Being Mortal: Medicine and What Matters in the End

We had been talking in a sitting room off the kitchen with ceiling-high windows on two sides. The summer was turning to fall. The light was white and warm. We could see the town of Chelsea below us, Boston Harbor’s Broad Sound in the distance, the ocean-blue sky all around. We’d been talking about the story of his life for almost two hours when it struck me that, for the first time I can remember, I did not fear reaching his phase of life. Lou was ninety-four years old and there was certainly nothing glamorous about it. His teeth were like toppled stones. He had aches in every joint. He’d lost a son and a wife, and he could no longer get around without a walker that had a yellow tennis ball jammed onto each of its front feet. He sometimes got confused and lost the thread of our conversation. But it was also apparent that he was able to live in a way that made him feel that he still had a place in this world. They still wanted him around. And that raised the possibility that the same could be the case for any of us.

 

The terror of sickness and old age is not merely the terror of the losses one is forced to endure but also the terror of the isolation. As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world—to make choices and sustain connections to others according to their own priorities. In modern society, we have come to assume that debility and dependence rule out such autonomy. What I learned from Lou—and from Ruth Barrett, Anne Braveman, Rita Kahn, and lots of others—was that it is very much possible.

 

“I don’t worry about the future,” Lou said. “The Japanese have the word ‘karma.’ It means—if it’s going to happen, there’s nothing I can do to stop it. I know my time is limited. And so what? I’ve had a good shot at it.”

 

 

 

 

 

6 ? Letting Go

 

 

 

Before I began to think about what awaits my older patients—people very much like Lou Sanders and the others—I’d never ventured beyond my surgical office to follow them into their lives. But once I’d seen the transformation of elder care under way, I was struck by the simple insight on which it rested, and by its profound implications for medicine, including what happens in my own office. And the insight was that as people’s capacities wane, whether through age or ill health, making their lives better often requires curbing our purely medical imperatives—resisting the urge to fiddle and fix and control. It was not hard to see how important this idea could be for the patients I encountered in my daily practice—people facing mortal circumstances at every phase of life. But it posed a difficult question: When should we try to fix and when should we not?

 

Sara Thomas Monopoli was just thirty-four and pregnant with her first child when the doctors at my hospital learned that she was going to die. It started with a cough and a pain in her back. Then a chest X-ray showed that her left lung had collapsed and her chest was filled with fluid. A sample of the fluid was drawn off with a long needle and sent for testing. Instead of an infection, as everyone had expected, it was lung cancer, and it had already spread to the lining of her chest. Her pregnancy was thirty-nine weeks along, and the obstetrician who had ordered the test broke the news to her as she sat with her husband and her parents. The obstetrician didn’t get into the prognosis—she would bring in an oncologist for that—but Sara was stunned. Her mother, who had lost her best friend to lung cancer, began crying.

 

The doctors wanted to start treatment right away, and that meant inducing labor to get the baby out. For the moment, though, Sara and her husband, Rich, sat by themselves on a quiet terrace off the labor floor. It was a warm Monday in June. She took Rich’s hands, and they tried to absorb what they had heard. She had never smoked or lived with anyone who had. She exercised. She ate well. The diagnosis was bewildering. “This is going to be okay,” Rich told her. “We’re going to work through this. It’s going to be hard, yes. But we’ll figure it out. We can find the right treatment.” For the moment, however, they had a baby to think about.

 

“So Sara and I looked at each other,” Rich recalled, “and we said, ‘We don’t have cancer on Tuesday. It’s a cancer-free day. We’re having a baby. It’s exciting. And we’re going to enjoy our baby.’” On Tuesday, at 8:55 p.m., Vivian Monopoli, seven pounds nine ounces, was born. She had wavy brown hair, like her mom, and she was in perfect health.

 

The next day, Sara underwent blood tests and body scans. Paul Marcoux, an oncologist, met with her and her family to discuss the findings. He explained that she had a non-small cell lung cancer that had started in her left lung. Nothing she had done had brought the disease on. More than 15 percent of lung cancers—more than people realize—occur in nonsmokers. Hers was advanced, having metastasized to multiple lymph nodes in her chest and its lining. The cancer was inoperable. But there were chemotherapy options, notably a drug called erlotinib, which targets a gene mutation commonly found in lung cancers of female nonsmokers; 85 percent of them respond to the drug, and, as Marcoux said, “some of these responses can be long-term.”

 

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