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Unraveling the Mysteries and Extensive Needs of Emergency Department "Superutilizers"

Tony Hagen
When 5% of Medicaid recipients account for 54% of spending, cost is just the beginning of the problem.
After his heart attack in 2009, Troy Johnson, who suffers from type 2 diabetes mellitus (T2DM), came to frequent the hospitals in and around Camden, NJ. At 345 pounds, the 51-year-old maintenance worker had a history of not eating properly or exercising regularly; he later compounded his medical problems by stepping on a nail, which led to an infection that doctors were unable to bring under control.

Johnson had no health insurance. He took whatever medication he could afford sparingly to make it last, and he frequently ran out of bandages for his foot wound. The only way he could get any medical attention was to show up in the emergency department (ED), so he did. Records show that he visited often, about once every 3 months for up to 3 years.

A term has been coined for Johnson and patients like him: the “superutilizer.”1 Pioneering work by Jeffrey Brenner, MD, founder and CEO of the Camden Coalition of Healthcare Providers and a 2013 MacArthur Fellow,2,3 found ways to identify patients like Johnson, and then to reduce the frequency of their ED visits. It requires addressing not only their chronic conditions but also their inability to self-manage their health needs. For patients like Johnson, diabetes is a frequent conspirator in the struggle, but it’s not the only one.

Several years ago, Brenner’s work with superutilizers caught the attention of CMS, because these patients account for an oversized share of Medicaid spending. A July 2013 informational bulletin from Cindy Mann, director of CMS’ Center for Medicaid and Children’s Health Insurance Program Services, cites the uneven spending distribution: statistics at that time showed 5% of beneciaries accounted for 54% of spending, with the top 1% of the beneciaries accounting for 25% of the spending. Among this 1%, 83% have at least 3 chronic conditions, and 60% have 5 or more such conditions.1

And yet, this utilization is not surprising. As Mann wrote, superutilizers are those with “complex, unaddressed health issues and a history of frequent encounters with healthcare providers.”1 Their healthcare is highly uncoordinated and rarely occurs in the appropriate setting. Connecting these patients with primary care doctors, and getting them to seek preventive services—which will address their problems more effectively and at a lower cost—is a major objective of the Affordable Care Act (ACA). In that same 2013 memo, Mann noted that the Center for Medicare and Medicaid Innovation had awarded Cooper University Hospital in Camden $2.8 million “to expand the Camden Coalition superutilizer program to serve over 1200 patients, with an estimated 3-year savings of $6.2 million.”1

For all his encounters with the healthcare system, Johnson’s story got worse before it got better. He lost more than 70 pounds, but his foot eventually had to be amputated. Along the way he developed eye and bladder problems, and his ability to care for himself diminished. ”I got in a stupor,” Johnson says. “I didn’t have a job, I was just sitting. Everything was coming down on me–God was picking on me.”

These “frequent fliers,” as they are also known, come in all shapes and sizes. As the CMS statistics show, they frequently suffer from multiple chronic conditions, which can include substance abuse or mental health problems. Many have compounding social obstacles such as inadequate housing or lack of transportation. Many do not have health insurance, and even those who have obtained it for the rst time under the ACA may be unaccustomed to seeking care outside of the ED setting; many must be taught how to use insurance and find a primary care physician


Some, in fact, seek out the ED; to them, it is like an oasis of warmth and attention. Doctors and nurses come to know them over time, and stable personal relationships develop, in contrast to the turmoil they may endure on the streets or at home, says Corey Waller, MD, director of the Spectrum Health Medical Group Center for Integrative Medicine in Michigan. The center uses a health team approach to address the needs of superutilizers in the hospital network.

“What happens is, you get patients who show up to the ED and they get food and something warm to drink, and an extra blanket and get treated almost like family; despite the ongoing trauma that the medical system levies on them with feelings of guilt and blame and unnecessary testing, it still is the only place that’s safe for them,” Waller said.

Spectrum Health’s system of 11 hospitals in Michigan’s Grand Rapids area have a 70% market share and until recently saw 1000 superutilizers visiting EDs 10 times or more each year, with each patient costing the system $55,000 on average, for a total of $55 million a year. With the creation of the Center for Integrative Medicine, efforts were made to work more closely with these high-cost patients, and their numbers dropped by half. “For some of our patients, we identify their issues, we stabilize them and get them into primary care; other ones have so many levels of complication that nobody feels comfortable with them, and so they stay within our clinic walls, and we see them as chronic patients,” he said.


