Understanding Your Pathology Report: A Patient's Story
There's a lot of daunting things facing patients when they go in for medical treatment. Terms never heard before, changes to lifestyle, new medications and the side effects of those—they all present non-medical personnel with occasions for misunderstanding, doubt, and even fear. And when the diagnosis is cancer, those fears are multiplied; it's not just fear of the unknown, but fear of not knowing what is happening to you or what is going to happen to you. While the goal of increasing communication between facilities and physicians has always been a priority in health IT, and has certainly escalated in importance in the time of EHRs, it is also important to remember what the ultimate goal of any endeavor is in the healthcare world: to provide better care to patients. So while patients may be able to access their PHRs now, or see reports previously held back from them, providing better care also now means providing context to all of this information. What is simply numbers and formulas for physicians can read like a death sentence to someone who doesn't know any better, letting their worse fears dominate their thinking and increasing their anxiety. It is therefore the physician's job not just to answer questions, but to put everything in the right frame so patients can properly understand what is going on and why certain treatments are necessary.
For many pathologists, they never speak to their patients. I've written in the past about how one pathologist put forth an effort to speak with patients on whose specimens he had reported. It's easy to be disconnected and use the oncologist or other physician as the go between—in fact, many patients probably prefer that rather than meet some new doctor to add to their confusing time. However, for those that do want to know more, it's vital that pathologists take the time to explain the reports and the diagnosis to the patient. While we are creating structured reports that are easy to read by physicians, they still appear as some undecipherable code to people outside of the medical field. Pathologists are highly trained physicians in their own right, and know their work quite well, so they can be able to patiently explain exactly what the results mean and how they will influence treatment.
College of American Pathologists (CAP) recently posted a video about one patient's journey to better understand her pathology report. While her other attending physicians could help explain the results, hearing it from the pathologist bolstered the patient's confidence in the material and her own understanding of her cancer diagnosis. By understanding the pathologist's findings, the patient was therefore better able to understand treatment decisions and regain some of the confidence that one loses when suddenly thrown into a vernacular they simply cannot otherwise comprehend. It's a stirring video that shows the power of direct communication between patients and pathologists, while also showing other patients there are resources out there (put out by CAP) to help understand their diagnosis.