Being Mortal: Medicine and What Matters in the End (30 page)

At root, the debate is about what mistakes we fear most—the mistake of prolonging suffering or the mistake of shortening valued life. We stop the healthy from committing suicide because we recognize that their psychic suffering is often temporary. We believe that, with help, the remembering self will later see matters differently than the experiencing self—and indeed only a minority of people saved from suicide make a repeated attempt; the vast majority eventually report being glad to be alive. But for the terminally ill who face suffering that we know will increase, only the stonehearted can be unsympathetic.

All the same, I fear what happens when we expand the terrain of medical practice to include actively assisting people with speeding their death. I am less worried about abuse of these powers than I am about dependence on them. Proponents have crafted the authority to be tightly circumscribed to avoid error and misuse. In places that allow physicians to write lethal prescriptions—countries like the Netherlands, Belgium, and Switzerland and states like Oregon, Washington, and Vermont—they can do so only for terminally ill adults who face unbearable suffering, who make repeated requests on separate occasions, who are certified not to be acting out of depression or other mental illness, and who have a second physician confirming they meet the criteria. Nonetheless, the larger culture invariably determines how such authority is employed. In the Netherlands, for instance, the system has existed for decades, faced no serious opposition, and significantly grown in use. But the fact that, by 2012, one in thirty-five Dutch people sought assisted suicide at their death is not a measure of success. It is a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill.

Certainly, suffering at the end of life is sometimes unavoidable and unbearable, and helping people end their misery may be necessary. Given the opportunity, I would support laws to provide these kinds of prescriptions to people. About half don’t even use their prescription. They are reassured just to know they have this control if they need it. But we damage entire societies if we let providing this capability divert us from improving the lives of the ill. Assisted living is far harder than assisted death, but its possibilities are far greater, as well.

In the throes of suffering, this can be difficult to see. One day I got a call from the husband of Peg Bachelder, my daughter Hunter’s piano teacher. “Peg’s in the hospital,” Martin said.

I’d known she had serious health issues. Two and a half years earlier, she’d developed a right hip pain. The condition was misdiagnosed for almost a year as arthritis. When it got worse, one physician even recommended seeing a psychiatrist and gave her a book on “how to let go of your pain.” But imaging finally revealed that she had a five-inch sarcoma, a rare soft-tissue cancer, eating into her pelvis and causing a large blood clot in her leg. Treatment involved chemotherapy, radiation, and radical surgery removing a third of her pelvis and reconstructing it with metal. It was a year in hell. She was hospitalized for months with complications. She’d loved cycling, yoga, walking her Shetland sheepdog with her husband, playing music, and teaching her beloved students. She’d had to let go of all of that.

Eventually, however, Peg recovered and was able to return to teaching. She needed Canadian crutches—the kind that have a cuff around the forearm—to get around but otherwise remained her graceful self and refilled her roster of students in no time. She was sixty-two, tall, with big round glasses, a thick bob of auburn hair, and a lovely gentle way that made her an immensely popular teacher. When my daughter struggled with grasping a sound or technique, Peg was never hurried. She’d have her try this and then try that, and when Hunter finally got it, Peg would burble with genuine delight and hug her close.

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:

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.