How Not to Die

Angelo Volandes's low-tech, high-empathy plan to revolutionize end-of-life care
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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 can manipulate people’s perspective,” Volandes says. “I want to provide information without evoking visceral emotions.” Any hint that he was appealing to sentiments like revulsion or fear to nudge patients toward a certain course of treatment would discredit his whole project, so Volandes does all he can to eliminate emotional cues. That is why he films advanced-dementia patients dressed and groomed to the nines. “I give them the nicest image,” Volandes told me. “If with the nicest image we show a huge effect, you can imagine what it would be like if they really saw the reality.”

Volandes has entrepreneurial OCD: the gift, and curse, of unswerving faith in a potentially world-changing idea.

The typical video begins with Davis explaining what the viewer is about to see, stating plainly facts that doctors are sometimes reluctant to mention. She says, for example: People with advanced dementia usually have had the disease for many years and have reached the last stage of dementia. They are nearing the end of life. The video cuts to a shot of a patient. Then Davis outlines the three levels of care, starting with the most aggressive. Over footage of CPR and mechanical ventilation, she explains that in most cases of advanced dementia, CPR does not work, and that patients on breathing machines are usually not aware of their surroundings and cannot eat or talk. Then she describes limited care and comfort care, again speaking bluntly about death. People who choose comfort care choose to avoid these procedures even though, without them, they might die. She concludes by recommending The Conversation.

It seems a minor thing, showing a short video. As, indeed, it will be, if it happens only occasionally. I didn’t get my head around the scale of Volandes’s ambition until I understood that he wants to make his videos ubiquitous. His intention is not only to provide clearer information but, more important, to trigger The Conversation as a matter of medical routine. “We’re saying, ‘You’re not doing your job if you are not having these conversations in a meaningful way with patients and their families,’ ” he tells me. “If every patient watched a video, there’s standardization in the process. That’s why I call it subversive. Very few things in medicine can change the culture like that.”

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. I spoke with physicians and a social worker at three health systems that are piloting them, and all were very enthusiastic about the results. Volandes is particularly hopeful about a collaboration with the Hawaii Medical Service Association, the state’s dominant health-insurance provider, which is piloting the videos in hospitals, nursing homes, and doctors’ offices. Officials say they hope to expand use statewide within three years. Right now, though, Volandes’s videos have a limited reach.

The problem is not his product but the peculiar nature of the market he wants to push it into. His innovation is inexpensive and low-tech, and might avert misunderstanding, prevent suffering, improve doctor-patient relationships, and, incidentally, save the health-care system a lot of money. He goes out of his way not to emphasize cost savings, partly because he sees himself as a patients’-rights advocate rather than a bean counter, and partly because it is so easy to demagogue the issue, as Sarah Palin did so mendaciously (and effectively) in 2009, when she denounced end-of-life-care planning as “death panels.” Anyone who questions medical maximalism risks being attacked for trying to kill grandma—all the more so if he mentions saving money. For all its talk of making the health-care system more rational and less expensive, the political system is still not ready for an honest discussion. And the medical system has its own ways of fighting back.

Volandes works on his videos ceaselessly. He has curtailed his medical practice and his teaching responsibilities, both of which he misses, and last year gave more than 70 speeches evangelizing for the video project. In an effort to batter the medical establishment into submission with the sheer weight of scientific evidence, he has conducted 13 clinical trials using videos to depict different diseases and situations, and he has seven more studies in the pipeline. He says he gets by on three or four hours of sleep a night. The project has taken over his house. Davis would like her living room back; there are floodlights and a big gray backdrop where her paintings should be.

Volandes thinks he can sustain this pace for perhaps five years—by which time he hopes to have revolutionized American medicine. Davis tries to dial back his expectations, but he resists. “Not when I have nurses and doctors use words like torture as often as they do,” he says. “In order to make a change, you’ve got to be ambitious. If not, then just publish and get your tenure and move on.”

