Team tackling 'super-utilizers' gives patients much more than medicine
Health care super-users are often chronically ill, alone and with limited incomes. They typically need the medical skills of a trained health-care professional, but also the listening, counseling and support offered by social workers and clergy.
Timothy Darragh reported this story as a fellow in the 2014 National Health Journalism Fellowship, a program of the USC Annenberg School for Communication and Journalism. Other parts of his series include:
Health care superusers overload hospital ERs
Transportation troubles hinder care for health care super-users
Waiting to go home patient Elaine Dries, of Allentown who does dialysis 3 times a week at Fresenius Dialysis Center on Hamilton Blvd. in Allentown, waits to be helped loaded onto a LANta Van to be driven home. (APRIL BARTHOLOMEW / THE MORNING CALL)
A group of caregivers, social workers, clergy and patients recently engaged in a lively but friendly exercise in downtown Allentown about how they'd like to improve wellness in a city filled with top-ranked health-care providers and untold numbers of worn-out, sick people.
Using markers and poster paper, Mike Briggs of Allentown gently scolded physicians in general, saying they too often overlook patients' needs beyond prescribing medications.
"It's easy to sit back and say, here," Briggs said, as if spilling a handful of pills on the table. If the patient is a shut-in and just needs social interaction, he added, "you're perpetuating the problem, not solving it."
Briggs, on crutches and wearing a protective boot on one foot, was there not as a policy leader or medical professional, but as a patient.
A participant in the Lehigh Valley Super-Utilizer Partnership, Briggs is one of 86 patients enrolled in a program designed to address the needs of people who constantly use the health-care system. The recent session was integral to his care, part of a program to surround patients with medical, social and spiritual support as a way to restore stability and independence to their lives. Funded largely with a three-year, $1.7 million grant through the federal Affordable Care Act, the partnership is trying to improve patients' health while reducing medical spending.
As the partnership sees it, health care means more than managing diseases and fixing damaged body parts. It's also a way of helping individuals become the best they can be, no matter their health or age. For those who are chronically ill, alone and with limited incomes — a portrait of many in the super-utilizer program — that may take the medical skills of a trained health-care professional, but also the listening, counseling and supporting that can be done by social workers and clergy.
"The point is that these patients have … become so isolated in their illness, their identity is fixed upon their chronic illnesses," said Janelle Zelko, the partnership's liaison to a community talent-sharing program called Community Exchange. "They have sort of forgotten who they are, and forgotten how to have relationships and forgotten that they too have something to contribute to society."
So when Zelko met with Dennis Kreisher of Allentown recently, she saw that the patient had an unusual skill that might interest others: He makes fine miniature dollhouse furniture out of Popsicle sticks and could share that talent in the community exchange, which a few dozen super-utilizer patients have joined. Kreisher could teach a patient the art of miniature carpentry and in return, receive an equal amount of time from someone who might drive Kreisher to his appointments.
Sharing a skill would help Kreisher feel something other than beaten down by his chronic obstructive pulmonary disease.
"It would give me a good feeling to teach somebody to do something like this," he said.
That exchange of skills and services, or time-banking, works, particularly for the types of people in a super-utilizer program, Judith Lasker, of the Department of Sociology and Anthropology at Lehigh University, found in a study of Community Exchange a few years ago.
"We conclude that a sense of belonging, a dimension of social capital, is key to improved well-being and that time-banking may be particularly valuable in promoting health and belonging among older and lower-income individuals and those who live alone," Lasker and her associates wrote in the January 2011 edition of the Journal Health Promotion Practice. The key finding, she said, was that many Community Exchange members reported that their health improved as a result of their participation.
Programs such as Community Exchange do two things that would benefit anyone, not just super-utilizers, she said: They show that each person has something to offer and that others value that.
"We make the mistake of thinking that the way to improve people's health is to provide more medical services," Lasker said. "And that is only half the story."
Upbringing, environment, social networks and family connections are all important factors that shape health, she added. Medical care is important, although not the most important element to good health, she added.
"It is," she said, "the most expensive."
'Before, I felt alone'
To help with that, Brenner sought out people who could develop trusting relationships with patients and see them as unique individuals.
"When we put our teams together, we look for someone who is willing to go out, find someone in crisis, build a healthy relationship with them and follow through on what they say they're going to do and not enable" the patient's negative behaviors, he said.
The Lehigh Valley program, which received the grant to emulate Brenner's work in 2012, has put a premium on that side of Brenner's care model. The local partnership team includes Lehigh Valley Hospital's Community Exchange program with which Zelko works; Pennsylvanians Organized to Witness, Empower and Rebuild or POWER, a faith-based community organizing program in Allentown; Sacred Heart's parish nurses as well as Neighborhood Health Centers of the Lehigh Valley.
Hasshan Batts, a social worker who visits patients in their homes, said it's common sense to address patients' social and spiritual needs in their health care. Providing for those needs, he said, is "foundational" to patients' overall well-being.
