When Breath Becomes Air(19)

For amid that unique suffering invoked by severe brain damage, the suffering often felt more by families than by patients, it is not merely the physicians who do not see the full significance. The families who gather around their beloved—their beloved whose sheared heads contained battered brains—do not usually recognize the full significance, either. They see the past, the accumulation of memories, the freshly felt love, all represented by the body before them. I see the possible futures, the breathing machines connected through a surgical opening in the neck, the pasty liquid dripping in through a hole in the belly, the possible long, painful, and only partial recovery—or, sometimes more likely, no return at all of the person they remember. 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.



Had I been more religious in my youth, I might have become a pastor, for it was the pastoral role I’d sought.

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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.

By this point in my residency, I was more efficient and experienced. I could finally breathe a little, no longer trying to hang on for my own dear life. I was now accepting full responsibility for my patients’ well-being.

My thoughts turned to my father. As medical students, Lucy and I had attended his hospital rounds in Kingman, watching as he brought comfort and levity to his patients. To one woman, who was recovering from a cardiac procedure: “Are you hungry? What can I get you to eat?”



“Anything,” she said. “I’m starving.”

“Well, how about lobster and steak?” He picked up the phone and called the nursing station. “My patient needs lobster and steak—right away!” Turning back to her, he said, with a smile: “It’s on the way, but it may look more like a turkey sandwich.”

The easy human connections he formed, the trust he instilled in his patients, were an inspiration to me.

A thirty-five-year-old sat in her ICU bed, a sheen of terror on her face. She had been shopping for her sister’s birthday when she’d had a seizure. A scan showed that a benign brain tumor was pressing on her right frontal lobe. In terms of operative risk, it was the best kind of tumor to have, and the best place to have it; surgery would almost certainly eliminate her seizures. The alternative was a lifetime on toxic antiseizure medications. But I could see that the idea of brain surgery terrified her, more than most. She was lonesome and in a strange place, having been swept out of the familiar hubbub of a shopping mall and into the alien beeps and alarms and antiseptic smells of an ICU. She would likely refuse surgery if I launched into a detached spiel detailing all the risks and possible complications. I could do so, document her refusal in the chart, consider my duty discharged, and move on to the next task. Instead, with her permission, I gathered her family with her, and together we calmly talked through the options. As we talked, I could see the enormousness of the choice she faced dwindle into a difficult but understandable decision. I had met her in a space where she was a person, instead of a problem to be solved. She chose surgery. The operation went smoothly. She went home two days later, and never seized again.



Any major illness transforms a patient’s—really, an entire family’s—life. But 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? The root of disaster means a star coming apart, and no image expresses better the look in a patient’s eyes when hearing a neurosurgeon’s diagnosis. Sometimes the news so shocks the mind that the brain suffers an electrical short. 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.



Cancer of the brain comes in two varieties: primary cancers, which are born in the brain, and metastases, which emigrate from somewhere else in the body, most commonly from the lungs. Surgery does not cure the disease, but it does prolong life; for most people, cancer in the brain suggests death within a year, maybe two. Mrs. Lee was in her late fifties, with pale green eyes, and had transferred to my service two days earlier from a hospital near her home, a hundred miles away. Her husband, his plaid shirt tucked into crisp jeans, stood by her bedside, fidgeting with his wedding ring. I introduced myself and sat down, and she told me her story: For the past few days, she had felt a tingling in her right hand, and then she’d begun to lose control of it, until she could no longer button her blouse. She’d gone to her local ER, fearing she was having a stroke. An MRI was obtained there, and she was sent here.