May 3, 2013

How Not to Die: The videos of Angelo Volande Angelo Volandes's low-tech, high-empathy plan to revolutionize end-of-life care

He decided to go to medical school, not just to cure people but “to learn how people suffer and what the implications of dying and suffering and understanding that experience are like.” Halfway through med school at Yale, on the recommendation of a doctor he met one day at the gym, he took a year off to study documentary filmmaking, another of his interests. At the time, it seemed a digression.

That man is Angelo Volande who may very well revolutionize the way you die.

Unless you are a doctor or nurse, you don't have much experience in medical end-of-life decisions.    So when it comes to medical decisions that must be made for a family member who is very ill and probably dying, most people would choose the medical care that is most life-prolonging. Of course, I want my mother to be feed even if it means a feeding tube.

But doctors who have lots of experience in such end-of-life decisions choose quite differently.  They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care that they could want.  But, they choose not to have 'heroic' and aggressive treatments.  They chose comfort care and quality of life.  As a result, they are far more likely to have a gentle and serene death.

Angelo Volande is bringing videos to those who are making end-of-life medical decisions so they will know what doctors know.

How Not to Die  Angelo Volandes's low-tech, high-empathy plan to rend-of-life care.

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….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.”

I think he's right on the money with this.

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.
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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.

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The first film he made featured a patient with advanced dementia. It showed her inability to converse, move about, or feed herself. When Volandes finished the film, he ran a randomized clinical trial with a group of nine other doctors. All of their patients listened to a verbal description of advanced dementia, and some of them also watched the video. All were then asked whether they preferred life-prolonging care (which does everything possible to keep patients alive), limited care (an intermediate option), or comfort care (which aims to maximize comfort and relieve pain). The results were striking: patients who had seen the video were significantly more likely to choose comfort care than those who hadn’t seen it (86 percent versus 64 percent). Volandes published that study in 2009, following it a year later with an even more striking trial, this one showing a video to patients dying of cancer. Of those who saw it, more than 90 percent chose comfort care—versus 22 percent of those who received only verbal descriptions. The implications, to Volandes, were clear: “Videos communicate better than just a stand-alone conversation. And when people get good communication and understand what’s involved, many, if not most, tend not to want a lot of the aggressive stuff that they’re getting.”

Even now, after years of refinement, Volandes’s finished videos look deceptively unimpressive. They’re short, and they’re bland. But that, it turns out, is what is most impressive about them. Other videos describing treatment options—for, say, breast cancer or heart disease—can last upwards of 30 minutes. Volandes’s films, by contrast, average six or seven minutes. They are meant to be screened on iPads or laptops, amid the bustle of a clinic or hospital room.

They are also meant to be banal, a goal that requires a meticulous, if perverse, application of the filmmaker’s art. “Videos are an aesthetic medium; you an manipulate people’s perspective,” Volandes says. “I want to provide information without evoking visceral emotions.
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Routine use, however, is far, far away. According to Volandes, only a few dozen U.S. hospitals, out of more than 5,700, are using his videos
Posted by Jill Fallon at May 3, 2013 11:44 AM | Permalink