The Hardest Conversation: Talking About Death

A troubling number of terminally ill cancer patients don’t understand that chemotherapy won’t cure them. How can oncologists talk so that patients will listen?
Publish date:
Social count:
A troubling number of terminally ill cancer patients don’t understand that chemotherapy won’t cure them. How can oncologists talk so that patients will listen?

There is a pandemic in the United States that no single-payer health care system, marvel of modern technology, nor homeopathic tincture can remedy. Medicare doesn’t cover it, and no blockbuster drug will treat it. Call it a “silent crisis.” Symptoms include, chiefly, poor communication between doctor and patient, false hope, and a willingness to move heaven and earth in the final months of life to find a cure where there is none. Prognosis is death without dignity.

That life is an ultimately fatal condition is inescapable—death is perhaps the only truly universal human experience. So why do we find it an impossible topic?

A study in this week’s New England Journal of Medicine illustrates how intractable the problem has become. According to lead author Jane C. Weeks of Harvard’s Dana-Farber Cancer Institute, 69 percent of lung cancer patients and 81 percent of colorectal cancer patients, “did not report understanding that chemotherapy was not at all likely to cure their cancer.”

The study population was comprised of 1,200 stage IV cancer patients—meaning the tumor had “metastasized” and spread throughout the body, and all but ensuring that the disease was terminal. As the authors note, the “survival benefit” of chemotherapy at this stage “is usually measured in weeks or months,” and comes with considerable toxic side-effects. They continue, “There is no uncertainty about whether chemotherapy offers any prospect of a cure”—which is to say, it most certainly does not—and yet many patients choose to undergo it anyway.

In the Weeks study, patients were interviewed at least four months after diagnosis, having already opted for chemotherapy. When the authors examined the responses, they found that education level didn’t correlate to a misplaced belief in chemo’s curative power. Race did, with blacks and Hispanics more likely to hold inaccurate expectations. “Paradoxically,” they write, “patients who reported higher scores for physician communication”—those one would expect to have the clearest understanding of their prognoses—“were also at higher risk for inaccurate expectations.”

The authors point to previous research showing that “patients with advanced cancer would accept toxic treatment for even a 1 percent chance of cure but would be unwilling to accept the same treatment for a substantial increase in life expectancy without cure.” Yet Weeks found that 96 percent of newly-diagnosed patients who discussed chemotherapy with their doctors chose to undergo it. How truly “informed” was their consent to treatment? Did oncologists not make clear the limited efficacy of chemo on stage IV cancer—or were patients simply not hearing it?

In an editorial that accompanies the study, oncologist Thomas Smith and molecular biologist Dan Longo observe that self-deception can be a “valuable personal coping tool.” But when it comes to end-of-life planning, self-deception can be costly, in terms of dollars, physical wellness, and emotional health. And patients aren’t to blame alone.

“It is not easy to tell patients that they are going to die,” Smith and Longo write, “and most of us choose not to do it. This may explain why two months before death, half of all patients with lung cancer have not heard any of their doctors use the word ‘hospice.’ ” If oncologists were to bring up palliative care sooner, and offer end-of-life counseling to families, patients would likely forgo chemo, live just as long, and incur a fraction of the hospital costs in the process. A full quarter of Medicare spending occurs in the last year of life, the authors note, which is no small part of why the system is going broke.

A breakthrough in communication would do far more to treat our fear-of-death epidemic than any revolution in technology or drugs. But it’s that fear that makes us human, and it’s not so easily shook.