Being Mortal: Medicine and What Matters in the End (31 page)

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.

“Have you tried it?” he asked.

“That would be no,” I said.

“You ought to,” he said, smiling.

But still nothing came out. Then the bladder spasms began. He groaned when they came over him. “You’re going to have to catheterize me,” he said. The hospice nurse, expecting this moment would come, had brought the supplies and trained my mother. But I’d done it a hundred times for my own patients. So I pulled my father up from the seat, got him back to bed, and set about doing it for him, his eyes squeezed shut the entire time. It’s not something a person ever thinks they will come to. But I got the catheter in, and the urine flooded out. The relief was oceanic.

His greatest struggle remained the pain from his tumor—not because it was difficult to control but because it was difficult to agree on how much to control it. By the third day, he’d become unarousable again for long periods. The question became whether to keep giving him his regular dose of liquid morphine, which could be put under his tongue where it would absorb into his bloodstream through his mucous membranes. My sister and I thought we should, fearing that he might wake up in pain. My mother thought we shouldn’t, fearing the opposite.

“Maybe if he had a little pain, he’d wake up,” she said, her eyes welling. “He still has so much he can do.”

Even in his last couple of days, she was not wrong. When he was permitted to rise above the demands of his body, he took the opportunity for small pleasures greedily. He could still enjoy certain foods and ate surprisingly well, asking for chapatis, rice, curried string beans, potatoes, yellow split-pea dahl, black-eyed-pea chutney, and
shira
, a sweet dish from his youth. He talked to his grandchildren by phone. He sorted photos. He gave instructions about unfinished projects. He had but the tiniest fragments of life left that he could grab, and we were agonizing over them. Could we get him another one?

Nonetheless, I remembered my pledge to him and gave him his morphine every two hours, as planned. My mother anxiously accepted it. For long hours, he lay quiet and stock-still, except for the rattle of his breathing. He’d have a sharp intake of breath—it sounded like a snore that would shut off suddenly, as if a lid had come down—followed a second later by a long exhale. The air rushing past the mucoid fluid in his windpipe sounded like someone shaking pebbles in a hollow tube in his chest. Then there’d be silence for what seemed like forever before the cycle would start up again.

We got used to it. He lay with his hands across his belly, peaceful, serene. We sat by his bedside for long hours, my mother reading the
Athens Messenger
, drinking tea, and worrying whether my sister and I were getting enough to eat. It was comforting to be there.

Late on his penultimate afternoon, he broke out into a soaking sweat. My sister suggested that we change his shirt and wash him. We lifted him forward, into a sitting position. He was unconscious, a completely dead weight. We tried getting his shirt over his head. It was awkward work. I tried to remember how nurses do it. Suddenly I realized his eyes were open.

“Hi, Dad,” I said. He just looked for a while, observing, breathing hard.

“Hi,” he said.

He watched as we cleaned his body with a wet cloth, gave him a new shirt.

“Do you have any pain?”

“No.” He motioned that he wanted to get up. We got him into a wheelchair and took him to a window looking out onto the backyard, where there were flowers, trees, sun on a beautiful summer day. I could see that his mind was gradually clearing.

Later, we wheeled him to the dinner table. He had some mango, papaya, yogurt, and his medications. He was silent, breathing normally again, thinking.

“What are you thinking?” I asked.

“I’m thinking how to not prolong the process of dying. This—this food prolongs the process.”

My mom didn’t like hearing this.

“We’re happy taking care of you, Ram,” she said. “We love you.”

He shook his head.

“It’s hard, isn’t it?” my sister said.

“Yes. It’s hard.”

“If you could sleep through it, is that what you’d prefer?” I asked.

“Yes.”

“You don’t want to be awake, aware of us, with us like this?” my mother asked.

He didn’t say anything for a moment. We waited.

“I don’t want to experience this,” he said.

The suffering my father experienced in his final day was not exactly physical. The medicine did a good job of preventing pain. When he surfaced periodically, at the tide of consciousness, he would smile at our voices. But then he’d be fully ashore and realize that it was not over. He’d realize that all the anxieties of enduring that he’d hoped would be gone were still there: the problems with his body, yes, but more difficult for him the problems with his mind—the confusion, the worries about his unfinished work, about Mom, about how he’d be remembered. He was at peace in sleep, not in wakefulness. And what he wanted for the final lines of his story, now that nature was pressing its limits, was peacefulness.

During his final bout of wakefulness, he asked for the grandchildren. They were not there, so I showed him pictures on my iPad. His eyes went wide, and his smile was huge. He looked at every picture in detail.

Then he descended back into unconsciousness. His breathing stopped for twenty or thirty seconds at a time. I’d be sure it was over, only to find that his breathing would start again. It went on this way for hours.

Finally, around ten after six in the afternoon, while my mother and sister were talking and I was reading a book, I noticed that he’d stopped breathing for longer than before.

“I think he’s stopped,” I said.

We went to him. My mother took his hand. And we listened, each of us silent.

No more breaths came.

Epilogue

Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits, and the potential value of this power was a central reason I became a doctor. But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be.

We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?

The field of palliative care emerged over recent decades to bring this kind of thinking to the care of dying patients. And the specialty is advancing, bringing the same approach to other seriously ill patients, whether dying or not. This is cause for encouragement. But it is not cause for celebration. That will be warranted only when all clinicians apply such thinking to every person they touch. No separate specialty required.

If to be human is to be limited, then the role of caring professions and institutions—from surgeons to nursing homes—ought to be aiding people in their struggle with those limits. Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking.

I never expected that among the most meaningful experiences I’d have as a doctor—and, really, as a human being—would come from helping others deal with what medicine cannot do as well as what it can. But it’s proved true, whether with a patient like Jewel Douglass, a friend like Peg Bachelder, or someone I loved as much as my father.

*   *   *

MY FATHER CAME
to his end never having to sacrifice his loyalties or who he was, and for that I am grateful. He was clear about his wishes even for after his death. He left instructions for my mother, my sister, and me. He wanted us to cremate his body and spread the ashes in three places that were important to him—in Athens, in the village where he’d grown up, and on the Ganges River, which is sacred to all Hindus. According to Hindu mythology, when a person’s remains touch the great river, he or she is assured eternal salvation. So for millennia, families have brought the ashes of their loved ones to the Ganges and spread them upon its waters.

A few months after my father’s death we therefore followed in those footsteps. We traveled to Varanasi, the ancient city of temples on the banks of the Ganges, which dates back to the twelfth century
BC
. Waking before the sun rose, we walked out onto the ghats, the walls of steep steps lining the banks of the massive river. We’d secured ahead of time the services of a pandit, a holy man, and he guided us onto a small wooden boat with a rower who pulled us out onto the predawn river.

The air was crisp and chilly. A shroud of white fog hung over the city’s spires and the water. A temple guru sang mantras broadcast over staticky speakers . The sound drifted across the river to the early bathers with their bars of soap, the rows of washermen beating clothes on stone tablets, and a kingfisher sitting on a mooring. We passed riverbank platforms with huge stacks of wood awaiting the dozens of bodies to be cremated that day. When we’d traveled far enough out into the river and the rising sun became visible through the mist, the pandit began to chant and sing.