In light of the downright scary new practice guidelines being issued by both medical and non-medical governmental agencies regarding everything from breast cancer (reduced insurance coverage for mammograms!), cervical cancer (no screenings for HPV until age 30!), prostate cancer (PSA levels “not worth checking-ever!”) and back pain (no causation beyond spine and spinal nerves remotely considered), I found this post, along with a series of recent posts on doctor-patient communication published at “Mind the Gap,” very relevant and thought-provoking. Here is my response to a posting today, October 9, 2012. http://wp.me/pGXmn-i7. The author, Steven Wilkins asks, “why are patients indicating they are more patient than they REALLY are on patient satisfaction surveys?”
I do agree that poor doctor-patient communication is the norm and not the exception. I could write a thick book about my experiences with doctors misunderstanding me, misdiagnosing me, blatantly disregarding any of my queries – and I am only 48.
We hear from Dr. Oz and WebMD that we are supposed to enter our doctor’s offices with lists of questions and concerns to make sure we understand our conditions and get the proper treatment. Do this in “real life” and you, the patient, is often seen as “troublesome,” or “difficult.” Some doctors become downright nasty if you try to engage them in a two-way conversation about your condition. I find this the case with specialists more so than PCPs, and much more prevalent here in the Northeast as opposed to the Mid-Atlantic and West.
My PCP is pretty awesome. He is the exception to the rule in many ways – now that I know him and I can tell when he is feeling rushed by the forced double and triple booking made necessary by recent laws (thanks Obama!!). Most of the time I can get my questions answered – but I have to ask them in a machine-gun fashion. Years ago, I learned to bring a printed update listing of all my medications, my current complaints, past diagnoses and any changes to my care made by my specialists. I give this to the MA when I check in, so my PCP gets it when he picks up my chart before he enters the treatment room. I now do this routinely with all my doctors, but I find that I have to “train” them to read what I have provided. It really is a huge time-saver and cuts down the chatter time considerably, leaving time for questions and concerns.
I have a medical background and take an active role in trying to figure out what is wrong with me (my PCP calls me a “real medical mystery” due to some complex ailments and genetic anomalies). I thoroughly research my conditions in professional publications and texts on PubMed and Medscape for possible clues as to what may be going on with me, since I know doctors rarely do a 15-second Google search much less research any matters and just try to fit the symptoms into the usual pigeonholes, except on TV. (This is what I call the “sounds like horses, must be horses” myth. In my case, it’s not zebras, its emus!).
It is incredibly fantastic that my PCP likes that I research my conditions, as the evidence-based movement and the new practice guidelines being issued by medical and non-medical (governmental) agencies telling doctors that certain tests are a waste of time and money (most recently, mammograms and PSA levels), or how to treat back pain, for example. (New guidelines published in Journal of the American College of Radiology’s October issue are horrifying. Today, if doctors followed these guidelines to figure out my back pain issues, my situation would have gone completely undiagnosed and untreated. Thanks to my research, and my PCP’s willingness to be open-minded to treatments other than antiquated and tunnel-visioned approaches practiced by the stodgy New England docs around here, I’m 70% better than I was 5 years ago. I’m not talking alternative med stuff, I’m talking about diagnostics and procedures developed in the past 20 years. Had my PCP followed these narrow-minded guidelines, I would be quite possibly be unable to walk without assistance and most definitely dependent upon bladder catheterization the rest of my life!!
However, most of the specialists I see do NOT respond well to any questions I have about my conditions, and remain silent about any research I bring to the table. However, appointments are booked so close together so docs aren’t really permitted time to answer any questions, much less discuss anything with patients. The result is that I (and I am sure a lot of others) are not getting the best care. For example, it is frequently suggested that I take a medicine contraindicated by my underlying abnormalities, or I am misdiagnosed completely.
Why do the studies reflect that patients are more “patient?” I think it is because at some internal level, we fear our doctors. We don’t want to anger them, lest we be deemed a “difficult” patient, and possibly receive less than optimal treatment. (Yes, this happens. I worked in a medical office and a hospital and saw it happen on numerous occasions.) The “Seinfeld” episode when Elaine gets labeled as a “difficult” patient and she cannot find a doctor to treat her anywhere in NYC illustrates this fear that is at the heart of many patient’s patience. I think that social media/blogging is allowing many of (like me) to work past this fear and advocate for better care for ourselves. I just hope doctors will start reading the blogs, Medscape updates, and other articles that are meant for them.