During my visit, I realized that I had encountered Volandes’s type before, but in Silicon Valley. Volandes has entrepreneurial obsessive-compulsive disorder: the gift, and curse, of unswerving faith in a potentially world-changing idea.

It is not a huge exaggeration to say that obsessive entrepreneurs, from Cornelius Vanderbilt to Steve Jobs, made America great. It is also not a huge exaggeration to say that health care, more than any other nongovernmental sector, has made itself impervious to disruptive innovation. Medical training discourages entrepreneurship, embedded practice patterns marginalize it, bureaucrats in medical organizations and insurance companies recoil from it. And would-be disrupters are generally disconnected from patients, their ultimate customers: they have to take their innovations to physicians, who are notoriously change-averse, and then they must get the government—Medicare, first and foremost—to approve and pay for them. Imagine that Jeff Bezos, when he was starting Amazon, had needed to ask permission from bookstores and libraries.

Volandes, therefore, will fail. That is to say, he will fail if success means revolutionizing the doctor-patient relationship and making The Conversation ubiquitous within five years. Meanwhile, if the American health-care system does not learn how to harness the energy and ideas of people like Volandes, it will fail. Somewhere between those failures lies a path forward. We know medical culture can change for the better; it takes the treatment of pain much more seriously than it used to, for example, and it has embraced hospice care.

The best news about U.S. health care today is that a lot of reform-minded entrepreneurship is bubbling up from within. Volandes is not alone. So many patients and doctors and family members feel marginalized and bureaucratized and overwhelmed that some health systems and insurers, in spontaneous mini-rebellions, are starting to innovate, often on their own dime. I think of Dr. Brad Stuart of Sutter Health at Home, who is building a new late-life-care system that bridges the gap between hospital and hospice, allowing the very sick to receive more care at home; I think of Dr. Derek Raghavan of Carolinas HealthCare System’s Levine Cancer Institute, who is building a “cancer center without walls” that uses telemedicine and other tools to make state-of-the-art treatment available to patients, regardless of where they live. I think of Dr. Woody English of Providence Health and Services, who is 67 and wants to make a difference before he retires. At his instigation, Providence has begun using Volandes’s videos. “The changes will come locally,” English told me, “not nationally.” When I look at him and Volandes and the others, I see not only a test of whether the health-care system’s medical culture can change but also a test of whether its business culture can change—and that change may, in the end, be even more important.

The morning after the shoot, Volandes shows me some of the footage he plans to use. We watch a patient with advanced Alzheimer’s being fed through a tube that has been surgically inserted into her stomach. An attendant uses a big syringe to clear the tube, then attaches a bag of thick fluid. Over the footage, Davis’s voice will say, Often, people hope tube feeding will help the patient live longer. But tube feeding has not been shown to prolong or improve the quality of life in advanced dementia. Tube feeding also does not stop saliva or food from going down the wrong way.

Volandes is explaining to me that tube feeding is overused in elderly dementia patients, but my mind has floated back to 2009. My father’s disease, by then, had destroyed his ability to protect his airway when he swallowed; food, drink, and saliva ended up in his lungs. He coughed violently when he ate or drank. Doctors mentioned tube feeding as an option, and well-intentioned friends nudged us in that direction. But his friends had no real idea what tube feeding entailed, and neither did I, and neither did he.

“Let me ask you this,” Volandes says. “Suppose I’m having a conversation with you about whether your father would want this. And I saidfeeding tube,’ and you’re thinking to yourself, Food, yeah, I could give food to my mom or dad. We just want to make sure that regardless of the way the gastroenterologist is presenting the procedure, the patient’s loved ones know this is what we’re talking about.”

Not long before my father died, I asked a hospice nurse about tube feeding. He told me, with grim clarity: “I think that would be cruel.” I remember that nurse with gratitude, because he was right. But “that would be cruel” was not a substitute for The Conversation.


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Jonathan Rauch is a contributing editor of The Atlantic and National Journal and a senior fellow at the Brookings Institution.

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