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, desperately. “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 rounds, discussing Paul’s case outside the room, where his family and I joined them. Paul’s acute respiratory failure was likely rapid cancer 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, we all expressed our love and respect. Tears glistened in Paul’s eyes. He expressed gratitude to his parents. He asked us to ensure that his manuscript be published in some form. He told me a last time that he loved me. The attending physician stepped in with strengthening words: “Paul, after you die, your family will fall apart, but they’ll pull it back together because of the example of bravery you set.” Jeevan’s eyes were trained on Paul as Suman said, “Go in peace, my brother.” With my heart breaking, I climbed into the last bed we would share.
I thought of other beds we’d shared. Eight years prior, as medical students, we’d slept similarly ensconced in a twin bed next to my grandfather as he lay dying at home, having cut our honeymoon short to help with caregiving duties. We awakened every few hours to give him medications, my love for Paul deepening as I watched him lean in and listen closely to my grandfather’s whispered requests. We’d never have imagined this scene, Paul’s own deathbed, so near in our future. Twenty-two months ago, we’d cried in a bed on another floor of this same hospital as we learned of Paul’s cancer diagnosis. Eight months ago, we’d been together here in my hospital bed the day after Cady was born, both napping, the first good, long sleep I’d had since her birth, wrapped in each other’s arms. I thought of our cozy bed empty at home, remembered falling in love in New Haven twelve years earlier, surprised right away by how well our bodies and limbs fit together, and thought of how ever since, we’d both slept best when entwined. I hoped with all I had that he felt that same restful comfort now.
An hour later, the mask and monitors were off, and morphine was flowing through Paul’s IV. He was breathing steadily but shallowly, and he appeared comfortable. Nonetheless, I asked him whether he needed more morphine, and he nodded yes, his eyes closed. His mother sat close; his father’s hand rested atop his head. Finally, he slipped into unconsciousness.
For more than nine hours, Paul’s family—his parents, brothers, sister-in-law, daughter, and I—sat vigil as Paul, unconscious, now drew increasingly halting, infrequent breaths, his eyelids closed, his face unburdened. His long fingers rested softly in mine. Paul’s parents cradled Cady and then put her in the bed again to snuggle, nurse, nap. The room, saturated with love, mirrored the many holidays and weekends we had all spent together over the years. I stroked Paul’s hair, whispering, “You’re a brave Paladin”—my nickname for him—and singing quietly into his ear a favorite jingle we’d made up over the previous months, its core message being “Thank you for loving me.” A close cousin and uncle arrived, and then our pastor. The family shared loving anecdotes and inside jokes; then we all took turns weeping, studying Paul’s face and each other’s with concern, steeped in the preciousness and pain of this time, our last hours all together.
Warm rays of evening light began to slant through the northwest-facing window of the room as Paul’s breaths grew more quiet. Cady rubbed her eyes with chubby fists as her bedtime approached, and a family friend arrived to take her home. I held her cheek to Paul’s, tufts of their matching dark hair similarly askew, his face serene, hers quizzical but calm, his beloved baby never suspecting that this moment was a farewell. Softly I sang Cady’s bedtime song, to her, to both of them, and then released her.
As the room darkened into night, a low wall lamp glowing warmly, Paul’s breaths became faltering and irregular. His body continued to appear restful, his limbs relaxed. Just before nine o’clock, his lips apart and eyes closed, Paul inhaled and then released one last, deep, final breath.
—
When Breath Becomes Air is, in a sense, unfinished, derailed by Paul’s rapid decline, but that is an essential component of its truth, of the reality Paul faced. During the last year of his life, Paul wrote relentlessly, fueled by purpose, motivated by a ticking clock. He started with midnight bursts when he was still a neurosurgery chief resident, softly tapping away on his laptop as he lay next to me in bed; later he spent afternoons in his recliner, drafted paragraphs in his oncologist’s waiting room, took phone calls from his editor while chemotherapy dripped into his veins, carried his silver laptop everywhere he went. When his fingertips developed painful fissures because of his chemotherapy, we found seamless, silver-lined gloves that allowed use of a trackpad and keyboard. Strategies for retaining the mental focus needed to write, despite the punishing fatigue of progressive cancer, were the focus of his palliative-care appointments. He was determined to keep writing.