Guest blogger Marya Zilberberg is the author of Between the Lines: Finding the Truth in Medical Literature. She originally posted this piece on her blog Healthcare, etc.
I have been looking up information on endometriosis for a friend of mine, and came upon this from the American College of Obstetricians and Gynecologists:
So I bit and started reading. And about half way through my reading it I realized that this really reminds me of how they taught literature in my native USSR. The teaching consisted of stock interpretations of the great authors’ works through the prism of Communist Party propaganda. In this interpretation all of the writers’ messages railed against the monarchy, and all exhortations were for the purpose of freeing the proletariat. No teacher ever dared to disagree, and no student was expected to question.
Why, you ask, do these ACOG FAQs on dysmenorrhea remind me of my schooling in the old country? Well, glad you asked. Check out this gem, for example:
That’s it. No follow-up questions? Good!
But really let’s take it from the top. So, OK, there is the pelvic exam. I can deal with that because I am used to that as the default for anything going on “down there.” Then there is the ultrasound exam. I guess I can deal with that too because there has been so much in the news about pelvic ultrasound, and that seems to be what is done to get a better look at what is down there. A laparoscopy? Wait, isn’t that a surgical procedure? Yeah, they even say it’s a surgery, and it’s done to get a “look inside the pelvic region.” Hmmm, this sounds pretty serious. How come they don’t say anything here, in these FAQs, about what they are looking for, how good this surgery is at finding it, what the chances that what they find is responsible for my dysmenorrhea, what is the treatment and how successful it is at alleviating my symptoms of dysmenorrhea, and whether or not there are alternative interventions?
(Does anyone really ask the patients what their FAQs are or are they generated by the clinicians based on what they think should be important to the patient? Or even worse, based on what they think they can give a perfunctory answer to? Just from reading these Qs and As I think it’s the latter.)
You get my point. This formulation of information is beyond useless. It seems paternalistic in its “there there, dear, we will take care of everything” attitude. Perhaps I am out of touch. Perhaps women, patients in general, don’t want to go beyond what their doctor tells them to do. But I happen to think that it is these FAQs that are out of touch. Granted, I am a “difficult” patient, as even a pelvic exam, let alone ultrasound and surgery, meets with questions around the evidence of its effectiveness. But even if you have only completed ePatient 101, you should know enough to ask about something as serious as a laparoscopy! How can anyone be expected to just acquiesce and, sighing, say “yes, I guess I have to have surgery.” This “FAQ” is completely absurd in its willful lack of useful information. And if you read the rest of the document, you will find many places where this is true as well.
I know that some of you will read this and click away saying “oh, there she goes again.” But I think you need to rethink your apathy. After all, there are well over 200,000 deaths (and possibly even more than 400,000) annually in the US that happen unnecessarily just from contact with our “healthcare” system. If you can avoid the avoidable, is it not incumbent upon you to be fully informed? You may think that all these recommendations are evidence-based, and there is not a whole lot of wiggle room in how to proceed. Well you are wrong if you think so, since the evidence, even when it is available, is rarely, if ever, unequivocal. And furthermore, in medicine no benefit comes without a risk. Are you sure you want your doctor to make these decisions for you? How is it that people who are not even willing to take wardrobe advice from their mothers wade so enthusiastically into these high-risk medical adventures with their eyes and ears closed?
I wrote Between the Lines to show just how imprecise and uncertain the science of clinical medicine is. But beyond that, I wanted to provide you with tools at least to ask the right questions. So, please, go and ask. And insist that you be included in the FAQ processes. Otherwise, we are just wasting terabytes on propaganda.
Thanks Kathleen for this. I have many patrons in my consumer health library who for this, for endometriosis or for fibroids are given few options by their physicians other than surgery – STILL. It’s not like alternatives, minimally invasive non-surgical tests and treatments are new.
I find your point really compelling because I have endometriosis AND spent a year interning with an OB/GYN. Yet like many others, I have never questioned my doctor’s recommendations. Even with all of the health websites out there, it is hard to find correct information, and enough information to really inform those of us who have different diseases. The only reason I ever learned about my disease is because of an extensive research paper I did for a class. Without that I probably never would have thought to learn more than what is on popular websites like WebMD and MayoClinic. I never even thought to go to the ACOG website. However, from your post it seems like ACOG may not have helped much anyway when it came to my diagnosis and treatment plan. I think the long-standing tradition has been to believe a doctor and not question them, which plays into this Q&A you talk about that doesn’t actually allow room for detail. However, I think that with direct to consumer ads and social networks, patients are slowly becoming more aware of their autonomy and ability to make decisions, have the choice to refuse treatment, and get a second opinion. Your awareness of ACOG’s straightforward plan to diagnose shows how we as patients are changing our concepts of the doctor-patient relationship. We no longer want to be told what to do, but instead want to be informed patients. The issue of the simple diagnosis of the cause could be associated with how doctors are taught to write. When they learn to write in patient records, they are taught to look at the disease, the symptoms and not the extraneous circumstances patients often give, and write it in a medical data format. The problem you and I find with this writing style is that it doesn’t change in the way they express the information to the patient. Patients normally process in a narrative format and want detailed information about the how and why. Instead we get the possible solution but no explanation. I think your blog and other patients asking detailed questions can help shift the way doctors present healthcare information to patients. I know the doctor I interned with was always willing to answer any questions patients had by putting the procedure or information in a more step-by-step process. I hope that this applies to other physicians.
Frankly, I am frustrated by the “help yourself” mentality. Just pop a few ibu (never mind your kidneys), use a heating pad (really? at work for a week a month?) and exercise and all will be well. I call B.S. First, these treatments do not address the nausea and intestinal issues that occur with the cramps. Second, I already exercise, but the pain keeps me from it for at least a week out of the month.
The doctors act like severe and debilitating pain is normal and not something they are interested in determining the cause of or offering a safe, effective treatment for.
Clearly, they don’t HAVE anything to offer.