A Champion of Patient Education
Charles M. Balch, MD, FACS
Founding Editor-in-Chief, Patient Resource Cancer Guides
Professor of Surgery, The University of Texas MD Anderson Cancer Center
Past President, Society of Surgical Oncology
Past Exec. VP and CEO of the American Society of Clinical Oncology
My desire to practice medicine started at age 14 when I earned my First Aid merit badge in Boy Scouts, and it never wavered. I became a physician and spent the next four decades specializing in treating patients who had breast cancer and melanoma while conducting clinical research. In that time, I’ve seen tremendous advances in cancer management and learned a great deal in a rapidly advancing field of medicine. A particularly valuable lesson came from being with my parents as they dealt with their own cancers. My personal experiences taught me that an informed and educated patient is more likely to get better care and is always better equipped emotionally to cope.
What does it mean to be an informed patient, and whose responsibility is it to inform? It’s a team effort by the doctors and the entire health care staff and one that may even lead to a more successful outcome.
As physicians, I believe one of the most important things we can do is educate our patients, and I’m passionate about why and how we do it. When we talk with patients and their families, we want them to feel like they are active participants in their own care. We don’t want to simply tell them how we plan to treat their disease. Instead, we talk with them about our shared treatment goals and their expectations for their own quality of life as they define it. The more they understand, the more comfortable they are making decisions and following their personalized treatment plan.
We begin educating as soon as patients are diagnosed, but we try to be sensitive about how we approach it. During their initial appointment, they’re often overwhelmed. It helps if they bring a loved one or caregiver to every appointment to take notes, ask questions and offer support.
My team, including the clinical nurse, nurse navigator and patient educators, is very skilled at explaining the basics to my patients. They provide the foundation so that when I come in with more detailed information, my patients are familiar with what I’m sharing and the treatment options we are offering. Helping them better understand their unique diagnosis, such as the subtype based on genomic and other test results, and treatment options is key. This information is instrumental in determining the right treatment for each unique patient situation.
The next step is for patients to weigh this new information with what is most important to them and their families in terms of quality of life. This is a great time to ask questions. For example, regarding treatment, it’s good to know if it can be done close to home and if they can continue their job during treatment. We don’t want them to look back and think, “I wish I would have known this or that and made a different decision.”
To complement our face-to-face and phone conversations, we provide resources in different formats. Some people prefer to have printed materials that they can hold in their hands and read, such as the Patient Resource Cancer Guide. These materials must be easy to understand, not filled with medical jargon that further complicates an already complex situation. We like to use illustrations and graphics to help show where the cancer is and how we plan to treat it. We also provide practical information, such as potential side effects and what to do if they happen, or when a symptom or side effect is considered serious enough to report immediately. I also enjoy sharing patient stories. They are uplifting, and people often comment on how inspiring it is to read about how other survivors navigated through their cancer journey.
Some people prefer to learn online. It’s convenient to access information within seconds, but I caution patients about taking everything they read to heart. Some online resources aren’t reputable or reliable. They may contain misinformation and promise cures that can’t be delivered because they aren’t backed up by evidence. We direct our patients to trusted websites, such as this one, www.cancer.gov or www.cancer.org, to learn more about their type of cancer as well as find organizations that can help them cope with emotional, financial and other important factors. These resources offer a comprehensive approach to the entire patient experience. The list of online resources in the back of the Patient Resource Cancer Guide is a great place to start. Remember, no one has to go through this cancer journey alone.
Along with using the available resources, patients can help their treatment be most successful by attending all their medical appointments, maintaining a healthy lifestyle and taking their medications as prescribed, even when they feel well and don’t think they need them.
I can’t stress enough the importance of asking questions. Patients should never hesitate to contact their health care team when they’re unsure of something. We are partners, and we can help. When we don’t hear from patients, we assume that everything is going according to plan. So keep the lines of communication open.
There are uncertainties with every illness, but being educated is empowering. Patients have asked me what I or my wife would do in a similar situation. I respond that our definition of “quality-of-life issues” may be different from theirs and that they should plan according to their own wishes after understanding the indications and risks of each of the treatment options that might apply to them individually. I emphasize that everyone has his or her own ideas about the impact on their quality of life as it relates to selecting different treatment options. I encourage them to think about their own expectations so when they’re ready to make treatment decisions, they can feel informed and move forward with confidence.