery is a moral requirement. Good intentions are not enough, he said, not when so much depended on one's skills.
Cut 1 to 2 millimeters deeper and the patient may be completely paralyzed. Cut 1 to 2 millimeters deeper, the patient may not be able to speak or write. Cut 1 to 2 millimeters deeper, the patient may be able to speak but in a stream of unconnected words and phrases that don't make sense. (Thought bubble: How could even a person want to be a neuro-surgeon?! )
There was one patient whom Kalanithi met, who after his brain tumor was removed, could only speak in streams of numbers. “Fourteen one two eight,” the patient kept on repeatedly saying but no one could understand him. The patient died a few months later without anyone knowing what he meant by "Fourteen one two eight".
When the gift of language is taken away from a person, the patient becomes an isolate, something central to her humanity stolen forever. Kalanithi shares that the destruction of the sensitive areas of the brain like those that cover the language areas often restrains the surgeon’s impulse to save a life for what kind of life exists without language? he asked.
To make sure that the right spot of the brain is touched, surgeries are performed with the patient awake and talking so the patient could be asked to perform various verbal tasks. There was a time when Kalanithi operated on someone with Parkinson's disease. The target was the subthalamic nucleus, a tiny almond-shaped structure deep in the brain that is responsible for movement, cognition and emotion. Kalanithi placed an electrode 9 cms deep in a patient’s brain and it stopped the Parkinson's tremors on the left hand but then the patient said “I feel…overwhelmingly sad.” They put off the current and turned it on again but the patient still said that if feels dark and sad. They pulled the electrode out and reinserted it, this time 2 millimeters to the right. The tremor went away and the patient felt normal (no longer sad).
But there's one funny anecdote. There was this patient who had a tumor located in the language areas of the brain. The hospital's entire tumor board deemed the operation to be too dangerous but the surgeon still opted to proceed. Kalanithi felt that it was their responsibility to say no to the patient. But when he met with the patient, the patient just told Kalanithi “I want this thing out of my f*cking brain. Got it?” pointing to his head. There was no way the patient could be talked out of the operation.
So what happened during the operation? Instead of the usual alphabet recital or counting exercise, throughout the surgery, the patient blurted out a litany of profanity to the doctors! “Is that f*cking thing out of my head yet? Why are you slowing down? Go faster! I want it out. I can stay here all f*cking day, I don’t care, just get it out!”
The patient’s monologue kept on even after Kalanithi has successfully removed the tumor - “Why’d you stop? You some kinda as*hole? I told you I want the f*cking thing gone!”
Kalanithi at that point told the patient that the tumor was already gone. But all throughout the surgery, the patient never encountered any speech difficulty considering the tumor was big and it was in the language areas! Kalanithi's thoughts were - How was he still talking? Given the size and location of the tumor, it seemed impossible. Profanity supposedly ran on a slightly different circuit from the rest of language. Perhaps the tumor had caused his brain to rewire somehow…
Haha....
2. The physician’s duty is not to stave off death or return patients to their old lives, but to guide the patient and family, whose lives have disintegrated, and work with them until they can stand back up and face, and make sense of, their own existence.
Before operating on a patient’s brain, Kalanithi first understood his patient's mind - his identity, his values, what makes his life worth living, and what devastation makes it reasonable to let that life end.
Kalinithi also shared that his highest ideal was not to save lives because everyone dies eventually—but to guide a patient or family to an understanding of death or illness.
He said that when a patient comes in with a fatal head bleed, that first conversation with a neurosurgeon may forever color how the family remembers the death, from a peaceful letting go (“Maybe it was his time”) to an open sore of regret (“Those doctors didn’t listen! They didn’t even try to save him!”). When there’s no place for the scalpel, words are the surgeon’s only tool.
For example, if a patient suffered brain damage, families usually see only the past like their memories with the person, while Kalanithi see the possible futures - the breathing machine, the possible long, painful, and partial recovery or, sometimes no recovery at all. Kalanithi tried to help families understand that the person they knew—the full, vital independent human—now lived only in the past and that he needed the family's input to understand what sort of future the patient would want.
