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.
*