According to Brenner, addressing these patients successfully is as much a matter of nding them appropriate medical care as it is about reeducating them and attending to their complex psychological needs. The Camden Coalition of Healthcare Providers brings an array of medical resources and practical expertise to bear on the problem in this poverty-stricken New Jersey city. The coalition successfully worked with Johnson, the T2DM foot patient, to help him overcome transportation problems and map out a program of medical care that would keep him out of the ED. The coalition remains active with a patient for 90 to 120 days, teaching the patient how to function more independently. “The vast majority of people never go to the hospital except to be born and maybe once or twice in their lives,” says Brenner.

“Then there’s the 1% of the population that consumes almost 30% of the costs, because they go back to the hospital a lot. They’re very heterogeneous. If I said to you that all high utilizers are homeless, that would be wrong. If I said that all homeless are high utilizers, I’d be wrong. If I said that all high utilizers are diabetic, I’d be wrong. It’s the combination of all of these things.”

Indeed, a 2013 superutilizer summit co-sponsored by the Center for Health Care Strategies, a national nonprot, identied diabetes, mental health, substance abuse, and cardiovascular problems as among the most frequent issues among recurring ED users. Addressing those factors can be a handful for doctors or other healthcare providers, but for superutilizers acting on their own it’s almost impossible.4

“Let’s imagine you were just diabetic. That’s going to have a big impact on your life,” Brenner said. “But if I add hypertension and cholesterol, now you’re taking 7 pills a day, along with doctor visits. Let me throw in glaucoma, and now I’ll throw in doctor visits every month. Now let’s throw on top of that your hip’s bothering you, you can’t get around very well, and you’re using a cane, and let’s throw on top of that lack of family support and maybe you’re living on Social Security. Well, the whole thing is toppling over.”


Brenner, Waller, and others working with high utilizers say that while T2DM and comorbidities certainly complicate the process of getting this population into effective treatment corridors, which would improve their lives while lowering the cost of care, the root of their problems are myriad traumas that many of these patients suffered in early life. Such problems contribute to both ineffective self-care and to self-destructive behavior, both of which must be addressed, providers say, before anything else can be fixed.

“The thing we have found all over the country is that the really extreme, often intractable, patients often have very high levels of early life trauma—the death of a parent, physical abuse, sexual abuse, one parent hitting another,” Brenner shared. “It’s had a very foundational impact on them. They don’t form trusting relationships very easily. Their reaction to stress is often quite different. They’re very disproportionally represented among frequently hospitalized patients.” Waller says 90% or more of the superutilizers in his system admit to early life  trauma, which he calls “pretty disturbing.”

“Trauma leads to predictable behaviors—chronic anxiety, desire to escape, impulse control issues—somebody who needs an answer right now,” Waller said. “We nd that the only one that is consistently there for them is the healthcare system, not their neighbors, not their church, not their family, not their signicant other, not their kids. When we asked them ‘Where do you go if you need help with anything’? it’s the hospital, because they know that it’s there, and they know that people will be nice, and they know that they’re not going to be at risk.” As a result, much of the work done by specialists at the programs run by Brenner and Waller is designed to address the psychological barriers to changing lifestyles and following treatment plans.


There are other classes of the superutilizer. In Alaska, Medicaid Division of Health Care Services director Margaret Brodie encounters young mothers who bring their children to the ED because they overreact to medical problems or don’t have other alternatives, while other children turn up repeatedly after suffering from abuse. There are “pre-superutilizers” who come in the form of unborn babies whose mothers have substance abuse disorders, says Waller. Right out of the womb, these babies end up in neonatal intensive care units at a cost of more than $5000 a day. At Spectrum Health, treatment of this group starts during pregnancy with behavioral therapy for the mother and identication of social barriers to successful behavior.

In the University of Florida health system in Gainesville, hospital administrators found that patients were ocking to the ED from surrounding counties because effective charity care was unavailable. The 2 clinics in town accepted ony in-county residents and limited the number of cases each month. The solution, health workers said, was to establish a clinic alongside the ED that would address this supplementary need for care as well as the high utilizer population. “People come to our area from other areas because they cannot get help,” says Jacqui Pinkney, MSW, a clinical social worker at the UF Health Shands Care One Clinic in Gainesville. “We see that a lot because there are a lot of small counties that are between us and Tampa. I’ve had patients say that ‘I moved to this area because I couldn’t get help for this problem.’”

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