Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. A 2011 study, for instance, found that medical spending for a breast cancer patient in the first year of diagnosis averaged an estimated $28,000, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy. Costs fell after that to about $2,000 a year. For a patient whose cancer proves fatal, though, the cost curve is U-shaped, rising toward the end—to an average of $94,000 during the last year of life with a metastatic breast cancer. Our medical system is excellent at trying to stave off death with $12,000-a-month chemotherapy, $4,000-a-day intensive care, $7,000-an-hour surgery. But, ultimately, death comes, and few are good at knowing when to stop.
While seeing a patient in an intensive care unit at my hospital, I stopped to talk with the critical care physician on duty, someone I’d known since college. “I’m running a warehouse for the dying,” she said bleakly. Of the ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-old woman at the end of her life, with irreversible congestive heart failure, who was in the ICU for the second time in three weeks, drugged to oblivion and tubed in most natural orifices as well as a few artificial ones. Or the seventy-year-old with a cancer that had metastasized to her lungs and bone and a fungal pneumonia that arises only in the final phase of the illness. She had chosen to forgo treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics. Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheostomy, and she had mentioned that she didn’t want to die that way. But her children couldn’t let her go and asked to proceed with the placement of various devices: a permanent tracheostomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness.
Almost all these patients had known, for some time, that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the final stage.
“We are having more conversation now about what patients want for the end of their life, by far, than they have had in all their lives to this point,” my friend said. “The problem is that’s way too late.”
In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an ICU because of terminal illness is for most people a kind of failure. You lie attached to a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said good-bye or “It’s okay” or “I’m sorry” or “I love you.”
People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The question therefore is not how we can afford this system’s expense. It is how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives.
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