The PATHways Program: A Case Study of Community in Action
OVERVIEW
The reflection that follows is not an academic paper, nor is it intended to be. Our successes were due to factors outside the scope of the scientific literature. There's no instrument to measure the impact of being welcomed into an intentional, loving community on the life of a marginalized, traumatized person living with HIV. How does one measure the impact of the deep sense of mission amongst all members of our team? How might one tease out the relationship between our common commitment to social justice and our patients' deep, basic needs to be seen as the full humans that they are? What follows is a reflection of the people who made our program successful, the tools that we used, and the successes that we had.
The PATHways Program at the Vanderbilt Comprehensive Care Clinic (VCCC) began in the winter of 2016 and existed in its original form until early 2021, when I left the VCCC for The Village at Glencliff. Of the original team, only Judy Stilke remains at the VCCC. I am beyond grateful to Judy and the VCCC clinical and administrative leadership for continuing and expanding the scope of our original program. Most of all, I am grateful to my mentor, Stephen Raffanti, MD, MPH, for believing in me and my vision for a better way to care for some of our most marginalized and at-risk patients. Without Dr. Raffanti's support, the program would never have seen the light of day.
The seeds for the idea of the PATHways Program came from a combination of clinical insights and academic research, a combination whose potency cannot be beat. In clinic, I saw the mental and emotional anguish of many of my patients and became increasingly frustrated with the relative lack of access to behavioral health support available to them. The VCCC was an early adopter of the model of comprehensive care for PLWH, but the resources available to our excellent psychiatric team were no match for the need I was seeing. Why should there be a difference, I thought, between the immediacy with which common physical ailments were addressed and the months it might take to get a patient engaged in therapy and psychiatric care for their emotional pain? Shouldn't emotional abscesses be drained as quickly as physical abscesses? Of course, the tools and techniques and time it takes to address emotional abscesses differ from physical abscesses, but we owe it to our patients to acknowledge their pain and offer curative measures with urgency.
From another perspective, I was also encountering the academic literature dealing with a variety of mental health disorders that were closely associated with poor HIV outcomes. These encounters dovetailed with my clinical experiences, and also laid the foundation for a novel set of instruments that we used to help patients see their own internal strengths and choose what they wanted their plans of care to focus on. Finally, I was aware from practice that my psychiatric colleagues at the VCCC and I simply didn't have a mechanism for regular communication about the differing aspects of the patients we were co-managing. This was no one's fault, but rather a reflection of the weekly number of clinical encounters we were both expected to produce.
THE TEAM
Emily Shearon was the first person to join the team as an undergraduate project intern to help codify the program and begin building out our data infrastructure. Later, Emily would be hired as our program's Administrative Manager. Emily's organizational skills and ability to quickly absorb new skills and subjects helped me immensely as I was concurrently seeing patients every day and trying to launch this program. Emily quickly transformed from an intern to a trusted peer, and the program is a reflection of her ideas and her heart as much as anyone else's.
My first official program hire was Karie Holldorf, MSN, in the summer of 2016. Karie came to the program with over a decade of clinical, case management, and administrative experience starting and running the Ryan White HIV Clinic at Loyola University in Chicago, IL. Empathetic, organized, and a fierce advocate for all her patients, Karie is, without a doubt, the best nurse I've ever known and continues to serve as my role model to this day. Karie made it abundantly to each of our patients, no matter how challenging they might be, that she saw them and respected their fundamental human dignity and agency. There was nothing in the world like watching a patient literally light up when Karie was burst into an exam room with both arms extended to wrap the patient in a warm, loving embrace. If you want to know the secret sauce of the PATHways Program, it was the love and community that our team created and shared with our marginalized, isolated, and traumatized patients. Karie was the embodiment of all that. Emily and Karie also had the dubious distinction of working in an office where any free wall space was literally covered with layers of often indecipherable poster-sized post-it notes upon which I flow-charted out every idea that entered my mind.
Next hire was clinic nurse, Judy Stilke, RN. Judy came to the program with years of experience as an RN in a variety of applicable settings, including working with patients with substance use disorder. Many of our patients bonded with Judy, and her kindness and empathy kept more than one patient in our program. After all, Judy was the nurse manning the program's dedicated phone line, performing triage for clinical, mental health, and physical health concerns and also refills. Judy was the connection point for everyone in the program, and her success in this role makes it abundantly clear that not everyone can be successful interacting with a call center - some people need a personal contact to remain engaged in care.
Our final hire to round out the team was Kira Zemanick, a former NIH research RN who we initially hired to lead efforts to expand our program to include outreach to hospitalized patients. Early success with our program led to a request from the Division of Infectious Diseases to expand our program to reach PLWH who were hospitalized with acute HIV or with severe complications of untreated and largely never treated, HIV. The power of social marginalization related to an HIV diagnosis is so powerful in some communities here in the Southern US that many at-risk people never get tested. If there is testing, then it's not uncommon for people to go to extreme efforts to conceal their diagnosis. Sadly, that's not an unreasonable strategy in a world where HIV disclosure can mean being shunned by your family, church, and entire community. What all of this leads to is a hospital admission for one or more out of control opportunistic infections and agonizing bedside disclosures of HIV status, often with painful repercussions.
