Don’t Make Trouble

So, how does someone find themselves creating the role of a medical humanist? I can tell you that there were signs a long time ago. As a little girl I’d often position myself to overhear conversations between adults, usually family and friends. I would repeat what I heard to my mother but she usually dismissed what I reported. She’d often say, “They didn’t say that. Don’t make trouble.” Somehow, I never gave up on naming “the elephant in the room” when I saw one. In my adult years I came to understand that my mother was trying to protect me from learning about the harsh realities of life.

Fast forward to 1998. This was the beginning of my work at the cancer center in Bennington, VT.  There, harsh realities were the norm. At that time, I was asked by the medical director to serve as a patient advocate but it didn’t fit me because I was never a cancer patient. Instead, I defined my role as a patient resource consultant and would meet with each newly diagnosed patient to identify their supportive care needs and help access services. Not only did patients tell me about these needs but freely shared their stories of shock, terror and confusion as they faced cancer. They must have realized that their “harsh realities” did not scare me away.

What I heard time and again during the resource consultant work was that patients frequently did not understand their diagnosis, plan of care and prognosis. And, they often confided that they did not share this with their cancer care providers. I suspect that some felt they would be offending the doctor by questioning their plan of care or just didn’t know what to ask.

I surmised that my interest in listening to a patient’s needs gave encouragement and permission to be candid about other issues related to their care. More importantly, I was hearing information that could influence treatment decisions. I recognized that there needed to be a system to bridge a communication gap about what may have been misunderstood or unspoken at the medical encounter. With this in mind, the role of medical humanist was conceived.

Interestingly, when I began to share my medical humanist’s notes with the oncologists, I heard my mother’s voice and wondered if I would be stirring up trouble by documenting what a patient may not have comprehended about their diagnosis, treatment plan and prognosis. My intent was not to expose ineffective communication but, rather, provide a vehicle to address misunderstandings. My apprehension was unfounded. The information in my note helped both patient and doctor have more open and honest conversations. In fact, surveys to evaluate the medical humanist intervention scored high marks on satisfaction from patients, oncologists and nurses.

Looking back, I can see how my medical humanist’s work helped build the foundation of the Center for Communication in Medicine’s programs to improve doctor-patient communication. Now, some 20 years later, patients are using similar prompts in SpeakSooner: A Patient’s Guide to Difficult Conversations, a tool I developed to open channels of communication with healthcare providers. I’m grateful that my mother lived long enough to see that I didn’t “make trouble” by helping empower patients to say out loud what they need to make thoughtful and informed decisions about care.