Tom has progressed from HIV to AIDS and is suffering from an open wound on his leg, anemia, incontinence and numerous opportunistic infections. He’s had the open wound for over a year now and has been in and out of the hospital a number of times for it. We continue to be challenged by his undiagnosed psychosis, as well as borderline personality and bipolar disorders, all of which he has never received long-term treatment for despite his lengthy and numerous hospital visits.”
So opens a discussion of a final patient case conference made up of students participating in a national hotspotting collaborative. This pilot program at the University of Houston brought together an interdisciplinary team of six students from different health-related fields to understand critical issues surrounding high-cost patients who frequently turn to emergency rooms for problems better handled by primary care doctors and social workers.
As health care costs continue to rise, providers are trying to find these patients and get to the root of their problems. The purpose of the hotspotters is to take a holistic approach to intervening in these patients’ medical lives to ensure they receive adequate and efficient care, as well as ease the strain on health care resources.
Often referred to as super-utilizers, these patients have complex care needs, struggle to navigate the intricacies of the health care system and have medical and social barriers that keep them from getting the quality care they need. Compounding Tom’s problems, he doesn’t have a primary care physician, has no one to advocate for him and is currently homeless, living in his mother’s car. A typical super-utilizer makes more than 10 emergency room visits and is hospitalized four or more times a year. They constitute the sickest 5 percent of patients, yet account for more than 60 percent of health care costs.
The Interprofessional Student Hotspotting Learning Collaborative is a six-month program, hosted by the Association of American Medical Colleges, Camden Coalition of Healthcare Providers and Primary Care Progress. It trains interdisciplinary teams of professional students how to work with complex medical and social needs, using a patient-centered approach. UH was selected as one of 30 schools across the country to participate.
The UH students chosen to collaborate as hotspotters were Shajuan Alexander from the Graduate College of Social Work, nurse practitioner Sanjay Abeyadeera from the College of Nursing, Meagan LeGrand from the College of Optometry, Rebecca Kessinger from the College of Pharmacy, pre-med student Alyssa Nguyen from the Honors College and Nicholas Tolat, who is not only a law student at UH, but also is in medical school at the Baylor College of Medicine.
Starting in fall 2016, the students partnered with Dayna Gurley, an intervention manager and medical social worker from the Patient Care Innovation Center in Houston, to meet with and follow four high-utilizing patients. In addition to patient visits, students met as a team monthly to discuss their patients and develop interventions to help them reduce emergency room visits and hospital admissions.
When the care team last met, their patient “Tom,” whose name has been changed to protect his privacy, had declined significantly despite their very best efforts. When they last saw him in December, he was very weak, pale and out of breath. He was unable to walk without a cane or assistance. With this additional stress, his mental health also was deteriorating, causing issues with his family, who would no longer allow him to come into the house due to the disturbing behavior resulting from his untreated psychological disorders.
“How these students deal with the various roadblocks, whether it’s the imperfections of the system or the patient appearing to sabotage his own care, they have been amazing in staying with it and persisting to work on ways to meet all the different challenges that keep popping up,” said David Wallace, one of their preceptors in this project and a clinical associate professor of pharmacy at UH. “They are amazing in their stick-to-it-iveness, and for them to keep on plugging away at it is remarkable.”
Others would have long given up on Tom, including the system, but not this group of determined students, despite all the tremendous difficulties and so many of their efforts falling through, usually at the very last minute.
“It almost seems like he’s slipping through the cracks rather than falling through them,” said Dr. Stephen Spann, planning dean of UH’s proposed College of Medicine and faculty advisor to the group. “Despite every effort, he slips through each time, and you just can’t get your hands around it to help him.”
While this is an extreme case, Spann points out that the same thing happens with many clients, saying it’s very easy for these patients to get labeled as noncompliant or difficult. “We’ve got to figure out why this patient is being labeled and how to overcome it,” Spann said. Whether the system failed him or the patient didn’t always do his part, the fact is that his issues have not been addressed.
“There have been a number of system failures when it comes to this patient,” said Tolat. “One of the biggest external system failures is the fragmentation in care. We know he’s been to one hospital at least 35 times in the last year, as well as visiting three other hospitals numerous times. The lack of communication between the hospitals was a huge problem and barrier to improving his health.”
Tom would go to one hospital ER, receive care, get discharged and then the next day go to a different hospital ER and get the same kind of care without the hospitals communicating with each other. As a result, he would bounce from hospital to hospital, receiving the same care without ever really resolving his health issues.
The students also encountered internal system failures with the tendency for nurses and other health care providers to label patients with such tags as noncompliant, difficult, drug seeker and hypochondriac. As a result, when nurses would provide care to a patient, they would be coming in with preconceived notions about them. So, whenever the patient did anything to support the notion, such as not following through with wound care recommendations, as was the case with Tom, it ultimately affected subsequent care a patient would receive from other health care providers.
“It’s extremely hard to navigate the system, even with a team helping you out,” Tolat said. “We were there to help and tried to obtain some kind of continuity of care. Despite our best efforts, progress with this patient was very slow and difficult. It’s really been striking to us as a team that this journey has been so challenging. We can’t imagine how he would’ve navigated this on his own, especially with poor family support.”
Despite the challenges, the hotspotting team from UH is using the experience to propose better health care practices and institutional improvements when dealing with high-utilizing patients. The effort supports the mission of UH Health and proposed UH College of Medicine to close the gap in public health disparities. Upon completing the program in January, each team participated in a conference in Philadelphia to share their experiences in a final presentation, summarizing their work with a patient. While they also followed three other patients during their six months of hotspotting, the UH team decided to present Tom’s story, because it presented just about every challenge you could encounter as a hotspotter—truly a textbook case. But this is not a textbook. This is real life.