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 of 2007, 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.
Recently 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. She had told her family on several occasions 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 didn't think that these were 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 Navelbine. 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 Harvard researcher 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 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 report 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 also 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?
My solution was to avoid the subject altogether. I told Sara that the thyroid cancer was slow-growing and treatable. The priority was her lung cancer, I said. Let's not hold up the treatment for that. We could monitor the thyroid cancer 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 tubes that created strange protuberances 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 m
et in January, she could move only slowly and uncomfortably. Her lower body had become swollen. 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 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 scheduled 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 she would be put on another experimental drug 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.
Gould was a naturalist and more inclined to notice the variation around the curve's middle point than the middle point itself. What the naturalist saw was remarkable variation. The patients were not clustered around the median survival but instead fanned out in both directions. Moreover, the curve was skewed to the right, with a long tail, however slender, of patients who lived many years longer than the eight-month median. This is where he found solace. He could imagine himself surviving far out in that long tail. And he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in 2002, at the age of sixty, from a lung cancer that was unrelated to his original disease.
"It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity," he wrote in his 1985 essay. "Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light."
I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What's wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that's vastly more probable. The trouble is that we've built our medical system and culture around the long tail. We've created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.
For Sara there would be no miraculous recovery, and, when the end approached, neither she nor her family was prepared. "I always wanted to respect her request to die peacefully at home," Rich later told me. "But I didn't believe we could make it happen. I didn't know how."
On the morning of Friday, February 22, three days before she was to start her new round of chemo, Rich awoke to find his wife sitting upright beside him, pitched forward on her arms, eyes wide, struggling for air. She was gray, breathing fast, her body heaving with each open-mouthed gasp. She looked as if she were drowning. He tried turning up the oxygen in her nasal tubing, but she got no better.
"I can't do this," she said, pausing between each word. "I'm scared."
He had no emergency kit in the refrigerator. No hospice nurse to call. And how was he to know whether this new development was fixable?
We'll go to the hospital, he told her. When he asked if they should drive, she shook her head, so he called 911 and told her mother, Dawn, who was in the next room, what was going on. A few minutes later, firemen swarmed up the stairs to her bedroom, sirens wailing outside. As they lifted Sara into the ambulance on a stretcher, Dawn came out in tears.
"We're going to get ahold of this," Rich told her. This was just another trip to the hospital, he said to himself. The doctors would figure this out.
At the hospital Sara was diagnosed with pneumonia. That troubled the family, because they thought they'd done everything to keep infection at bay. They'd washed hands scrupulously, limited visits by people with young children, even limited Sara's time with baby Vivian if she showed the slightest sign of a runny nose. But Sara's immune system and her ability to clear her lung secretions had been steadily weakened by the rounds of radiation and chemotherapy as well as by the cancer.
In another way, the diagnosis of pneumonia was reassuring, because it was just an infection. It could be treated. The medical team started Sara on intravenous antibiotics and high-flow oxygen through a mask. The family gathered at her bedside, hoping for the antibiotics to work. This could be reversible, they told one another. But that night and the next morning her breathing only grew more labored.
"I can't think of a single funny thing to say," Emily told Sara as their parents looked on.
"Neither can I," Sara murmured. Only later did the family realize that those were the last words they would ever hear from her. After that she began to drift in and out of consciousness. The medical team had only one option left: to put her on a ventilator. Sara was a fighter, right? And the next step for fighters was to escalate to intensive care.
This is a modern tragedy, replayed millions of times over. When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can't eat: there's always something. We want these choices. We don't want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn't mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?
In late 2004, executives at Aetna, the insurance company, started an experiment. They knew that only a small percentage of the terminally ill ever halted efforts at curative treatment and enrolled in hospice and that when they did, it was usually not until the very end. So Aetna decided to let a group of policyholders with a life expectancy of less than a year receive hospice services without forgoing other treatments. A patient like Sara Monopoli could continue to try chemotherapy and radiation and go to the hospital when she wished—but also have a hospice team at home focusing on what she needed for the best possible life now and for that morning when she might wake up unable to breathe. A two-year study of this "concurrent care" program found that enrolled patients
were much more likely to use hospice: the figure leaped from 26 percent to 70 percent. That was no surprise, since they weren't forced to give up anything. The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and ICUs dropped by more than two-thirds. Overall costs fell by almost a quarter.
This was stunning and puzzling: it wasn't obvious what made the approach work. Aetna ran a more modest concurrent-care program for a broader group of terminally ill patients. For these patients the traditional hospice rules applied—in order to qualify for home hospice, they had to give up attempts at curative treatment. But either way, they received phone calls from palliative-care nurses who offered to check in regularly and help them find services for anything from pain control to making out a living will. For these patients, too, hospice enrollment jumped to 70 percent, and their use of hospital services dropped sharply. Among elderly patients, use of intensive-care units fell by more than 85 percent. Satisfaction scores went way up. What was going on here? The program's leaders had the impression that they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough—just talking.
The explanation strains credibility, but evidence for it has grown in recent years. Two-thirds of the terminal-cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died, their family members were much less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.