Authors: Atul Gawande
Creed arranged for a specialized “comfort pack” to be delivered by FedEx and stored in a minirefrigerator by Dave’s bed. It contained a dose of morphine for breakthrough pain or shortness of breath, Ativan for anxiety attacks, Compazine for nausea, Haldol for delirium, Tylenol for fever, and atropine for drying up the wet upper-airway rattle that people can get in their final hours. If any such problem developed, Sharon was instructed to call the twenty-four-hour hospice nurse on duty, who would provide instructions about which rescue medications to use and, if necessary, come out to help.
Dave and Sharon were finally able to sleep through the night at home. Creed or another nurse came to see him every day, sometimes twice a day. Three times that week, Sharon used the emergency hospice line to help her deal with Dave’s pain crises or hallucinations. After a few days, they were even able to go out to a favorite restaurant; he wasn’t hungry, but they enjoyed just being there and the memories it stirred.
The hardest part so far, Sharon said, was deciding to forgo the two-liter intravenous feedings that Dave had been receiving each day. Although they were his only source of calories, the hospice staff encouraged discontinuing them because his body did not seem to be absorbing the nutrition. The infusion of sugars, proteins, and fats made the painful swelling of his skin and his shortness of breath worse—and for what? The mantra was: live for now. Sharon had balked, for fear that she’d be starving him. The night before our visit, however, she and Dave decided to try going without the infusion. By morning, the swelling was markedly reduced. He could move more, and with less discomfort. He also began to eat a few morsels of food, just for the taste of it, and that made Sharon feel better about the decision.
When we arrived, Dave was making his way back to bed
after a shower, his arm around his wife’s shoulders and his slippered feet taking one shuffling step at a time.
“There’s nothing he likes better than a long, hot shower,” Sharon said. “He’d live in the shower if he could.”
Dave sat on the edge of his bed in fresh pajamas, catching his breath, and Creed spoke to him as his daughter, Ashlee, ran in and out of the room in her beaded pigtails, depositing stuffed animals in her dad’s lap.
“How’s your pain on a scale of one to ten?” Creed asked.
“A six,” he said.
“Did you hit the pump?”
He didn’t answer for a moment. “I’m reluctant,” he admitted.
“Why?” Creed asked.
“It feels like defeat,” he said.
“Defeat?”
“I don’t want to become a drug addict,” he explained. “I don’t want to need this.”
Creed got down on her knees in front of him. “Dave, I don’t know anyone who can manage this kind of pain without the medication,” she said. “It’s not defeat. You’ve got a beautiful wife and daughter, and you’re not going to be able to enjoy them with the pain.”
“You’re right about that,” he said, looking at Ashlee as she gave him a little horse. And he pressed the button.
Dave Galloway died one week later—at home, at peace, and surrounded by family. A week after that, Lee Cox died, too. But as if to show just how resistant to formula human lives are, Cox had never reconciled herself to the incurability of her illnesses. So when her family found her in cardiac arrest one morning, they followed her wishes and called 911 instead of the hospice service. The emergency medical technicians and firefighters and police rushed in. They pulled off her clothes and pumped her
chest, put a tube in her airway and forced oxygen into her lungs, and tried to see if they could shock her heart back. But such efforts rarely succeed with terminal patients, and they did not succeed with her.
Hospice has tried to offer a new ideal for how we die. Although not everyone has embraced its rituals, those who have are helping to negotiate an
ars moriendi
for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment.
JUST BEFORE THANKSGIVING
, Sara Monopoli, her husband, Rich, and her mother, Dawn Thomas, met with Dr. Marcoux to discuss the options she had left. By this point, Sara had undergone three rounds of chemotherapy with limited, if any, effect. Perhaps Marcoux could have discussed what she most wanted as death neared and how best to achieve those wishes. But the signal he got from Sara and her family was that they wished to talk only about the next treatment options. They did not want to talk about dying.
