Ten years ago my notion of being a good patient was to listen not communicate and leave. I needed to know [then] I had the right to ask. I learned quickly it was all about communication. Patients must feel they have permission to tell doctors, ‘I don’t understand…you need to say it in simple terms,’’ said Brian Gawlik a cancer patient who managed his illness for over a decade before undergoing a bone marrow transplant.
Brian went on to say, “I discovered that there is no benefit in hiding anything. It all feels so personal and invasive but it is our best interest to share it all. Every patient has to understand that this is a partnership.”
For a good part of the 10 years prior to his bone marrow transplant, Brian was a mentor and guided us in producing a series of Voices from the Lived World of Illness videos, which have been the centerpiece of many of the Center for Communication in Medicine’s (CCM) educational programs. We spent many hours filming patients talking about their experiences and then many more in the editing room. Working closely allowed for many revealing conversations about how he planned to manage what inevitably would be a re-occurrence of his blood cancer. He understood that the patients on film were in fact preparing him to think about the challenges ahead and a time of uncertainty about his future. These were serious and sacred moments together.
During one of these conversations, I asked Brian to put in writing his thoughts about being a good patient. He wrote, “A good patient is not being the patient you think the doctor wants you to be. A good patient is being who you are. We are who we are because we learn. Who I was as a patient ten years ago and who I am as a patient now is because of all the experiences I’ve had with CCM and talking with other patients. CCM helps patients understand what they need. I record my visits, which takes away the worry of having to remember everything the doctor said. It’s a process—a dialogue with others—with oneself.”
He went on to say, “Patient know thy self. Sounds so trite. You have to really do some soul searching –it’s work, not something you do on the way to the doctor. It’s that long walk kind of stuff where you contemplate your life—what you need, what makes you happy and what makes it much easier. When the communication process is efficient it leaves time for conversation—time to talk about anything else—to learn about each other and be in the human element. Communication goes beyond the doctor –it’s with family, friends, employees and employers. Now that I am getting closer to the transplant, I am spending more time thinking about what they’re feeling and that they have important roles.”
Brian summed what he learned about the communication process by concluding, “Patient know thy self, family know thy self and doctor know thy self.” Equipped with self-knowledge one can begin to communicate more clearly with another.”
Sadly, Brian passed away a year after his bone marrow transplant. What my dear taught me informs my life and work to this very day.