Being Mortal (21 page)

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 along that long tail. And survive 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 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 out how to fix her.

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. The problem 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 is 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. 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. Fix Something. Is there any way out of this?

There’s a school of thought that says the problem is the absence of market forces. If terminal patients—rather than insurance companies or the government—had to pay the added costs for the treatments they chose instead of hospice, they would take the trade-offs into account more. Terminal cancer patients wouldn’t pay $80,000 for drugs, and end-stage heart failure patients wouldn’t pay $50,000 dollars for defibrillators offering at best a few months extra survival. But this argument ignores an important factor: the people who opt for these treatments aren’t thinking a few added months. They’re thinking years. They’re thinking they’re getting at least that lottery ticket’s chance that their disease might not even be a problem anymore. Moreover, if there’s anything we want to buy in the free market or obtain from our government taxes, it is assurance that, when we find ourselves in need of these options, we won’t have to worry about the costs.

This is why the R word—“rationing”—remains such a potent charge. There is broad unease with the circumstances we’ve found ourselves in but fear of discussing the specifics. For the only seeming alternative to a market solution is outright rationing—death panels, as some have charged. In the 1990s, insurance companies attempted to challenge the treatment decisions of doctors and patients in cases of terminal illness, but the attempts backfired and one case in particular pretty much put an end to strategy—
the case of Nelene Fox.

Fox was from Temecula, California, and was diagnosed with metastatic breast cancer in 1991, when she was thirty-eight years old. Surgery and conventional chemotherapy failed, and the cancer spread to her bone marrow. The disease was terminal. Doctors at the University of Southern California offered her a radical but seemingly promising new treatment—high-dose chemotherapy with bone marrow transplantation. To Fox, it was her one chance of cure.

Her insurer, Health Net, denied her request for coverage of the costs, arguing that it was an experimental treatment whose benefits were unproven and that it was therefore excluded under the terms of her policy. The insurer pressed her to get a second opinion from an independent medical center. Fox refused—who were they to tell her to get another opinion? Her life was at stake. Raising $212,000 through charitable donations, she paid the costs of therapy herself, but it was delayed. She died eight months after the treatment. Her husband sued Health Net for bad faith, breach of contract, intentional infliction of emotional damage, and punitive damages and won. The jury awarded her estate $89 million. The HMO executives were branded killers.
Ten states enacted laws requiring insurers to pay for bone marrow transplantation for breast cancer.

Never mind that Health Net was right. Research ultimately showed the treatment to have no benefit for breast cancer patients and to actually worsen their lives. But the jury verdict shook the American insurance industry. Raising questions about doctors’ and patients’ treatment decisions in terminal illness was judged political suicide.

In 2004, executives at another insurance company,
Aetna, decided to try a different approach. Instead of reducing aggressive treatment options for their terminally ill policyholders, they decided to try increasing hospice options. Aetna had noted that
only a minority of patients ever halted efforts at curative treatment and enrolled in hospice. Even when they did, it was usually not until the very end. So the company decided to experiment: policyholders with a life expectancy of less than a year were allowed to receive hospice services without having to forgo other treatments. A patient like Sara Monopoli could continue to try chemotherapy and radiation and go to the hospital when she wished, but she could 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 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.

The result 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 seriously ill patients someone experienced
and knowledgeable to talk to about their daily concerns. Somehow that was enough—just talking.

The explanation would seem to strain 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 have discussions were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive care unit. Most of them enrolled in hospice. They suffered less, were physically more capable, and were better able, for a longer period, to interact with others. In addition, six months after these patients died, their family members were markedly 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.

A landmark 2010 study from the Massachusetts General Hospital had even more startling findings. The researchers randomly assigned 151 patients with stage IV lung cancer, like Sara’s, to one of two possible approaches to treatment. Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients, and to see one, no determination of whether they are dying or not is required. If a person has serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives
—and they lived
25 percent longer
. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.

Patients entering hospice have had no less surprising results. Like many other people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But multiple studies find otherwise.
In one, researchers followed 4,493 Medicare patients with either terminal cancer or end-stage congestive heart failure. For the patients with breast cancer, prostate cancer, or colon cancer, the researchers found no difference in survival time between those who went into hospice and those who didn’t. And curiously, for some conditions, hospice care seemed to extend survival. Those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.

CAN MERE DISCUSSIONS
achieve such effects? Consider the case of La Crosse, Wisconsin. Its elderly residents have unusually low end-of-life hospital costs. During their last six months, according to Medicare data, they spend half as many days in the hospital as the national average, and there’s no sign that doctors or patients are halting care prematurely. Despite average rates of obesity and smoking, their life expectancy outpaces the national mean by a year.

I spoke to Gregory Thompson, a critical care specialist at Gundersen Lutheran Hospital, while he was on ICU duty one
evening, and he ran through his list of patients with me. In most respects, the patients were like those found in any ICU—terribly sick and living through the most perilous days of their lives. There was a young woman with multiple organ failure from a devastating case of pneumonia, a man in his midsixties with a ruptured colon that had caused a rampaging infection and a heart attack. Yet these patients were completely different from those in the ICUs I’d worked in: none had a terminal disease; none battled the final stages of metastatic cancer or untreatable heart failure or dementia.