Being Mortal:Medicine and What Matters in the End(85)

By: Atul Gawande

That hospice could make it possible for her to teach again was more than I’d ever imagined, certainly more than she’d imagined. But when her hospice nurse, Deborah, arrived, they began talking about what Peg cared most about in her life, what having the best day possible would really mean to her. Then they worked together to make it happen.

At first, her goal was just managing her daily difficulties. The hospice team set up a hospital bed on the first floor so she wouldn’t have to navigate the stairs. They put a portable commode at the bedside. They organized help for bathing and getting dressed. They gave her morphine, gabapentin, and oxycodone to control her pain, and methylphenidate proved helpful for combating the stupor they induced.

Her anxieties plummeted as the challenges came under control. She raised her sights. “She was focused on the main chance,” Martin later said. “She came to a clear view of how she wanted to live the rest of her days. She was going to be home, and she was going to teach.”

It took planning and great expertise to make each lesson possible. Deborah helped her learn how to calibrate her medications. “Before she would teach, she would take some additional morphine. The trick was to give her enough to be comfortable to teach and not so much that she would be groggy,” Martin recalled.

Nonetheless, he said, “She was more alive running up to a lesson and for the days after.” She’d had no children; her students filled that place for her. And she still had some things she wanted them to know before she went. “It was important to her to be able to say her good-byes to her dear friends, to give her parting advice to her students.”

She lived six full weeks after going on hospice. Hunter had lessons for four of them, and then two final concerts were played. One featured Peg’s former students, accomplished performers from around the country, the other her current students, all children in middle school and high school. Gathered together in her living room, they played Brahms, Dvořák, Chopin, and Beethoven for their adored teacher.

Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms. This role is, observers argue, among life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame. Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done.

Peg got to fulfill her dying role. She got to do so right up to three days before the end, when she fell into delirium and passed in and out of consciousness.

My final remembrance of her is from near the end of her last recital. She’d taken Hunter away from the crowd and given her a book of music she wanted her to keep. Then she put her arm around her shoulder.

“You’re special,” she whispered to her. It was something she never wanted Hunter to forget.

* * *

EVENTUALLY, THE TIME came for my father’s story to end, as well. For all our preparations and all I thought I had learned, we weren’t ready for it, though. Ever since he’d gotten on hospice in the early spring, he’d arrived at what seemed like a new, imperfect, but manageable steady state. Between my mother, the various helpers she had arranged, and his own steel will, he’d been able to string together weeks of good days.

Each had its sufferings and humiliations, to be sure. He needed daily enemas. He soiled the bed. The pain medications made his head feel “fuzzy,” “foggy,” “heavy,” he said, and he disliked that intensely. He did not want to be sedated; he wanted to be able to see people and communicate. Pain, however, was far worse. If he lightened up on the dose of his medications, he experienced severe headaches and a lancing pain that shot up and down his neck and back. When he was in the grip of it, the pain became his entire world. He tinkered constantly with his doses, trying to find the combination that would let him feel neither pain nor fogginess—feel normal, like the person he’d been before his body began failing him. But no matter what the drug or dose, normal was out of reach.

Good enough, however, could be found. Through the spring and early summer, he still had dinner parties at which he’d preside from the head of the table. He made plans for a new building at the college in India. He sent out a dozen e-mails a day, despite the difficulty controlling his weakened hands. He and my mother watched a movie together almost every night and cheered on Novak Djokovic through his two-week run to victory at Wimbledon. My sister brought home her new boyfriend, whom she felt might be “the one”—they did in fact eventually marry—and my father was bowled over with happiness for her. Each day, he found moments worth living for. And as the weeks stretched into months, it seemed like he could continue this way a long time.