Dr. Angelo Volandes is making a film that he believes will change the way you die. The studio is his living room in Newton, Massachusetts, a suburb of Boston; the control panel is his laptop; the camera crew is a 24-year-old guy named Jake; the star is his wife, Aretha Delight Davis. Volandes, a thickening mesomorph with straight brown hair that is graying at his temples, is wearing a T-shirt and shorts and looks like he belongs at a football game. Davis, a beautiful woman of Guyanese extraction with richly braided hair, is dressed in a white lab coat over a black shirt and stands before a plain gray backdrop.
"Remember: always slow," Volandes says.
"Sure, hon," Davis says, annoyed. She has done this many times.
Volandes claps to sync the sound. "Take one: Goals of Care, Dementia."
You are seeing this video because you are making medical decisions for a person with advanced dementia. Davis intones the words in a calm, uninflected voice. I'll show you a video of a person with advanced dementia. Then you will see images to help you understand the three options for their medical care.
Her narration will be woven into a 10-minute film. The words I'm hearing will accompany footage of an elderly woman in a wheelchair. The woman is coiffed and dressed in her Sunday finest, wearing pearls and makeup for her film appearance, but her face is vacant and her mouth is frozen in the rictus of a permanent O.
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 wrongfulcare. 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.)
What should have taken place was what is known in the medical profession as The Conversation. The momentum of medical maximalism should have slowed long enough for a doctor or a social worker to sit down with him and me to explain, patiently and in plain English, his condition and his treatment options, to learn what his goals were for the time he had left, and to establish how much and what kind of treatment he really desired. Alas, evidence shows that The Conversation happens much less regularly than it should, and that, when it does happen, information is typically presented in a brisk, jargony way that patients and families don't really understand. Many doctors don't make time for The Conversation, or aren't good at conducting it (they're not trained or rewarded for doing so), or worry their patients can't handle it.
This is a problem, because the assumption that doctors know what their patients want turns out to be wrong: when doctors try to predict the goals and preferences of their patients, they are "highly inaccurate," according to one summary of the research, published by Benjamin Moulton and Jaime S. King inThe Journal of Law, Medicine & Ethics. Patients are "routinely asked to make decisions about treatment choices in the face of what can only be described as avoidable ignorance," Moulton and King write. "In the absence of complete information, individuals frequently opt for procedures they would not otherwise choose."
Though no one knows for sure, unwanted treatment seems especially common near the end of life. A few years ago, at age 94, a friend of mine's father was hospitalized with internal bleeding and kidney failure. Instead of facing reality (he died within days), the hospital tried to get authorization to remove his colon and put him on dialysis. Even physicians tell me they have difficulty holding back the kind of mindlessly aggressive treatment that one doctor I spoke with calls "the war on death." Matt Handley, a doctor and an executive with Group Health Cooperative, a big health system in Washington state, described his father-in-law's experience as a "classic example of overmedicalization." There was no Conversation. "He went to the ICU for no medical reason," Handley says. "No one talked to him about the fact that he was going to die, even though outside the room, clinicians, when asked, would say 'Oh, yes, he's dying.' "
"Sometimes you block the near exits, and all you've got left is a far exit, which is not a dignified and comfortable death," Albert Mulley, a physician and the director of the Dartmouth Center for Health Care Delivery Science, told me recently. As we talked, it emerged that he, too, had had to fend off the medical system when his father died at age 93. "Even though I spent my whole career doing this," he said, "when I was trying to assure as good a death as I could for my dad, I found it wasn't easy."
If it is this hard for doctors to navigate their parents' final days, imagine what many ordinary patients and their families face. "It's almost impossible for patients really to be in charge," says Joanne Lynn, a physician and the director of the nonprofit Altarum Center for Elder Care and Advanced Illness in Washington, D.C. "We enforce a kind of learned helplessness, especially in hospitals." I asked her how much unwanted treatment gets administered. She couldn't come up with a figure—no one can—but she said, "It's huge, however you measure it. Especially when people get very, very sick."
Unwanted treatment is a particularly confounding problem because it is not a product of malevolence but a by-product of two strengths of American medical culture: the system's determination to save lives, and its technological virtuosity. Change will need to be consonant with that culture. "You have to be comfortable working at the margins of the power structure within medicine, and particularly within academic medicine," Mulley told me. You need a disrupter, but one who can speak the language of medicine and meet the system on its own terms.
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http://www.theatlantic.com/magazine/archive/2013/05/how-not-to-die/309277/?single_page=true
