The following is an excerpt from the epilogue written by Lucy Kalanithi to the recently published book When Breath Becomes Air written by her husband Paul Kalanithi, who died in March 2015 after a battle with stage IV lung cancer. It’s not merely a chronicle of how Paul reacted to and dealt with his cancer as it progressed and how that affected his marriage or future career plans. He confronts the diagnosis and delves into what squarely facing death meant for finding meaning in life and suffering. As heartbreaking as it was to read about what coming to terms with dying in the fourth decade of life meant for all the future hopes and aspirations, it was also illuminating and sobering. I cannot recommend this book highly enough.
Early Sunday morning, I stroked Paul’s forehead and found scorching with fever, 104 degrees, though he was relatively comfortable and free of other new symptoms. We made it in and out of the emergency room within a few hours, Paul’s father and Suman with us, returning home to the rest of the family after starting antibiotics in case of pneumonia (Paul’s chest X-ray was dense with tutors, which could obscure an infection). But was this, instead, the cancer progressing rapidly? Paul napped comfortably in the afternoon, but he was gravely ill. I started to cry as I watched him sleep, then crept out to our living room, where his father’s tears joined mine. I already missed him.
Sunday evening, Paul’s condition worsened abruptly. He sat on the edge of our bed, struggling to breathe — a startling change. I called an ambulance. When we re-entered the emergency room, Paul on a gurney this time, his parents close behind us, he turned toward me and whispered, “This might be how it ends.”
“I’m here with you,” I said
The hospital staff greeted Paul warmly, as always. But they moved quickly once they saw his condition. After initial testing, they placed a mask over his nose and mouth to help his breathing via BiPAP, a breathing support system that supplied a strong mechanized flow of air each time he inhaled, doing much of the work of breathing for him. Though it helps with respiratory mechanics, BiPAP can be hard work for a patient — noisy and forceful, blowing one’s lips with each breath like those of a dog with its head out a car window. I stood close, leaning over the gurney, my hand in Paul’s as the steady whoosh, whoosh of the of the machine began.
Paul’s blood carbon dioxide level was critically high, indicating that the work of breathing was overwhelming him. Blood tests suggested that some of the excess carbon dioxide had been accumulating over days to weeks, as his lung disease and debility had advanced. Because his brain had slowly become acclimated to higher-than-normal levels of carbon dioxide, he remained lucid. He observed. He understood, as a physician, the ominous test results. I understood them, too, walking behind him as he was wheeled to an intensive-care room, one where so many of his own patients had struggled before or after neurosurgery, their families assembled in vinyl chairs by their bedsides. “Will I need to be intubated?” he asked me between BiPAP breats when we arrived. “Should I be intubated?”
Through the night, Paul discussed that question in a series of conversations with his physicians, his family, and then just me. Around midnight, the critical-care attending, a longtime mentor to Paul, came in to discuss treatment options with the family. BiPAP was a temporary solution, he said. The only remaining intervention would be for Paul to be intubated — put on a ventilator. Was that what he wanted?
The key question quickly came into view: Could the sudden respiratory failure be reversed?
Of concern was whether Paul would remain too ill to ever come off the ventilator — would he be lost to delirium and then organ failure, first mind and then body slipping away? We’d witnessed this agonizing scenario as physicians. Paul explored the alternative: in lieu of intubation, he could choose “comfort care,” though death would come more surely and swiftly. “Even if I make it through this,” he said, thinking of the cancer in his brain, “I’m not sure I see a future that includes meaningful time.” His mother chimed in, desparately. “No decisions tonight, Pubby,” she said. “Let’s all get some rest.” After ensuring his “do not resuscitate” status, Paul agreed. Sympathetic nurses brought him extra blankets. I switched off the fluorescent lights.
Paul managed to doze until sunrise, his father sitting vigil while I napped briefly in an adjacent room, hoping to preserve my mental strength, knowing that the following day might be the hardest of my life. I crept back to Paul’s room at six A.M., the lights still low, the intensive-care monitors chiming intermittently. Paul opened his eyes. We talked again about “comfort care” — avoiding aggressive attempts to forestall his decline — and he wondered aloud whether he could go home. He was so ill that I worried he might suffer and die on the way. However, I said I would do everything possible to take him home if that was most important to him, nodding that yes, comfort care might be the direction we were headed. Or was there some way to re-create home here? Between BiPAP puffs, he answered: “Cady.”
Cady arrived in short order — our friend Victoria had retrieved her from home — and began her own unwitting, cheerful vigil, happily nestled in the crook of Paul’s right arm, tugging at her tiny socks, batting at his hospital blankets, smiling and cooing, unbothered by the BiPAP machine as it continued to blow, keeping Paul alive.
The medical team came by on round, discussing Paul’s case outside the room, where his family and I joined them. Paul’s acute respiratory failure was likely rapid cancer was progressing. His carbon dioxide level was rising still — a hardening indication for intubation. The family was torn: Paul’s oncologist had phoned in, hopeful that the acute problem could be ameliorated, but the physicians present were less optimistic. I entreated them to weigh in with as much conviction as possible on the chance of reversing his abrupt decline.
“He doesn’t want a Hail Mary,” I said. “If he doesn’t have a chance of meaningful time, he wants to take the mask off and hold Cady,”
I returned to Paul’s bedside. He looked at me, his dark eyes alert above the nose bridge of the BiPAP mask, and said clearly, his voice soft but unwavering, “I’m ready.”
Ready, he meant, to remove the breathing support, to start morphine, to die.
The family gathered together. During the precious minutes after Paul’s decision…