Getting to know the sickest patients

In case you haven’t noticed, the Affordable Care Act has already started to shake the health care industry in profound ways. One example is that as hospitals face millions in penalties for readmissions, executives are zeroing in on some of their sickest and most expensive patients. It’s important enough that researchers across the country are trying to understand why some people with chronic diseases keep coming back to the hospital again and again, and why others don’t.

It is clear that these so-called super utilizers keep coming back to the hospital for any number of reasons. “They may not have access to a primary care doctor, they may not be able to get their medications, they also may just be lonely,” says Dr. Dawn Mautner, a family physician at Jefferson University Hospital in Philadelphia. 

Mautner says what we know about this group of patients comes primarily from insurance claims data. But that is not enough.

“Who they are is a bigger question than what kind of insurance they have and how many times they’ve been in the hospital. We still have a whole bunch of people who are not getting what they need,” she says.

So for the past two years -- in her effort to dig deeper -- Mautner has been in dozens of Camden homes scratching out 60, 90, and 120 minute interviews. And a pattern has emerged. People like Jackie Coleman,62, have stories of childhood trauma.

“I slept with a knife under my pillow at all times,” she says. Coleman made a point to confront the men who came into her house. “I used to tell them I will cut you from your ‘A’ to your ‘A.’ Those words for the first time came out of my mouth when I was seven,” she says.

The Christmas that Coleman was 8, her mother’s boyfriend threw a chair at Coleman’s mother. “All I saw was blood. Then I seen her go under the sink, and she got lye. And she threw it in his face. And all I could see was his face melting. He was screaming for me to call an ambulance. And I looked him right in his face and I said, ‘No. You hit my mother,’” says Coleman.

A growing body of research suggests chronic anxiety and trauma that comes with prolonged exposure to violence, hunger, and overall instability can not only affect mental health, but physical health too.

Some research shows that people like Coleman are more likely to have chronic conditions. She has four -- asthma, high blood pressure, arthritis and diabetes. Coleman says her childhood has made it hard to trust people, including her doctors.

“If you don’t trust the doctor, you are not going to be truthful. You are not going to tell them everything they need to know. You will tell them just enough to get some medicine, but not enough to get the right medicine,” she says.

According to the Centers for Medicare and Medicaid, 1 percent of all patients -- the super utilizers -- are responsible for 22 percent of all health spending. CMS’s Medicaid Medical Director Stephen Cha says there’s a lot at stake in understanding what drives these people. But it’s not easy.

“This is not a new observation -- understanding that a small percentage take up a large percentage of costs. And we’ve tried to think about this for a long, long time. Years and years,” says Cha.

It’s not clear that childhood trauma causes repeat hospitalizations, but given how often it keeps showing up, Dr. Mautner believes it’s worth exploring.

Mautner says she is sure about one thing. “Patients like Jackie Coleman have a lot to teach us. If we don’t get to know Jackie, we can’t hope to solve the problems that they face,” she says. Coleman’s advice: “They got to take the time to listen.”

Something Coleman knows isn’t always as easy as it sounds.

About the author

Dan Gorenstein is the senior reporter for Marketplace’s Health Desk. You can follow him on Twitter @dmgorenstein.

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