This woman lives in a nursing home and has advanced dementia. She’s seen here with her daughters. She has the typical features of advanced dementia …
Young in affect and appearance, Volandes, 41, is an assistant professor at Harvard Medical School; Davis, also an M.D., is doing her residency in internal medicine, also at Harvard. When I heard about Volandes’s work, I suspected he would be different from other doctors. I was not disappointed. He refuses to let me call him “Dr. Volandes,” for example. Formality impedes communication, he tells me, and “there’s nothing more essential to being a good doctor than your ability to communicate.” More important, he believes that his videos can disrupt the way the medical system handles late-life care, and that the system urgently needs disrupting.
“I think we’re probably the most subversive two doctors to the health system that you will meet today,” he says, a few hours before his shoot begins. “That has been told to me by other people.”
“You sound proud of that,” I say.
“I’m proud of that because it’s being an agent of change, and the more I see poor health care, or health care being delivered that puts patients and families through—”
“We torture people before they die,” Davis interjects, quietly.
Volandes chuckles at my surprise. “Remember, Jon is a reporter,” he tells her, not at all unhappy with her comment.
“My father, if he were sitting here, would be saying ‘Right on,’ ” I tell him.
Volandes nods. “Here’s the sad reality,” he says. “Physicians are good people. They want to do the right things. And yet all of us, behind closed doors, in the cafeteria, say, ‘Do you believe what we did to that patient? Do you believe what we put that patient through?’ Every single physician has stories. Not one. Lots of stories.
“In the health-care debate, we’ve heard a lot about useless care, wasteful care, futile care. What we”—Volandes indicates himself and Davis—“have been struggling with is unwanted care. That’s far more concerning. That’s not avoidable care. That’s wrongful care. I think that’s the most urgent issue facing America today, is people getting medical interventions that, if they were more informed, they would not want. It happens all the time.”
Unwanted treatment is American medicine’s dark continent. No one knows its extent, and few people want to talk about it. The U.S. medical system was built to treat anything that might be treatable, at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.
In 2009, my father was suffering from an advanced and untreatable neurological condition that would soon kill him. (I wrote about his decline in an article for this magazine in April 2010.) Eating, drinking, and walking were all difficult and dangerous for him. He ate, drank, and walked anyway, because doing his best to lead a normal life sustained his morale and slowed his decline. “Use it or lose it,” he often said. His strategy broke down calamitously when he agreed to be hospitalized for an MRI test. I can only liken his experience to an alien abduction. He was bundled into a bed, tied to tubes, and banned from walking without help or taking anything by mouth. No one asked him about what he wanted. After a few days, and a test that turned up nothing, he left the hospital no longer able to walk. Some weeks later, he managed to get back on his feet; unfortunately, by then he was only a few weeks from death. The episode had only one positive result. Disgusted and angry after his discharge from the hospital, my father turned to me and said, “I am never going back there.” (He never did.)