What Doctors Know About How Bad It Is, and Won’t Say

So his family thought he might rebound. But when his son, Jerry, asked the rotating flotilla of neurologists what was likely to happen — would his father survive? go home? — no one really wanted to address his questions.

“When you pushed them, they said, ‘We can’t say anything with surety,’” Mr. Kohn said.

“I kept saying, ‘I’m only asking for your opinion, not a guarantee. I’d really like to know what your 30 years of medical knowledge and experience tell you.’ Most of them would just clam up.”

We’ve known for years that doctors hesitate or even decline to discuss a poor prognosis with patients and their families. They fear that bad news will dash hopes; they don’t want to appear to be giving up. Often, their training hasn’t prepared them for sensitive conversations.

One researcher told me oncologists believe that if they fail to offer yet more chemotherapy, even when that’s futile, patients will leave, seeking another doctor who will.

Yet the supposed cornerstone of contemporary medicine — patients making informed decisions about their care — depends on their understanding their situation, their life expectancy, their probable quality of life, the pros and cons of any proposed treatment. (Or, when patients themselves are incapacitated, it depends on their surrogate decision-makers’ understanding.)

Experts have repeatedly urged doctors to talk about the elephants in the room, especially at the end of life. But two recent studies show how achingly slow progress has been.

Dr. Holly Prigerson, the director of the Center for Research on End-of-Life Care at Weill Cornell Medicine, and her colleagues interviewed 178 patients at cancer centers across the country.

All had lethal cancers that had progressed despite chemotherapy; their oncologists estimated their life expectancy at less than six months. “These patients were all dying, and everyone treating them was well aware of it,” Dr. Prigerson said. continua a leggere