“I’m too early. Typical,” I thought as I sat silently in my car, eagerly waiting for the day to begin. On the first day of my elective rotation, I arrived at the Damien Center in downtown Indianapolis fifteen minutes before the doors to the building were unlocked. I would spend the next month at Indiana’s largest AIDS service organization in their sister clinic, Damien Cares, seeing patients with HIV and AIDS. Although I love being early on my first day, this has led to a great deal of waiting in my car. As I sat there, the engine gently purring, I wondered what the month would hold. I quizzed myself on what I knew about HIV: the risk factors, the pathophysiology, the medications used to treat it and how they work. I stopped mentally drilling myself when I realized that I didn’t actually know much about the day-to-day life of a patient with HIV. I had studied the disease enough to pass the test, but I hadn’t had an opportunity to really get to know any patients with HIV.
I thought about the struggles patients with HIV in the US have had since the 1980s. I had learned about the social implications of HIV and I wondered what emotional hardships these patients had been through. I already knew that my month at the Damien Cares clinic would teach me a great deal about medical management of patients with HIV. I realized then, while sitting in my idling car, that it would also deepen my knowledge about how to care for a patient as a whole person.
My first patient was a gentleman in his early 50’s. He had been on ART (anti-retroviral therapy) for years and came to the office for a visit as an established patient. I followed my preceptor, Randall McDavid, NP, into the exam room and introduced myself. After a pretty uneventful follow-up visit, Randall and I sat down in his office. He turned to me and asked, “If you saw that man walking down the street, would you think he had HIV?” I quickly responded, “No, I wouldn’t.” This patient did not look like he was HIV-positive. Neither did my second patient. Or my third patient. As someone that recognizes the damage that stereotypes can cause, I’m always trying to purge myself of my presuppositions about people. As I saw more patients on that first day, I realized I had failed to do just that; I had unconsciously built up presuppositions about how an HIV-patient would look or act. I expected patients with HIV to appear much more sick than this gentleman had.
I was reminded on this rotation that by unconsciously pigeonholing a patient, I set myself up for failure as a provider. Even something as simple as having preconceived notions about what an HIV patient looks like can affect the way I practice medicine. There are certain risk factors that make a patient more likely to acquire the illness, but HIV still affects every sex, gender, age, race, sexual orientation, and socioeconomic status. Embarking on the slippery slope of making assumptions about patients can lead to big mistakes in forming treatment and prevention plans for them. By making assumptions about patients, I also miss out on the opportunity to get to know and learn from them, which could benefit my future patients. It seems simple, but it is easy to overlook the fact that everyone suffers when providers make assumptions, especially in a patient population as diverse as the HIV community. There is no one face of HIV. This month, I have been learning to stop giving it one.
I held the diaphragm of my stethoscope over his left chest and heard the thunderous, rapid lub-dub of his heart. I finished my physical exam and told Randall that everything was within normal limits, except his heart, which was beating quickly. The patient shifted uncomfortably in his chair when we asked him questions about his sexual habits. He laughed nervously when we inquired about drug use. This was the typical behavior of a patient new to the clinic.
New patients with HIV experience a spectrum of emotions during that first visit, including fear and anxiety. Their anxieties include questions about what it means to have HIV, if they can afford the treatment, and ultimately, if it will kill them. They are nervous about if the people they meet at the clinic will judge or chide them. Their fear of being rebuked is legitimate; decades after HIV showed up in the US, it still carries a stigma and is very closeted. The medical and social concerns that a new HIV patient has culminate into a patient presentation like the one I described above: visibly restless and apprehensive about being honest with their provider.
An established patient with HIV, however, is a foil of a new patient with HIV. While new patients tend to be restless and apprehensive, many established patients are calm and relaxed. Long-time HIV-positive patients understand that if they are compliant with their medications, their life can be much like the life of a person that is HIV-negative. They are happy to see Randall and talk about their social and sexual histories with ease. The visit becomes less about HIV and more about friendly conversation and getting to know each other. During physical exam, their hearts beat at a regular rate again.
Some of this release of anxiety in patients is because of patient education about the disease and the effectiveness of HIV medications. HIV pharmacotherapy has progressed a great deal since the 1980s. Many patients with HIV take just one pill per day and have an undetectable blood viral load. Causes of death in the HIV population are increasingly due to chronic illness, like most of the US, and less due to immunological compromise because we diagnose and treat earlier. The average life expectancy of an HIV-positive patient is the same as an HIV-negative patient. When patients learn about these advances in our understanding and treatment of HIV, many of their fears are quelled. This, however, is only a part of the cause for calm in established patients.
The other, bigger, part of the relief of anxiety for established patients with HIV is the relationship that they build with their provider. The care that Randall provides his patients is non-judgmental. He talks comfortably about patient’s sexual habits and drug use without scolding them. I have watched patient’s anxiety melt away during office visits because of the relaxed demeanor. This allows the patient to be honest, which enables Randall to take better care of them. I have observed that this kind of therapeutic relationship is the key to success for patients at the clinic. The patients that are most healthy are patients that have built this kind of relationship with Randall. In the presence of empathetic medical care, the patient’s viral load and anxiety both drop. Randall always says “HIV is a relationships disease,” and he’s right. Because HIV is a physically and socially taxing disease, it is best treated with appropriate medical therapy and a caring heart.
Seeing established patients with HIV gives me so much hope during those initial patient visits at the clinic. As a future physician assistant, I have the opportunity to be part of what brings that hope to fruition. I can walk with patients on their journey to have an undetectable viral load and an unbroken spirit. This month, I have learned that even in in the face of a disease that used to be a death sentence, there is hope on the horizon through proper medical treatment and a truly therapeutic relationship. Serving patients in this way, however, is not simple. It requires a concerted effort on the part of the provider to be intentional about the medical and emotional care they offer. I have learned that part of that intentional care is to resist pigeonholing patients and to actively dismantle stereotypes that we create. I have learned that it means listening and responding in a way that creates a comfortable environment for the patient to be honest in, regardless of any social stigma involved. Truly treating a patient as a whole person requires all of these things and nothing less.