Being Mortal (30 page)

A year and a half after returning, Peg was found to have a leukemia-like malignancy caused by her radiation treatment. She went back on chemotherapy but somehow kept teaching through it. Every few weeks, she’d have to reschedule Hunter’s lesson, and we had to explain the situation to Hunter, who was just thirteen at the time. But Peg always found a way to keep going.

Then for two straight weeks, she postponed the lessons. That was when I got the call from Martin. He was phoning from the hospital. Peg had been admitted for several days. He put his cell on speaker so she could talk. She sounded weak—there were long pauses when she spoke—but she was clear-voiced about the situation. The leukemia treatment had stopped working a few weeks before, she said. She developed a fever and infection due to her compromised immune system. Imaging also showed her original cancer had come back in her hip and in her liver. The recurrent disease began to cause immobilizing hip pain. When it made her incontinent, that felt like the final straw. She checked into the hospital at that point, and she didn’t know what to do.

What had the doctors told her they could do? I asked.

“Not much,” she said. She sounded flat, utterly hopeless. They were giving her blood transfusions, pain medications, and steroids for tumor-caused fevers. They’d stopped giving her chemotherapy.

I asked her what her understanding of her condition was.

She said she knew she was going to die. There’s nothing more they can do, she said, an edge of anger creeping into her voice.

I asked her what her goals were, and she didn’t have any she could see possible. When I asked what her fears for the future were, she named a litany: facing more pain, suffering the humiliation of losing more of her bodily control, being unable to leave the hospital. She choked up as she spoke. She’d been there for days just getting worse, and she feared she didn’t have many more. I asked her if they’d talked to her about hospice. They had, she said, but she didn’t see what it could do to help her.

Some in her position, offered “death with dignity,” might have taken it as the only chance for control when no other options seemed apparent. Martin and I persuaded Peg to try hospice. It’d at least let her get home, I said, and might help her more than she knew. I explained how hospice’s aim, at least in theory, was to give people their best possible day, however they might define it under the circumstances. It seemed like it had been a while since she’d had a good day, I said.

“Yes, it has—a long while,” she said.

That seemed worth hoping for, I said—just one good day.

She went home on hospice within forty-eight hours. We broke the news to Hunter that Peg would not be able to give her lessons anymore, that she was dying. Hunter was struck low. She adored Peg. She wanted to know if she could see her one more time. We had to tell her that we didn’t think so.

A few days later, we got a surprising call. It was Peg. If Hunter
was willing, she said, she’d like to resume teaching her. She’d understand if Hunter didn’t want to come. She didn’t know how many more lessons she could manage, but she wanted to try.

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.

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:

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.

As a person’s end draws near, there comes a moment when responsibility shifts to someone else to decide what to do. And we’d mostly prepared for that moment. We’d had the hard conversations. He’d already spelled out how he wanted the end of his story to be written. He wanted no ventilators and no suffering. He wanted to remain home and with the people he loved.

But the arrow of events refuses to follow a steady course and that plays havoc with a surrogate’s mind. Only the day before, it seemed he might have weeks, even months. Now she was supposed to believe that hours might be a stretch? My mother’s heart was breaking, but as we talked, she recognized the pathway we risked heading down, and that the kind of life intensive care would preserve for him was far from the one he wanted. Endings matter, not just for the person but, perhaps even more, for the ones left behind. She decided to tell them not to intubate him. I called my sister and caught her as she was about to board her train into work. She was not ready for the news, either.

“How could it be?” she asked. “Are we certain he can’t return to how he was yesterday?”

“It seems unlikely,” I said. In few families does everyone see such situations the same. I arrived the quickest at the idea that my father was coming to the end, and I worried most about the mistake of prolonging his suffering too long. I saw the opportunity for a peaceful end as a blessing. But to my sister, and even more my mother, it didn’t seem certain at all that he was at the end, and the mistake that loomed largest to them was the possibility of failing to preserve his life long enough. We agreed not to let the hospital do anything further to resuscitate him, while
hoping against hope that he’d hang on long enough for my sister and me to get there to see him. We both searched for flights as they moved him to a private hospital room.

Later that afternoon, my mother called as I sat at an airport departure gate.

“He’s awake!” she said, over the moon. He’d recognized her. He was sharp enough to even ask what his blood pressure was. I felt abashed for believing that he wouldn’t come to. No matter how much one has seen, nature refuses predictability. More than this, though, what I kept thinking was: I’m going to be there. He may even be all right for a while longer.

He was alive just four more days, as it turned out. When I arrived at his bedside, I found him alert and unhappy about awaking in the hospital. No one listens to him, he said. He’d awoken in severe pain but the medical staff wouldn’t give him enough medication to stop it, fearing he might lose consciousness again. I asked the nurse to give him the full dose he took at home. She had to get permission from the doctor on call, and still he approved only half.

Finally, at 3:00 a.m., my father had had enough. He began shouting. He demanded that they take out his IVs and let him go home. “Why are you doing nothing?” he yelled. “Why are you letting me suffer?” He’d become incoherent with pain. He called the Cleveland Clinic—two hundred miles away—on his cell phone and told a confused doctor on duty to “Do something.” His night nurse finally got permission for a slug of an intravenous narcotic, but he refused it. “It doesn’t work,” he said. Finally, at 5:00 a.m., we persuaded him to take the injection, and the pain began to subside. He became calm. But he still wanted to go home. In a hospital built to ensure survival at all costs and unclear how to do otherwise, he understood his choices would never be his own.

We arranged for the medical staff to give him his morning
dose of medication, stop his oxygen and his antibiotics for his pneumonia, and let us take him. By midmorning he was back in his bed.

“I do not want suffering,” he repeated when he had me alone. “Whatever happens, will you promise me you won’t let me suffer?”

“Yes,” I said.

That was harder to achieve than it would seem. Just urinating, for instance, proved a problem. His paralysis had advanced from just the week before, and one sign was that he became unable to pee. He could still feel when his bladder became full but could make nothing come out. I helped him to the bathroom and swiveled him onto the seat. Then I waited while he sat there. Half an hour passed. “It’ll come,” he insisted. He tried not to think about it. He pointed out the toilet seat from Lowe’s he’d had installed a couple months before. It was electric, he said. He loved it. It could wash his bottom with a burst of water and dry it. No one had to wipe him. He could take care of himself.