Whether it was that first home for a dozen people in a Tupelo neighborhood or the ten homes that were built in the Florence Center’s six-story building, the principles have remained unchanged and echo those of other pioneers. All Green Houses are small and communal. None has more than twelve residents. At the Florence Center, the floors have two wings, each called a Green House, where about ten people live together. The residences are designed to be warm and homey—with ordinary furniture, a living room with a hearth, family-style meals around one big table, a front door with a doorbell. And they are designed to pursue the idea that a life worth living can be created, in this case, by focusing on food, homemaking, and befriending others.
It was the look of the place that attracted Lou—there was nothing dispiritingly institutional about it. But when Lou moved in, the way of life became what he valued most. He could go to bed when he wanted and wake when he wanted. Just that was a revelation to him. There was no parade of staff marching down the halls at 7:00 a.m., rustling everyone through showers and getting them dressed and wheeled into place for the pill line and group mealtime. In most nursing homes (including Chase Memorial, where Thomas had gotten his start), it had been thought that there was no other way. Efficiency demanded that the nursing aide staff have the residents ready for the cook staff, who had to have the residents ready for the activity coordination staff, who kept them out of the rooms for the cleaning staff, et cetera. So that was the way the managers designed the schedules and responsibilities. Thomas flipped the model. He took the control away from the managers and gave it to the frontline caregivers. They were each encouraged to focus on just a few residents and to become more like generalists. They did the cooking, the cleaning, and the helping with whatever need arose, whenever it arose (except for medical tasks, like giving medication, which required grabbing a nurse). As a result, they had more time and contact with each resident—time to talk, eat, play cards, whatever. Each caregiver became for people like Lou what Gerasim was for Ivan Ilyich—someone closer to a companion than a clinician.
It didn’t take much to be a companion for Lou. One staff member gave him a big hug every time she saw him, and he confided to Shelley how much he loved the human contact. He had got so little of it, otherwise. On Tuesday and Thursday afternoons, he’d go down to the coffee shop and play cribbage with his friend Dave, who still visited him. Plus he’d taught the game to a man paralyzed by a stroke who lived in a home on another floor and sometimes came by Lou’s place to play. An aide would hold his cards or, if necessary, Lou would, taking care not to peek. Other afternoons Shelley would come by. She’d bring the dogs, which he loved.
He was also happy, though, to spend most of the day on his own. After breakfast, he’d retreat to his room to watch television—“see about the mess,” as he put it.
“I like keeping up on what’s going on in politics. It’s like a soap opera. Every day another chapter.”
I asked him what channel he watched. Fox?
“No, MSNBC.”
“MSNBC? Are you a liberal?” I said.
He grinned. “Yeah, I’m a liberal. I would vote for Dracula if he said he was a Democrat.”
A while later he took some exercise, walking with his aide around the floor, or outside when the weather was good. This was a big deal to him. In his last months in assisted living, the staff had consigned him to a wheelchair, arguing it wasn’t safe for him to walk, given his fainting spells. “I hated that chair,” he said. The people at the Florence Center let him get rid of it and take his chances with a walker. “I’m kind of proud that I pushed the matter,” he said.
He’d eat lunch at noon around the big dining table with the rest of the house. In the afternoon, if he didn’t have a card game or some other plan, he’d usually read. He had subscriptions to National Geographic and Newsweek. And he still had his books. He’d finished a Robert Ludlum thriller recently. He was starting in on a book about the defeat of the Spanish Armada.
Sometimes, he pulled up to his Dell computer and surfed YouTube videos. I asked him which ones he liked to watch. He gave me an example.
“I hadn’t been to China in many years”—not since the war—“so I said, let me go back to the city of Chengdu, which happens to be one of the oldest cities in the world, going back thousands of years. I was stationed near there. So I got onto the computer, and I punched in ‘Chengdu.’ Pretty soon I was tripping all over the city. Did you know they have synagogues there! I said ‘Wow!’ They tell you there’s one over here, there’s one over there. I was bouncing all over the place,” he said. “The day goes by so fast. It goes by incredibly fast.”
In the evening, after dinner, he liked to lie down on his bed, put on his headphones, and listen to music from his computer. “I like that quiet time at night. You’d be surprised. Everything is quiet. I put the easy listening on.” He’d pull up Pandora and listen to smooth jazz or Benny Goodman or Spanish music—whatever he felt like. “Then I lie back and think,” he said.
One time, visiting Lou, I asked him, “What makes life worth living to you?”
He paused before answering.
“I have moments when I would say I think it’s time, maybe one of the days when I was at a low point,” he said. “Enough is enough, you know? I would badger my Shelley. I would say, you know in Africa, when you got old and you couldn’t produce anymore, they used to take you out in the jungle and leave you to be eaten by wild animals. She thought I was nuts. ‘No,’ I said. ‘I’m not producing anything anymore. I’m costing the government money.’
“I go through that every once in a while. Then I say, ‘Hey, it is what it is. Go with the flow. If they want you around, so what?’”
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 liv
es 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.”