Later, after her death, I spoke to Sara’s husband and her parents. Sara knew that her disease was incurable, they pointed out. The week after she was given the diagnosis and delivered her baby, she spelled out her wishes for Vivian’s upbringing after she was gone. On several occasions, she told her family that she did not want to die in the hospital. She wanted to spend her final moments peacefully at home. But the prospect that those moments might be coming soon, that there might be no way to slow the disease, “was not something she or I wanted to discuss,” her mother said.
Her father, Gary, and her twin sister, Emily, still held out hope for a cure. The doctors simply weren’t looking hard enough, they
felt. “I just couldn’t believe there wasn’t something,” Gary said. For Rich, the experience of Sara’s illness had been disorienting: “We had a baby. We were young. And this was so shocking and so odd. We never discussed stopping treatment.”
Marcoux took the measure of the room. With almost two decades of experience treating lung cancer, he had been through many of these conversations. He has a calm, reassuring air and a native Minnesotan’s tendency to avoid confrontation or over-intimacy. He tries to be scientific about decisions.
“I know that the vast majority of my patients are going to die of their disease,” he told me. The data show that, after failure of second-line chemotherapy, lung cancer patients rarely get any added survival time from further treatments and often suffer significant side effects. But he, too, has his hopes.
He told them that, at some point, “supportive care” was an option for them to think about. But, he went on, there were also experimental therapies. He told them about several that were under trial. The most promising was a Pfizer drug that targeted one of the mutations found in her cancer’s cells. Sara and her family instantly pinned their hopes on it. The drug was so new that it didn’t even have a name, just a number—PF0231006—and this made it all the more enticing.
There were a few hovering issues, including the fact that the scientists didn’t yet know the safe dose. The drug was only in a Phase I trial—that is, a trial designed to determine the toxicity of a range of doses, not whether the drug worked. Furthermore, a test of the drug against her cancer cells in a petri dish showed no effect. But Marcoux thought that these were not decisive obstacles, just negatives. The critical problem was that the rules of the trial excluded Sara because of the pulmonary embolism she had developed that summer. To enroll, she would need to wait two months in order to get far enough past the episode. In
the meantime, he suggested trying another conventional chemotherapy, called vinorelbine. Sara began the treatment the Monday after Thanksgiving.
It’s worth pausing to consider what had just happened. Step by step, Sara ended up on a fourth round of chemotherapy, one with a minuscule likelihood of altering the course of her disease and a great likelihood of causing debilitating side effects. An opportunity to prepare for the inevitable was forgone. And it all happened because of an assuredly normal circumstance: a patient and family unready to confront the reality of her disease.
I asked Marcoux what he hopes to accomplish for terminal lung cancer patients when they first come to see him. “I’m thinking, can I get them a pretty good year or two out of this?” he said. “Those are my expectations. For me, the long tail for a patient like her is three to four years.” But this is not what people want to hear. “They’re thinking ten to twenty years. You hear that time and time again. And I’d be the same way if I were in their shoes.”
You’d think doctors would be well equipped to navigate the shoals here, but at least two things get in the way.
First, our own views may be unrealistic. A study led by the sociologist Nicholas Christakis asked the doctors of almost five hundred terminally ill patients to estimate how long they thought their patient would survive and then followed the patients. Sixty-three percent of doctors overestimated their patient’s survival time. Just 17 percent underestimated it. The average estimate was 530 percent too high. And the better the doctors knew their patients, the more likely they were to err.
Second, we often avoid voicing even these sentiments. Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed. More than 40 percent of oncologists admit to
offering treatments that they believe are unlikely to work. In an era in which the relationship between patient and doctor is increasingly miscast in retail terms—“the customer is always right”—doctors are especially hesitant to trample on a patient’s expectations. You worry far more about being overly pessimistic than you do about being overly optimistic. And talking about dying is enormously fraught. When you have a patient like Sara Monopoli, the last thing you want to do is grapple with the truth. I know, because Marcoux wasn’t the only one avoiding that conversation with her. I was, too.