But getting a patient like Kreisher to the point where he could participate in Community Exchange would be challenging. Kreisher has his health issues and neither a car nor a phone. His case highlights the extra steps that would have to be taken to get some patients more involved in a healthier setting.
When they do get it, some patients say this after-care is beneficial.
Tanya Motley is a 38-year-old Allentown woman battling a host of ailments triggered by genetic sickle cell disease. Bone and joint pain from the disease can wear her down, she said. The partnership first helped by getting prescription medicine for insomnia delivered to her apartment.
"They call and see if I need help with anything," Motley said. "They call and talk to me. They are there. I actually feel more relieved. Before, I felt alone. … It was just too overwhelming. Now there is a program out there that actually helps me."
"Allentown is one of my favorites," Brenner said. "There is so much heart and soul there. They've done a great job of connecting with the church-based community. …These patients don't need more doctors, they need more community. And boy, Allentown's got community."
A few blocks from Allentown's new arena, team members including the Rev. Jewel Davis, held a potluck dinner last month with a few of the patients.
"When you look at people in a holistic way, their spirituality is just as important as their physical, their psychological, their biological, their medical [state]," she said. "It's part of their core."
Davis says she has contact with every one of the patients while they are in or after they finish the program. She says she's realistic about what can and cannot be done for patients who have been chronically ill for years.
"It's not so much that we want to remove a medical condition that is irreversible, but it's to help the patients find a way to live the best life possible, to have the best quality of life despite the circumstances that they're enduring, Davis said.
For instance, patients may need help understanding their discharge instructions or their medications.
"They'll come to me with the prescription and say, 'What is this and what am I supposed to do?'" Sacred Heart parish nurse Marilyn Meder said. "Nobody in the office had the time to spend an hour or 90 minutes with them."
Many times, emotional and psychological issues complicate patients' care, she said. Patients might be afraid to acknowledge their illness. They might feel that their sickness is punishment for something they did. Some people just don't think they are worthy enough to be helped, Meder said.
While Meder says parish nurses approach all their patients with the understanding that everyone is loved by God, not everyone is receptive to that message. "We have to be very respectful of people's rights."
That means backing off when patients don't want them around.
Alvin Bolster of Hanover Township, Lehigh County, also said he was glad to have social workers from the team visit him but that they couldn't help him with his care coordination, which is what he primarily wanted. "They'd come in and they'd talk and they'd talk, but nothing ever got accomplished," Bolster said.
The question is, does the extended care model work, or do the benefits fade as the good feelings subside? The answer seems to depend on whether the patients follow through on the advice they've received and work at maintaining social interaction.
Extensive research shows that socially isolated people are at higher risk for poor health and early death. In study after study, researchers have found that strong social networks are linked to better health.
Articles published in Critical Reviews in Oncology/Hematology, the Journal of Clinical Oncology and the Journal of Epidemiology and Community Health, for example, concluded that those with strong social networks had better chances of surviving, even with serious diseases such as cancer and cardiovascular disease.
The Rev. Maritza Torres-Dolitch of Christ Lutheran Church in Allentown fondly recalls George Pagnato, a patient who has since died, who talked to children in an inner-city summer program about himself and his advanced lung disease from a lifetime of smoking. He talked about what it was like to lug around a supply of oxygen and how he was living the consequences of decisions he made as a boy.
"At the very end, they clapped. He's, like, stunned," Torres-Dolitch said. "They came up and surrounded him."
Pagnato would say later that no one had ever applauded him.
"Here you have this broken man connecting with a community, feeling like he can give back to the community," she said. "All of these connections — health, soul, mind, heart — all of these things are connecting. When you have those things coming together and the community rallying and helping each other, that is precious. That is a gift from God."
What is a "super-utilizer?"
Generally, they are patients who are among the top 1 percent based on their health care expenses, not including trauma victims or patients who require regular, expensive care such as chemotherapy. They often have multiple poorly managed chronic and behavioral health illnesses, lack social support and are frequent users of hospital emergency departments. Because their health needs are so complex and their care uncoordinated, these patients frequently require expensive hospitalizations.
Cost of their care
In 2010, "super-utlizers," or the top 1 percent of patients as ranked by health-care expenses, accounted for 21.4 percent of total health-care spending. Their average annual health-care expenditure was $87,570. The top 5 percent of patients ranked by health-care expenses accounted for 50 percent of total health-care spending. The average annual health-care expenditure was $40,876.
Source: U.S. Agency for Healthcare Research and Quality
The Partnership
These organizations are involved in the Allentown Super-Utilizer Partnership: Neighborhood Health Centers of the Lehigh Valley; The Community Exchange; Parish Nursing Coalition of the Greater Lehigh Valley; and POWER Pennsylvanians Organized to Witness, Empower and Rebuild.
Photo by April Bartholomew/The Morning Call.
This story was originally published in The Morning Call.