Informed, active, empowered—these characteristics describe the people I’ve worked with during my 30-year career as a certified clinical social worker and health educator. I have counseled people young and old during their acute, chronic, and life-threatening illnesses.
So will being “empowered,” “active,” and “informed” lead to better outcomes for me as I fight my illness? As a health educator, I should know how to be an “active patient,” right? I am certainly doing my best to actively participate in my health care, but it is challenging at times. I have new empathy for those who are frightened by their illness and have limited understanding and support.
After my diagnosis, one of the first steps I took to actively participate in my medical care was to understand my illness and my treatment. This was more complicated than I thought. For instance, it took me 4 attempts to wrap my head around using a nebulizer and the medications. In the hospital I had three different respiratory therapists (RTs) who set up my inhalant medications each day. I had another RT once I got home.
I had to ask each of them how the medications worked, the differences in the medications, and what I could expect from them. It would have been best if I told them I did not understand what they were saying. I should have asked them to use plain language. But I also realized that some clinicians are not skilled at this. Unfortunately, it wasn’t until I was at home that I received a clear explanation that helped me understand the hows and the whats of treatment. The visiting RT used an analogy and a visual image of what was happening in my lungs and how the medicine would help.
Learning more about my illness, I realized there were numerous resources to turn to—the Web, my family, and different members of my healthcare team. I just had to ask. However that is not a simple statement. What did I really want to know, and how would these answers make me more empowered? I searched the Web for clinical trial results related to my illness and wrote down questions about the treatment I may be eligible to receive. I had prepared a litany of questions citing the studies, the articles, and centers from where the information was gleaned. This made me feel more credible and prepared in case I was shot down for asking too many questions.
Imagine me worrying about not being taken seriously, being dismissed for asking questions! I am the person who helped her patients write the lists, showed them how to research their illnesses, and instilled them with a sense of confidence to talk with their healthcare providers (HCPs). Yes, I too was reticent. My little blue book of notes and questions bolstered my confidence and demonstrated to my nurse and doctor I was a partner in my care.
Thankfully, I do have the resources to help me take an active role in my healthcare. I am fortunate, but what about those that don’t have the internal or external resources… where do they turn? I hope they have the support of their doctors, nurses, social workers or other HCPs to figure out what to research, questions to ask, and the confidence in themselves to participate in their healthcare. The HCPs can be a strong ally when lost in a sea of foreign words and phrases that frighten any of us. I hope all HCPs incorporate analogies, visuals, and write out information as needed.
Other ways to learn is by teaching back what you were taught to demonstrate what you heard. While it is often used when a nurse teaches a skill or health related behavior—self injections, catheter care, or medication regimens—it can be useful in describing complicated medical information. The use of illustrations to describe body anatomy and mapping out a diagnostic workup and treatment plan is a fundamental step. This can be highly effective if medical information is new and learning is compromised due to heightened anxiety and stress.
My advice to other patients is to write down your questions and your thoughts about treatment relative to you. This reframes the issue from the abstract to you personally. Share what is important in your life with your healthcare team. It gives them a richer perspective on what is important to you and factors that you will consider in making your treatment decisions. Make note of your reactions to treatment—it improves your accuracy as a historian.
Being an informed patient and an active participant in my healthcare, I hope this plays a role in my treatment outcomes. However what is critically important is that I realize I have developed a deep trust in my doctors and my healthcare team. We have respect for each other and have built a partnership that I believe will contribute to a positive outcome.
Senior Vice President, Health Education