Don't you wish all doctors were like Kalanithi?!:)
3. Brain diseases are probably the worst.
Any major illness transforms a patient’s life and his/her entire family’s life. But Kalanithi pointed out that brain diseases have the additional strangeness of the esoteric. A son’s death already defies the parents’ ordered universe; how much more incomprehensible is it when the patient is brain-dead, his body warm, his heart still beating? he asked.
4. It's important for doctors to be accurate but they must always leave some room of hope.
Rather than saying, “Median survival is eleven months” or “You have a ninety-five percent chance of being dead in two years,” Kalanithi would say, “Most patients live many months to a couple of years.” This was to him a more honest description.
Kalanithi explained that you can’t exactly tell an individual patient where she sits on the curve: Will she die in 6 months or 60? Kalanithi came to believe that it is irresponsible to be more precise than you can be accurate. He said - "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?"
5. Knowing that even if you're dying, until you actually die, you are still living.
Here's one of his conversations with his wife:
“What are you most afraid or sad about?” she asked me one night as we were lying in bed.
“Leaving you,” I told her. I knew a child would bring joy to the whole family, and I couldn’t bear to picture Lucy husbandless and childless after I died, but I was adamant that the decision ultimately be hers: she would likely have to raise the child on her own, after all, and to care for both of us as my illness progressed.
“Will having a newborn distract from the time we have together?” she asked.
“Don’t you think saying goodbye to your child will make your death more painful?”
“Wouldn’t it be great if it did?” I said.
Lucy and I both felt that life wasn’t about avoiding suffering.
They both decided to have a child. They would carry on living, instead of dying.
They both decided to have a child. They would carry on living, instead of dying.
6. Until you've gone through something yourself, you don't really know.
Kalanithi shared:
As a doctor, you have a sense of what it’s like to be sick, but until you’ve gone through it yourself, you don’t really know. It’s like falling in love or having a kid. You don’t appreciate the mounds of paperwork that come along with it, or the little things. When you get an IV placed, for example, you can actually taste the salt when they start infusing it. They tell me that this happens to everybody, but even after eleven years in medicine, I had never known.
7. 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.
7. 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.
Kalanithi shared that based on statistics, he might live another twelve months, or another 120 and he thought that having terminal illness would be life-clarifying. If he no longer sought to fly on the highest trajectory of neurosurgeon and neuroscientist, what did he want? To be a father? To be a neurosurgeon? To teach? However, not knowing the exact months or years made it difficult for him. If he knew he had 3 months, he'd spend time with his family. If one year, he’d write a book. If 10 years, he’d get back to treating diseases. But living one day at a time didn’t help. He didn't know what to do with a day.
He concluded that 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, he said.
But he also added that as you go through your illnesss, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it out.... 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 the church. Death may be a one-time event, but living with terminal illness is a process, he shared.
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| Kalanithi and his baby. Source |
He had multiple organ failure and the only way he could live was to be on life support but it wasn't the life that he wanted (though his family pleaded with him). Overnight, he agreed to be on life support but the next day, he said he was ready to go. They put him on morphine and removed his life support.
His wife wrote the epilogue on his book and here are my favorite excerpts:
Paul confronted death—examined it, wrestled with it, accepted it—as a physician and a patient. He wanted to help people understand death and face their mortality. Dying in one’s fourth decade is unusual now, but dying is not.
Relying on his own strength and the support of his family and community, Paul faced each stage of his illness with grace—not with bravado or a misguided faith that he would “overcome” or “beat” cancer but with an authenticity that allowed him to grieve the loss of the future he had planned and forge a new one.
He cried on the day he was diagnosed. He cried while looking at a drawing we kept on the bathroom mirror that said, “I want to spend all the rest of my days here with you.” He cried on his last day in the operating room. He let himself be open and vulnerable, let himself be comforted. Even while terminally ill, Paul was fully alive; despite physical collapse, he remained vigorous, open, full of hope not for an unlikely cure but for days that were full of purpose and meaning.
What happened to Paul was tragic, but he was not a tragedy.
What happened to Paul was tragic, but he was not a tragedy.
