For some of health care’s heaviest users, problems start with early trauma

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June 25, 2015

The idea that a very small number of patients account for a huge amount of overall health care spending isn’t new. The terms “super-utilizers” and “hot spotting” have been common vocabulary among health journalists ever since Atul Gawande wrote about Dr. Jeffrey Brenner’s work in Camden, New Jersey to improve care and cut spending among that city’s sickest residents in a now classic 2011 piece in The New Yorker.

But as health reform has increasingly focused on curbing rising health costs, health care super-users have found themselves firmly in the policy crosshairs. Pilot projects and initiatives abound. That’s largely because, as almost every news story points out, these patients are expensive in the extreme. Estimates vary, but the common formulation is that the top 5 percent of patients account for 50 to 60 percent of total health care spending.

Policy wonks might see those figures as ripe for pruning, but as reporter Dan Gorenstein powerfully illustrates in a superb series airing this week on public radio’s Marketplace, improving health and cutting costs among such patients is incredibly hard work. (Gorenstein was a 2014 USC Annenberg National Health Journalism Fellow, and a grant from the Fellowship's Dennis A. Hunt Fund for Health Journalism underwrote the reporting of his series.) Hard-won gains are often negligible, or quickly reversed. Gorenstein quotes Harvard’s Dr. Ashish Jha, who throws a bucket of cold water on the “triumphalists” who think that scaling up social services and outreach will curb spending and solve the problem of “frequent fliers”:

“There are almost no interventions that we know of that improve health and save money,” says Jha. “There are a couple of things that we do know. Vaccinations are probably the No. 1 thing. Once you get beyond that, it starts to get pretty tough.”

Jha says what makes this work tough is that patients each have their own costly web of issues and illnesses that can’t be resolved with a one-size-fits-all solution like a vaccine.

The “web” metaphor, with its sticky suggestiveness, seems apt. As anyone familiar with therapy can relate, changing behaviors is tough in the best of circumstances. When patients are dealing with multiple chronic conditions, poverty, no transportation, lousy food options and a history of addiction, to cite a few common denominators, the odds can be daunting.

And providers are still unraveling the complex mix of medical and behavioral factors that lead patients to show up repeatedly in the emergency room. It’s intuitive to think that chronic medical issues are leading repeat patients to cycle through the ER and that regular primary care would prevent such visits and break the cycle. But it’s not always so straightforward. Even when patients have primary care doctors, they might still show up routinely in the ER.

Consider the example of Northern California’s Humboldt County, which wrapped up a pilot program last year that worked intensively with a small group of super-utilizers to better understand the forces that keeps them cycling through the health care system.

“We did a two-year methodical look at what systems were contributing to folks using the emergency department,” explained Rosemary Den Ouden, chief operating officer of the Humboldt Independent Practice Association, in a recent interview. After identifying the top 50 ER users at Eureka’s St. Joseph Hospital in 2011, the project enrolled 30 of them in a pilot program that focused on coordinating care among multiple providers, with teams meeting regularly to discuss their care. Patients were also paired with nurse case managers who devoted hours to understanding their care needs and life challenges. And the Care Transitions Program worked to ensure that patients discharged from the ER didn’t end up boomeranging right back.

Initially, doctors and nurses thought most of patients’ problems were medical in nature, said Den Ouden. “At first blush, it seemed they had real medical issues and were using the ER appropriately for medical issues.” That perception changed as the project teams delved deeper.

“It quickly became clear that these patients not only had mental health and substance abuse issues, but this issue of early life trauma started emerging,” said Den Ouden, adding that “the vast majority” of the program’s 30 super-utilizers had early life trauma.

While it’s impossible to draw any firm conclusions from such a small sample, the larger link between trauma and heavy ER use is overwhelmingly familiar to those who work with these patients. Marketplace’s Gorenstein quotes social worker Lisa Pearlstein, who works with health care super-users in Portland, Oregon:

We could do everything and still people are going to struggle. It’s just poverty is so profound. Trauma is so profound.

Back in Humboldt, Den Ouden says doctors and nurses are incorporating childhood trauma assessments and bringing in training from experts in trauma-informed care to help staff better care for these patients. But there’s no firm playbook, as others have pointed out. Researchers are still figuring out how to relieve the decades of stress, anxiety and dysfunction that often ensue in the wake of early childhood trauma.

As Den Ouden put it, “Trauma-informed care is really new information for most of the medical community, in my experience.”

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[Photo by Aaron Guy Leroux via Flickr.]