Jack Sollee ‘18 Children’s Hospital of Philadelphia
This summer I had the awesome opportunity to experience primary care firsthand at The Children’s Hospital of Philadelphia. Working directly with the chief pediatrician in the Leukodystrophy Center of Excellence in the Division of Neurology, I helped manage the care needs of patients with complex disorders. I acquired not only a valuable toolbox of skills, but also a unique perspective of primary care. While I had some idea of what to expect going into the summer, my experience fundamentally changed my understanding of what “primary care” means. By the end of the summer, I came to realize that an excellent pediatrician approaches patient health holistically and never limits herself to a specific form of care. An exceptional pediatrician considers not only a patient’s medical symptoms, but also their home environment, social interactions, nutrition, and more. This approach is especially important for children with complex neurological disorders, like those that I interacted with this summer. I’d like to share a particular example of a situation that occurred at the beginning of the summer that truly made a lasting impression on me and helped to change my working definition of a primary care provider.
Late on a Monday afternoon, a patient arrived in the Leukodystrophy Clinic at CHOP. A family member accompanied her. The patient had recently been diagnosed with juvenile metachromatic leukodystrophy (MLD), and was at CHOP for her first follow-up appointment. Juvenile MLD presents in children between 3 and 16 years of age and is a neurodegenerative disease that leads to rapid progressive muscle failure and loss of mental faculties. The disease is truly debilitating, and there is no current cure, though early intervention can prolong life expectancy and reduce symptoms. Some of the common symptoms include behavior problems, decreased mental function, blindness, numbness, difficulty walking, difficulty eating, loss of muscle coordination, seizures, and difficulty speaking.
The pediatrician is the first physician that exams the patient, followed by “specialists,” such as neurologists, nutritionists, occupational and physical therapists, etc. This is one of the unique aspects of the leukodystrophy clinic at CHOP – patients get cared for by a full panel of generalists and specialists that work together to provide the best care possible. I entered the room before the pediatrician, as was routine. I asked the patient about her current symptoms, any specific concerns she wanted the doctor to address at that day’s visit, made sure she was comfortable, and generally did anything that would make the visit go more smoothly. The pediatrician entered shortly behind me and performed her exam. The first half of the visit went as usual – height and growth curves, nutritional habits, family medical history, and a detailed physical exam. The patient’s physical health, at least as compared to most other patients we had seen that day, was far less perturbed. The entire visit, the patient seemed upset, but it was unclear exactly why. There was a feeling of tension hanging in the room that was almost palpable. It seemed as if the patient wanted to tell the doctor something but were too embarrassed or upset to do so.
It gradually became clear that this patient, at least for now, did not require physical care. Although this patient undoubtedly had complex medical issues that required a lifetime of physical care, today, the best way to help was to understand the source of her emotional distress, offer compassion, and work to resolve the issue. “Anything else that’s on your mind,” the pediatrician asked tentatively. “I’m here to help you in any way possible, but you need to let me know what’s wrong,” she continued. At that moment, the patient and family member reluctantly began to speak.
Over the next hour, the pediatrician patiently listened and initiated a chain of events that would effectively change two lives for the better. After hearing a truly tragic story (detail’s emitted for the sake of confidentiality), the pediatrician and the entire care team went above and beyond to help secure the young family’s future. They went beyond their role as “traditional” doctors. They worked tirelessly to build the best possible living, social, emotional, and educational environment for the unique needs of this patient. This involved not only helping the patient, but also immediate family members. The doctor and other team members took time out of their busy days to selflessly better the lives of others. The patient returned for a follow-up visit later in the summer and cried again, but this time out of joy and thankfulness.
While I undoubtedly had my fair share of heartbreaking and heartwarming experiences this summer, this particularly one stood out from the others. This particular experience inspired me to continue pursuing a career in medicine and taught me truly what it means to be an outstanding primary care doctor.