Words like “respond” and “long-term” provide a reassuring gloss on a dire reality. There is no cure for lung cancer at this stage. Even with chemotherapy, the median survival is about a year. But it seemed harsh and pointless for him to confront Sara and Rich with that fact now. Vivian was in a bassinet by the bed. They were working hard to be optimistic. As Sara and Rich later told the social worker who was sent to see them, they did not want to focus on survival statistics. They wanted to focus on “aggressively managing” this diagnosis.
So Sara started on the erlotinib, which produced an itchy, acne-like facial rash and numbing tiredness. She also underwent a needle drainage of the fluid around her lung, but the fluid kept coming back and the painful procedure had to be repeated again and again. So a thoracic surgeon was called in to place a small permanent tube in her chest, which she could drain by turning a stopcock whenever fluid accumulated and interfered with her breathing. Three weeks after her childbirth, she was readmitted to the hospital with severe shortness of breath from a pulmonary embolism—a blood clot in an artery to the lungs, which is dangerous but not uncommon in cancer patients. She was started on a blood thinner. Then test results showed that her tumor cells did not have the mutation that erlotinib targets. When Marcoux told Sara that the drug wasn’t going to work, she had an almost violent physical reaction to the news, bolting to the bathroom in mid-discussion with a sudden bout of diarrhea.
Marcoux recommended a different, more standard chemotherapy, with two drugs called carboplatin and paclitaxel. But the paclitaxel triggered an extreme, nearly overwhelming allergic response, so he switched her to a regimen of carboplatin plus gemcitabine. Response rates, he said, were still very good for patients on this therapy.
She spent the remainder of the summer at home, with Vivian and her husband and her parents, who had moved in to help. She loved being a mother. Between chemotherapy cycles, she began trying to get her life back.
Then, in October, a CT scan showed that the tumor deposits in her left chest and in her lymph nodes had grown substantially. The chemotherapy had failed. She was switched to a drug called pemetrexed. Studies had shown that it could produce markedly longer survival in some patients. In reality, only a small percentage of patients gained very much. On average, the drug extended survival by only two months—from eleven to thirteen months—and that was in patients who, unlike Sara, had responded to first-line chemotherapy.
She worked hard to take the setbacks and side effects in stride. She was upbeat by nature, and she managed to maintain her optimism. Little by little, however, she grew sicker—increasingly exhausted and short of breath. In a matter of months, it was as if she’d aged decades. By November, she didn’t have the wind to walk the length of the hallway from the parking garage to Marcoux’s office; Rich had to push her in a wheelchair.
A few days before Thanksgiving, she had another CT scan, which showed that the pemetrexed—her third drug regimen—wasn’t working, either. The lung cancer had spread: from the left chest to the right, to the liver, to the lining of her abdomen, and to her spine. Time was running out.
* * *
THIS IS THE moment in Sara’s story that poses our difficult question, one for everyone living in our era of modern medicine: What do we want Sara and her doctors to do now? Or, to put it another way, if you were the one who had metastatic cancer—or, for that matter, any similarly advanced and incurable condition—what would you want your doctors to do?
The issue has gotten attention, in recent years, for reasons of expense. The soaring cost of health care has become the greatest threat to the long-term solvency of most advanced nations, and the incurable account for a lot of it. In the United States, 25 percent of all Medicare spending is for the 5 percent of patients who are in their final year of life, and most of that money goes for care in their last couple of months that is of little apparent benefit. The United States is often thought to be unusual in this regard, but it doesn’t appear to be. Data from elsewhere are more limited, but where they are available—for instance, from countries like the Netherlands and Switzerland—the results are similar.
Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. A 2011 study, for instance, found that medical spending for a breast cancer patient in the first year of diagnosis averaged an estimated $28,000, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy. Costs fell after that to about $2,000 a year. For a patient whose cancer proves fatal, though, the cost curve is U-shaped, rising toward the end—to an average of $94,000 during the last year of life with a metastatic breast cancer. Our medical system is excellent at trying to stave off death with $12,000-a-month chemotherapy, $4,000-a-day intensive care, $7,000-an-hour surgery. But, ultimately, death comes, and few are good at knowing when to stop.
While seeing a patient in an intensive care unit at my hospital, I stopped to talk with the critical care physician on duty, someone I’d known since college. “I’m running a warehouse for the dying,” she said bleakly. Of the ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-ol
d woman at the end of her life, with irreversible congestive heart failure, who was in the ICU for the second time in three weeks, drugged to oblivion and tubed in most natural orifices as well as a few artificial ones. Or the seventy-year-old with a cancer that had metastasized to her lungs and bone and a fungal pneumonia that arises only in the final phase of the illness. She had chosen to forgo treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics. Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheostomy, and she had mentioned that she didn’t want to die that way. But her children couldn’t let her go and asked to proceed with the placement of various devices: a permanent tracheostomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness.
Almost all these patients had known, for some time, that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the final stage.
“We are having more conversation now about what patients want for the end of their life, by far, than they have had in all their lives to this point,” my friend said. “The problem is that’s way too late.”
In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an ICU because of terminal illness is for most people a kind of failure. You lie attached to a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said good-bye or “It’s okay” or “I’m sorry” or “I love you.”
Being Mortal: Medicine and What Matters in the End Page 14