Being Mortal: Medicine and What Matters in the End

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.

 

In retrospect, there were signs that he couldn’t. His weight continued to drop. The doses of pain medication he required were increasing. During the first couple days of August, I received a series of garbled e-mails. “Dear Atuli whohirnd li9ke Sude,” began one. The last one said:

 

Dear Atul

 

sorry for scrambeled letth ter. i having problems.

 

-With love

 

Dad—

 

On the phone, he spoke more slowly, with long pauses between sentences. He explained that he sometimes felt confused and was having trouble communicating. His e-mails were not making sense to him, he said, although he thought they did when he first wrote them. His world was closing in.

 

Then on Saturday, August 6, at 8:00 a.m., my mother called, frightened. “He’s not waking up,” she said. He was breathing, but she couldn’t rouse him. It was the medication, we thought. The night before he’d insisted on taking a whole tablet of buprenorphine, a narcotic pill, instead of a half pill like he’d been taking, my mother explained. She’d argued with him, but he’d become angry. He wanted no pain, he said. Now he wasn’t waking up. In doctor mode, she noted his pinpoint pupils, a sign of a narcotic overdose. We decided to wait it out and let the medication wear off.

 

Three hours later, she phoned again. She had called an ambulance, not the hospice agency. “He was turning blue, Atul.” She was in the hospital emergency room. “His blood pressure is fifty. He’s still not waking up. His oxygen is low.” The medical staff gave him naloxone, a narcotic-reversal agent, and if he had overdosed, that should have woken him. But he remained unresponsive. A stat chest X-ray showed pneumonia in his right lung. They gave him a face mask with 100 percent oxygen, antibiotics, and fluids. But his oxygen level would not come up above 70 percent, an unsurvivable level. Now, my mother said, they were asking whether they should intubate him, put him on drips to support his blood pressure, and move him to the ICU. She didn’t know what to do.

 

Gawande, Atul's books