When I think of the last night of my brother Brian's life, what haunts me are his eyes. Wide open, terrified. Two nurses, my father, and I took turns at his bedside trying to soothe him. “You can rest now, Brian. There's nothing to be afraid of.” For a moment, his eyes would close. He'd start to drift off to sleep. Then the thrashing would begin again. His eyes would fly open and search, as if he were falling through darkness.
This was not the first time I'd stood at a sibling's deathbed. In 2006, my 38-year-old brother Andrew died of small bowel cancer. A few weeks before his death, he'd entered a hospice facility. There, the staff offered counseling, back rubs, his favorite foods. His nurses ensured that his pain was controlled and his breathing unlabored. One morning, he woke and looked at me. “There's no fear in my eyes,” he said. They were the last words he ever spoke.
Seven years later, my sister Angelica died of bile duct cancer that had spread to her liver. She had opted for home hospice care. One day she fell asleep and didn't wake. Later her husband would tell us that her death had been so peaceful, neither he nor the hospice nurse—conversing softly beside her—had noticed the precise moment she'd slipped away.
This time was different. Brian was not in a hospice facility or at home. He was on the oncology unit of a general hospital, his bloodstream saturated with an immunotherapy drug infused that afternoon with the goal of prolonging his life.
He'd been diagnosed just 11 weeks earlier: adenocarcinoma of unknown primary. In our first postdiagnosis phone call, he'd assured me that his prognosis was excellent. “This isn't like Andrew and Angelica,” he said. His oncologist was confident that the new drug treatments might cure him, or at least extend his life long enough for him to attend his daughter's high school graduation. Felicity—his only child—had not yet been born.
Still, scans showed that the cancer was all over his body—in his lungs, bones, adrenal glands, tonsils, even the muscle of his left thigh. So what was behind the upbeat prognosis? I asked Brian and his wife, Christy, about the findings of his pathology report. They hadn't seen it. And who could blame them for not delving into the medical details? Christy was six months pregnant, and Brian's disease and initial treatments had left him so debilitated he couldn't get out of bed.
A few weeks later, persistently low blood platelets made further chemo impossible. Brian's oncologist recommended an immunotherapy drug. Shortly after the first infusion, Brian went into respiratory failure and was rushed to the ICU. He survived. A week later, there was a second respiratory crisis. Again, he survived. Gradually, his condition seemed to improve. The fluid in his lungs abated. He was able to maintain normal blood oxygen levels. Brian's oncologist held a family meeting in the hospital room. He advised a second round of immunotherapy.
Christy asked, “What's the best response we can hope for with this drug?” The oncologist admitted there might be no response at all. “But it can sometimes prolong life for eight or nine months.”
I looked at Brian. Until this moment, I knew, he had not allowed himself to consider the possibility that he would not get through this—would not, in fact, attend his daughter's high school graduation. His face was still.
The oncologist waited. He presented no other options. After a pause, Brian agreed to the second infusion.
“You're getting stronger, Brian.” The oncologist's voice was hearty, encouraging. “Time to go back on the offense.”
The immunotherapy was infused the next day. Within hours, Brian was—in the words of his medical record—“massively decompensating.” The next morning, he died.
In the weeks that followed, I kept asking myself what could have been different. The answer came in the memories of my siblings' deaths in hospice. Why had hospice never been offered to Brian?
The American Medical Association's Code of Medical Ethics requires that patients be fully informed of “the burdens, risks, and expected benefits of all options, including forgoing treatment.” But in our meeting, Brian's oncologist had not discussed the risks of more treatment or the option of hospice. Did he regret his decision? Perhaps. As we spoke in the hallway outside Brian's room that final night, he seemed troubled, even sad.
Of course we'll never know whether hospice care—rather than further drug treatment—might have enabled Brian to see and hold his daughter, born 59 days after he died. But it might have given him time to write her a letter, or record himself singing her a lullaby. At the very least, it might have allowed him to die, as our siblings did, peacefully, no fear in his eyes.