I’m an ePatient blogger, academic, educator and breast cancer survivor. I write about my patient experience in hopes that medical professionals may achieve a better understanding of the patient’s perspective of the medical system.
Like any profession, physicians are the experts of their field, but no doctor is the expert of all human pathophysiology. Because of this, the emerging interdisciplinary team of specialists has become a pragmatic step. As a result of my multitude of illnesses, I see a lot of medical specialists and do not expect each of them to be an expert in my other illnesses. Patients recognize that doctors are human and have limitations. In turn, doctors should recognize that many patients are complex in their own illnesses, experts in their own pathography. In my personal experience, I receive the most wholesome and most satisfying medical care when both experts — the physician specialist in his or her field and the patient — are attuned to each other’s strengths and weaknesses.
Not long after my major breast cancer surgery (bilateral mastectomy with immediate deep inferior epigastric perforators (DIEP) flap reconstruction), my husband noticed that I wasn’t breathing well when sleeping. I started to snore (something I’ve never done before, I swear) to the point of actually waking myself up. He also reported that my breath was shallow during the night. It wasn’t so much that I stopped breathing but more so that I wasn’t breathing well.
After a long wait, I was seen at the sleep clinic. The first doctor I saw was a fellow. She was nice, but when I asked if she knew about breast cancer, she did not admit to her lack of knowledge. I did not expect her to know, but I did expect her to be honest about her level of knowledge on the topic.
During the interview, I began to feel like something was not right. At first, it felt like I was often repeating myself and was not being heard. As the conversation progressed, it became pretty clear to me that the fellow had no idea about breast cancer treatments. In my case, this was very relevant. My breast cancer was hormone positive and the associated treatments involved blocking hormone production, which would directly impact my sleep physiology.
Her lack of knowledge of breast cancer treatment meant that she did not fully understand the medical terminology that I was using. She didn’t understand the medications that I was taking. She didn’t understand the impact of the surgeries that I had. Therefore, she couldn’t see the connections between my breast cancer treatment and my sleep issues.
Now, when I asked her if she knew about breast cancer treatments, if she had been upfront about her lack of sufficient knowledge, I could have educated her. I could have become the teacher and provided the background information that she needed. I could have told her that my breast cancer was fed by estrogen and progesterone, and to help prevent the return of my cancer, I was taking medication that prevented my body from producing estrogen. In addition, I could have explained in more depth about how the surgery to remove my cancer involved a bilateral mastectomy and reconstruction. These details mattered because they directly affected how I was sleeping. By not being open about her gaps of knowledge, she was unable to access the expertise that I held — the personal history of my cancer and its treatment progression. Perhaps worse than losing her opportunity to learn, I also lost all faith in her as a care provider.
Fortunately, the attending physician at the clinic was familiar with breast cancer treatments. He knew what it meant when I said I was taking tamoxifen. He understood that although I was a young woman, my body was in medically induced menopause. After I was able to discuss my personal medical history with him, I learned that most women with sleep apnea present after menopause. There is a direct link between lack of estrogen in the body and sleep apnea. In the follow-up visit, a different attending mentioned that sleep apnea and hypopnea can be caused by “a change in chest mechanics”. It is pretty clear to me that a bilateral mastectomy with DIEP flap reconstruction would qualify as new chest mechanics. The attendings’ willingness to hear about my breast cancer treatments made me feel like my experience was an important part of diagnosis and treatment. As a patient, I find that it is I who am connecting the dots between my cancer treatment and the comorbidities or complications. In this way, I am able to provide a more comprehensive and connected clinical picture to the physicians I interact with.
I tell this story because it is important to recognize that medical professionals cannot become an expert at everything. Failing to acknowledge what you don’t know is not only dangerous, but it also causes your patients to lose faith in your abilities as a doctor. Sometimes, it is the patient that is the teacher, and that is okay.
Guest Writer
University of Ottawa
Rebecca J. Hogue (Becky) is an ePatient blogger and flexible scholar. She is co-founder of Virtually Connecting, a PhD Candidate at the University of Ottawa and Associate Lecturer at the University of Massachusetts-Boston. Professionally, she produces self-published eBooks, and teaches Emerging Technologies and Instructional Design online. Her research and innovation interests are in the areas of ePatient storytelling (pathography), blogging, and online collaboration.
