Most of us have heard about “super-users” – patients who are constantly in and out of the hospital, running up large bills. Most have multiple chronic diseases, are poor, and often have mental illness or substance abuse problems. Most live alone, and some are homeless.
Four communities – Lehigh Valley, Pa.; Kansas City, Mo.; San Diego and Aurora, Colo. – have received grants under the Affordable Care Act to tackle the super-user problem. (Other non-ACA-funded initiatives are also underway). Investigative reporter Tim Darragh, formerly of The Morning Call in Allentown, Pa., spent a year tracking the grant in the Lehigh Valley. The super-user innovation grants, which were issued in 2012, provide $14.3 million and (at least for Lehigh) expire in mid-2015.
Darragh, now a reporter at The Star-Ledger in New Jersey, looked at a broad range of issues in the project. He also was able to weave narrative into the policy reporting. The Morning Call recently published five pieces:
One gives an overview of the program, which tried to adapt some of Camden, N.J., physician Jeffrey Brenner’s “hot-spotting” ideas (see this New Yorker profile of Brenner) to a community quite unlike Camden. Darragh’s overview piece also introduces some of the patients who are participating, some of whom allowed personal details to be used.
Alvin Bolster, for instance, is in his 70s and, Darragh writes, “has 23 serious health issues, including chronic obstructive pulmonary disease, edema, obesity, sleep apnea, atrial fibrillation, internal bleeding, kidney disease, congestive heart failure and schizoaffective disorder.” He’s in and out of the hospital a lot, getting “multiple X-rays, CT scans, electrocardiograms, blood tests, endoscopic procedures, anesthesia, breathing treatments” and on and on. It costs a lot and Bolster just doesn’t pay the part that Medicare doesn’t cover.
A second article focuses on transportation obstacles, such as getting patient to and from appointments. Some of the obstacles are on the patient side, but there are daunting logistical challenges. (What happens when the ride is lined up but the doctor runs late … and the van has to go get another waiting passenger?) Rigid federal rules also hamper getting patients where they need to be when they need to be there. Missing a doctor’s appointment – or a dialysis session – may trigger another high-cost hospitalization.
A third story looks at the social isolation that these patients face, and how to use parish nurses, social workers and community organizations to build connections that improve well-being. Such social support, the article explains, may contribute to better patient understanding and compliance.
A fourth piece looks at some of the other efforts, particularly in the Pennsylvania area, by foundations and health organizations to address hot spots and super users, and a fifth story explores how one ambulance company has flipped its business model – and it now can get paid not just for taking a patient on an expensive ride for another expensive ER visit, but for taking care of the patient at home, avoiding both the ambulance ride and the hospital visit. (This would be really interesting to explore in other communities.)
The Lehigh project has not yet lived up to expectation or hopes. But the Allentown team, “a small partnership of health-care workers, case managers, social workers, parish nurses, clergy and community exchange members” has learned a lot. They hope to see more concrete results in these final months, so that they can find the money to go on and build on the lessons learned.
Obstacles the project has faced (Darragh’s series shows how they overlap) include:
- Difficulty in enrolling patients. They have 86, and they expected around 475.
- Difficulty in getting the area’s hospitals to share their data
- Ongoing transportation obstacles.
- A new and still-growing awareness that health care providers have to think differently and less judgmentally about these patients, their mental health, and their “compliance” challenges. These health and social service providers – no matter how well intentioned – are also part of a broken system that needs change.
- It would be interesting to check back in six months and see whether they’ve been able to overcome the problems, and push ahead. And there are many programs like this, some on a smaller scale, across the country to explore.
Darragh completed his project with support from a National Health Journalism Fellowship, a program of the University of Southern California’s Annenberg School of Journalism.
(Editor’s note: Updated to reflect Darragh’s new job at The Star-Ledger.)
