Two previous blogs on Medical Advocacy looked at ideas for getting the most out of your medical care, before and during your visit to a health care practitioner. This blog post will discuss some things you can do, and potential questions to ask yourself, after your medical visit to insure that you are being your own best medical advocate.
1. Reflect on what happened. Ask yourself: What did I come away from the visit with? Were my questions answered, and/or issues of concern addressed in a satisfactory manner? What advice was I given? Depending on the type of visit, outcomes could include anything from prescribed exercises, suggestions for dietary changes or supplements, new prescriptions, referrals to a specialist, or even reassurance that you have nothing major to worry about. In my view, the main thing to determine after any medical visit is: Do I have a plan of action? If so, is it clear? Does it make logical sense, based on what I know about my medical situation, and do I feel good about it? Can I follow the instructions given by my Doctor or other provider? Am I motivated and physically and emotionally able to follow the protocol? If any of those elements are missing, all is not lost! You can choose to follow some aspects of the advice, participate in only some of the plan, and put other parts on hold. If you have constraints (lack of resources, insurance restrictions, physical challenges, or other limiting practicalities), you can still check in with yourself to determine what you CAN do. Sometimes medical visits result in overwhelmingly vast recommendations for treatment plan options. If your medical problems are complex or deeply intertwined, you need not do EVERYTHING recommended. Pick out elements of the plan of action that seem reasonable, doable, and that you can commit to.
2. Give yourself a time frame. Unless you experience an immediate adverse reaction to a recommended drug, therapy, or course of action, give it a fair trial. The amount of time needed for a “fair trial” varies among people. Let’s say it takes three weeks to solidify a new habit or truly implement a change in behavior, or for a drug therapy to fully work. When given a new medical plan or therapy, I usually try it for three weeks. During that time, I look for the following: 1) Signs of improvement, 2) No discernible change, or, 3) Things get worse. An example of clear improvement occurred when I finally eliminated gluten from my diet. Over 15 years ago, I was diagnosed as “gluten sensitive”. I tried to cut out gluten, but failed miserably, partly because gluten-free food options weren’t widely available then. I quickly gave up on gluten free diet attempts before ever starting them in earnest. Instead, I just ate what I ate and endured frequent and sometimes incapacitating digestive discomfort. Then, while reading about “pathologies of the digestive system” during massage school, I suddenly had an AH HA moment. Studying enabled me to successfully rule out other obvious digestive abnormalities, and so I immediately decided to give the gluten free diet another go. That was four years ago, and quite honestly, one change fixed most of my digestive problems. The results were almost immediate, and by the end of the three week trial period, I was sold! Other times, I have tried modalities and therapies that didn’t work so well, or even made me worse. My first two attempts at chiropractic care fall into the latter category. Following back surgery in 1999, I decided to try chiropractic care for the first time. For unknown reasons, despite multiple visits with two different chiropractors, my back got worse instead of better. I definitely gave each attempt more than the three week trial, but after significant setbacks each time, I had to decide that Chiropractic wasn’t the best option for me at that time. I backed way off, and didn’t try it again until fifteen years later, in 2015. My experiences this round proved much better, although chiropractic care still remains an avenue down which I proceed very cautiously.
3. Pay attention to how things feel, over time, as you implement change or try new remedies. Sometimes, inevitably, things get worse before they get better. Obvious examples include most forms of cancer treatment, many surgeries, intense drug therapies in which negative side effects initially overwhelm positive benefits, and recovery from major illness or injury. Discuss with your medical practitioner what to expect and potential time frames for results . At some point, it’s crucial to ask yourself: How is this working for me? How does my body feel? How are my spirits? Are things better on the whole? This is where medical and bodily intuition come in. YOU know your body better than anyone else! If a drug or therapy or protocol doesn’t sit right intellectually, or doesn’t make you feel consistently better over time, it may not be right for you…even if 10 practitioners tell you otherwise. This leads to the point in all these blogs that I feel the most strongly about…
4. TRUST YOURSELF! Sometimes, this may mean going against medical advice. Remember that doctors and medical practitioners are trained professionals–but they are not gods. Sometimes, a recommendation just may not be the right course of action for you, and that is acceptable. Before proceeding against medical advice, ask yourself some important questions. Have I earnestly tried the recommendation? Do I have ideas about options that might work as well or better? Is there empirical data to support a different therapy or course of action? Have I investigated other solid, legitimate options? It’s probably best not to flat out ignore medical advice, unless you fundamentally mistrust the practitioner, have great discomfort or ethical disagreement with an idea, are genuinely unable to follow the treatment advice, and have sound reasons underlying your choice(s). Nevertheless, I think, it’s important to honor intuitions, by which I mean attending to your feelings, respecting your self-knowledge, and probing warning signs or “hunches” if something doesn’t seem right or OK for you. The whole landscape of your responses (both rational and feeling-based) matters. If powerful beliefs or intuitions steer you away from a medical recommendation, by all means, pay attention to that! Strive to better understand your reactions. And then, proceed cautiously and with an open mind, paying close attention to how your body responds to alternative therapies or courses of action you may decide to pursue instead.
5. Seek a second, third, or even fourth opinion if necessary. There is nothing wrong with seeking another opinion on a medical manner, either for affirmation of a diagnosis or recommended procedure, or to explore alternative plans of action. If a provider discourages you from pursuing a second opinion or balks at passing your records on to another physician, I believe it raises a red flag about the provider, and may say something about whether he/she is prioritizing your well-being. A professionally secure medical provider will not object to patients seeking additional information. It is, of course, a good idea to always check with your insurance to determine if they cover a second opinion. Sometimes, though, it’s worth paying for a second opinion yourself even if insurance won’t pay. As mentioned in previous posts, I have been pursuing the second (actually, third) opinion route with my right knee. I have struggled with an arthritic knee for years following a 1982 ACL repair that wore out over time. Last year, I had the ACL re-repaired, and subsequently also had a second arthroscopic surgeries to repair meniscal tears and “clean things up” in there. I still have chronic knee pain, and it’s getting worse. As a result, I have found myself seeking different opinions from different orthopedists this past year, trying to find answers and a more permanent solution. At 51, I am not quite ready for knee replacement, and I hope to find a satisfactory alternative, if possible. After three physicians and three surgeries in five years, I have had to tell myself to slow down with new opinions and surgeries, lie low, pursue physical therapy, and see what happens. In time, I will consult again with surgeon #3, with whom I have the best rapport, to determine the best course of action to stabilize my knee for the long haul.
6. Fill out surveys when you have strong opinions about a provider. This applies if your experience with a provider or medical office was either positive or negative. If you don’t or can’t get a survey from the office (i.e., the doctor or provider doesn’t seem interested in your feedback), then go online to Yelp or another reliable internet source and comment. This can help other patients make decisions about health care providers and assess who may be a good fit. An example of how helpful this can be came up at a recent dinner conversation with two friends. One had sought out a new dentist, because he (the dentist) was “good looking, with beautiful white teeth, and was pictured with his family in the photo.” The visit was a disaster, from the rude receptionist to the hurried and cold dentist himself. My friend was understandably disappointed in all aspects of the visit. When she came home and googled his name for feedback, the most prevalent comments were about his lack of bedside manner and the lack of professionalism of the dentist and his staff. My friend’s comment, and the learning for both of us, is to check references before you go, and offer up your experience to others when it is remarkable, in either direction.
I’m sure readers can add many other opinions and suggestions about what constitutes good medical advocacy. Please feel free to share yours! We all learn from our own and each other’s experiences, both positive and negative. It’s an increasingly complex system of medical care out there, and navigating through it can “take a village,” as they say.