It was into this environment that Kira volunteered to go, and in which she excelled. Given what you're just read above, it won't be hard to understand that a significant portion of patients leave the hospital and disappear without making it to their clinic follow-up visit. By establishing herself as an empathetic and effective ally, Kira built relationships with hospitalized patients that increased the likelihood of those people making it to clinic. When they go to clinic, Kira was there to greet them and ease their transition into care. Simple? Yes. Effective? Highly. Commonly done? Not so much.
Our LCSW, Raven O'Rourke, wasn't hired to be a part of the PATHways team, as she was already the Social Work Lead at the VCCC. We were, however, beyond fortunate to be given access to 20 percent of Raven's time so that she could serve as the program therapist. Prior to coming to the VCCC, Raven had worked at Nashville's largest AIDS Service Organization, Nashville Cares. Raven was well-known and well-loved by the larger community of PLWH in Middle Tennessee. While everyone on the team had large reservoirs of empathy and knowledge, it was Raven's unique gift to be able to have the most caring and simultaneously demanding conversations with program patients. Our approaches complemented each other perfectly, and I think I benefited from working with her more than our patients did.
THE WORK
Before discussing the mechanics of our program, it's important to discuss standards of care. When I began serving at the VCCC (then CCC) in 2009, we saw patients every 90 days for labs and a visit. Seems like a lifetime ago. Thanks to the increasing potency and tolerability of antiretrovirals over the past decade, we were able to change our practice and only see patients every six months for labs and a visit. During my decade at the VCCC, these were 15 minute visits, during which we addressed a patient's HIV needs, primary care needs, and (if we chose) mental health care needs. It was in this environment that I saw first-hand that this model, while effective for well-controlled, well-resourced, and socially facile patients, was failing to meet the needs of marginalized, isolated, traumatized, and abused patients. One of our greatest successes with the PATHways Program was our team's demonstration that there will always be a subset of clinic patients that need long-term intensive care, and that this is relatively easy to achieve with the right team in place.
We ran two clinics a week for PATHways Program patients - my other clinics were standard of care clinics as outlined above. In the PATHways Program, I saw patients for an hour once a month, during which time we addressed clinical care, mental/behavioral health care, and social/physical environmental concerns. At the same appointment, patients would meet with LCSW Raven O'Rourke for one of two monthly counseling sessions. Patients would be welcomed to clinic and roomed by program nurse, Judy Stilke, RN. Finally, program case managers Karie Holldorf, MSN, and Kira Zemanick, RN, would be available for any patient needs related to accessing community resources, as well as access to food, transportation cards, and other services. One incidental improvement that resulted from our approach was flipping the ratio between missed and rescheduled clinic visits. Our population had a high "no show" rate, with an adverse impact on their own health and also overall clinic performance. After only a few patients had entered our program, we began to notice a shift from people missing appointments to people calling the clinic proactively to ask to reschedule a visit.
Prior to each weekly clinic, our entire team met for an hour to review each patient's plan of care and all interactions with each patient since they were last in clinic. During this time, we formulated agreed-upon messaging for all team members to focus on during that visit. We all looked forward to these sessions, as we quickly learned that each patient would reveal different aspects of their story to each of us. It was only when we came together and shared the puzzle pieces that we had been given that we were able to see a fuller, more three-dimensional picture develop. There was real power in this, and it was done with full knowledge and permission of our patients.
THE TOOLS
A fundamental premise of the PATHways Program was that everyone has strengths. Our approach was to help patients identify their unique strengths and leverage those to build new strengths. Coming to clinic was never an experience of sitting in a chair and being told what to stop doing. In my experience, most people don't need to be told to stop smoking, stop abusing alcohol and other substances, or stop other unhealthy habits. Those messages get in the way of genuine therapeutic patient relationships. We encouraged patients to continue doing what was working and start building new skills of their own choosing.
How did we accomplish this? We used a unique tool that I designed called the Multi-Dimensional Patient Strengths Phenotype (MDPSP). I will share more about this instrument in future blog posts. Built off of a set of validated and commonly used screening tools, the key for our program was the color-coded interpretive report that I created. The results of each instrument, regardless of scale length or direction, were organized into one of three groupings and given a color code. This made it easy, and even enjoyable, to share MDPSP findings with patients.
THE RESULTS
Originally designed as a 12-week program with the option to continue as needed, we quickly learned that, once in our program, patients did not want to return to regular clinical care. This is and of itself was a clinically and operationally significant finding, and we were thankful to be supported by clinic leadership that understood that there will always be a subset of clinic patients that need ongoing intensive services in order to better manage their HIV, overall health, and lives.
Looking at HIV viral load suppression, our team achieved an overall viral suppression rate of 80% in a population that most would consider to be "challenging patients." While this was a significant accomplishment in and of itself, we were always more proud of the fact that we were able to help most patients sustain viral load suppression for as long as they stayed in our program, which was, in some cases, over two years.
Our most significant result, however, was the intentional, loving community that we created for our patients. Clinics were always part celebrations, part grieving, and always surrounding our patients with love. Patients may have been hesitant to be referred to our program, but once in, they quickly learned that ours was a safe space, a space where they could be seen as fully human, as full of possibility as any of the rest of us. A healing space in a broken world. We did this. Accepting, loving, and empowering people who have lived for too long in the shadows of their communities is powerful, effective, and most of all, just and right.