Earlier that summer, a PET scan had revealed that, in addition to her lung cancer, she had thyroid cancer, which had spread to the lymph nodes of her neck, and I was called in to decide whether to operate. This second, unrelated cancer was in fact operable. But thyroid cancers take years to become lethal. Her lung cancer would almost certainly end her life long before her thyroid cancer caused any trouble. Given the extent of the surgery that would have been required and the potential complications, the best course was to do nothing. But explaining my reasoning to Sara meant confronting the mortality of her lung cancer, something that I felt ill prepared to do.
Sitting in my clinic, Sara did not seem discouraged by the discovery of this second cancer. She seemed determined. She’d read about the good outcomes from thyroid cancer treatment. So she was geared up, eager to discuss when to operate. And I found myself swept along by her optimism. Suppose I was wrong, I wondered, and she proved to be that miracle patient who survived metastatic lung cancer? How could I let her thyroid cancer go untreated?
My solution was to avoid the subject altogether. I told Sara that there was relatively good news about her thyroid cancer—it was slow growing and treatable. But the priority was her lung
cancer, I said. Let’s not hold up the treatment for that. We could monitor the thyroid cancer for now and plan surgery in a few months.
I saw her every six weeks and noted her physical decline from one visit to the next. Yet, even in a wheelchair, Sara would always arrive smiling, makeup on and bangs bobby-pinned out of her eyes. She’d find small things to laugh about, like the strange protuberances the tubes made under her dress. She was ready to try anything, and I found myself focusing on the news about experimental therapies for her lung cancer. After one of her chemotherapies seemed to shrink the thyroid cancer slightly, I even raised with her the possibility that an experimental therapy could work against both her cancers, which was sheer fantasy. Discussing a fantasy was easier—less emotional, less explosive, less prone to misunderstanding—than discussing what was happening before my eyes.
Between the lung cancer and the chemo, Sara became steadily sicker. She slept most of the time and could do little out of the house. Clinic notes from December describe shortness of breath, dry heaves, coughing up blood, severe fatigue. In addition to the drainage tubes in her chest, she required needle-drainage procedures in her abdomen every week or two to relieve the severe pressure from the liters of fluid that the cancer was producing there.
A CT scan in December showed that the lung cancer was spreading through her spine, liver, and lungs. When we met in January, she could move only slowly and uncomfortably. Her lower body had become so swollen that her skin was taut. She couldn’t speak more than a sentence without pausing for breath. By the first week of February, she needed oxygen at home to breathe. Enough time had elapsed since her pulmonary embolism, however, that she could start on Pfizer’s experimental drug.
She just needed one more set of scans for clearance. These revealed that the cancer had spread to her brain, with at least nine metastatic growths up to half an inch in size scattered across both hemispheres. The experimental drug was not designed to cross the blood-brain barrier. PF0231006 was not going to work.
And still Sara, her family, and her medical team remained in battle mode. Within twenty-four hours, Sara was brought in to see a radiation oncologist for whole-brain radiation to try to reduce the metastases. On February 12, she completed five days of radiation treatment, which left her immeasurably fatigued, barely able to get out of bed. She ate almost nothing. She weighed twenty-five pounds less than she had in the fall. She confessed to Rich that, for the past two months, she had experienced double vision and was unable to feel her hands.
“Why didn’t you tell anyone?” he asked her.
“I just didn’t want to stop treatment,” she said. “They would make me stop.”
She was given two weeks to recover her strength after the radiation. Then we had a different experimental drug she could try, one from a small biotech company. She was scheduled to start on February 25. Her chances were rapidly dwindling. But who was to say they were zero?
In 1985, the paleontologist and writer Stephen Jay
Gould published an extraordinary essay entitled “The Median Isn’t the Message” after he had been given a diagnosis, three years earlier, of abdominal mesothelioma, a rare and lethal cancer usually associated with asbestos exposure. He went to a medical library when he got the diagnosis and pulled out the latest scientific articles on the disease. “The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median survival of only eight months after discovery,” he wrote. The
news was devastating. But then he began looking at the graphs of the patient-survival curves.