What patients and families need is a clinician advocate who is available to listen, translate complex medical language, and support both the physical and mental health of the patient.
I was coming to the end of a long clinical session and my last patient was an 11-year-old young man with a complex neurologic syndrome, who I had never met before. The reason he came in was for a high heart rate. I reviewed the chart before going into the room, and learned that he was seeing multiple specialists for neurodevelopment, orthopedic, and feeding/growth related issues.
Today, the concern was his heart rate. I collected my thoughts, took a deep breath, and entered the room. I immediately focused on the young man in a wheelchair. He smiled right away as I engaged him with an introduction. Also in the room were his mom, dad, and grandfather. We exchanged introductions and I sat down to start the visit. “What brings you in today?”
I’m not sure where to start
Mom took the lead and said, “I’m not sure where to start … The main reason we’re here today is to get an EKG for his rapid heart rate.”
She went on to recount visits and discussions she had recently with his specialists about loose stools, anemia, post-hip surgery questions, new seizures, and occupational and physical therapy needs. I focused on being present and listening, but we all have those encounters where we’re thinking, “I’m not sure where to start.”
Both dad and grandfather added to the discussion and I continued to listen. I knew we needed to set an agenda for the visit and I began to outline my recommendations for how to proceed, planning to then ask if everyone was in agreement with the agenda. In that moment, I was reminded of why primary care is so important to patients and families. In addition, it reaffirmed why I love being a primary care pediatrician.
Partnering with patients
The first thing you might think is that the reward comes from the challenge of diagnosing and managing complex medical conditions. That is satisfying, but what patients and families need just as much is a clinician advocate who is available to listen, translate complex medical language, recognize the burden that families face with day-to-day care of medically complex individuals, act as a liaison between the medical teams, and support both the physical and mental health of the patient. This is an amazing responsibility and one that is often overshadowed by the focus on the medical condition.
Over the next few days I did all of these things for the young man and his family, including an EKG which was normal except for a more rapid than normal heart rate. We’re working through what might be causing it, but more importantly, the family knows that they have a PARTNER that is prepared to go on the medical journey with them without losing sight of the human connection. Isn’t that what healthcare is all about?