Being Mortal: Medicine and What Matters in the End (20 page)

Creed gave her a hug and one last reminder before we left. “What do you do if you have chest pain that doesn’t go away?” she asked.

“Take a nitro,” Cox said, referring to the nitroglycerin pill that she can slip under her tongue.

“And?”

“Call you.”

“Where’s the number?”

She pointed to the twenty-four-hour hospice call number that was taped beside her phone.

Outside, I confessed that I was confused by what Creed was doing. A lot of it seemed to be about extending Cox’s life. Wasn’t the goal of hospice to let nature take its course?

“That’s not the goal,” Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in the priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, chaplains, and social workers to help people with a fatal illness have the fullest possible lives right now—much as nursing home reformers deploy staff to help people with severe disabilities. In terminal illness that means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as feasible, or getting out with family once in a while—not on whether Cox’s life would be longer or shorter. Nonetheless, when she was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.

Hospice is not an easy choice for a person to make. A hospice nurse enters people’s lives at a strange moment—when they have understood that they have a fatal illness but not necessarily acknowledged that they are dying. “I’d say only about a quarter have accepted their fate when they come into hospice,” Creed said. When she first encounters her patients, many feel that their doctors have simply abandoned them. “Ninety-nine percent understand they’re dying, but one hundred percent hope they’re not,” she told me. “They still want to beat their disease.” The initial visit is always tricky, but she has found ways to smooth things over. “A nurse has five seconds to make a patient like you and trust you. It’s in the whole way you present yourself. I do not come in saying, ‘I’m so sorry.’ Instead, it’s: ‘I’m the hospice nurse, and here’s what I have to offer you to make your life better. And I know we don’t have a lot of time to waste.’”

That was how she started with Dave Galloway, whom we visited after leaving Lee Cox’s home. He was forty-two years old. He and his wife, Sharon, were both Boston firefighters. They had a three-year-old daughter. He had pancreatic cancer, which had spread; his upper abdomen was now solid with tumor. During the past few months, the pain had often become unbearable, and he was admitted to the hospital several times for pain crises. At his most recent admission, about a week earlier, it was found that the tumor had perforated his intestine. There wasn’t even a temporary fix for this problem. The medical team started him on intravenous nutrition and offered him a choice between going to the intensive care unit and going home with hospice. He chose to go home.

“I wish we’d gotten involved sooner,” Creed told me. When she and the hospice’s supervising doctor, JoAnne Nowak, evaluated Galloway upon his arrival at home, he appeared to have only a few days left. His eyes were hollow. His breathing was labored. Fluid swelled his entire lower body to the point that his skin blistered and wept. He was almost delirious with abdominal pain.

They got to work. They set up a pain pump with a button that let him dispense higher doses of narcotic than he had been allowed. They arranged for an electric hospital bed, so that he could sleep with his back raised. They also taught Sharon how to keep Dave clean, protect his skin from breakdown, and handle the crises to come. Creed told me that part of her job is to take the measure of a patient’s family, and Sharon struck her as unusually capable. She was determined to take care of her husband to the end, and perhaps because she was a firefighter, she had the resilience and the competence to do so. She did not want to hire a private-duty nurse. She handled everything, from the IV lines and the bed linens to orchestrating family members to lend a hand when she needed help.

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 overintimacy. 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.