Friday, July 29, 2011

How to be Non-Compliant Without Really Trying

CNN Health recently ran an article titled, "Are You Giving Your Doctor a Headache?"
How's that for a distressing lead-in?

The article refers to the "Patient Who Knows Too Much," a near-archetypal patron of medical offices, apparently oft-discussed in online doctors' forums.  A stereotype in the worst way, this patient is described as an overweight, frequent internet user who is gullible enough to believe anything they read on the web, without regard for the reliability of the source.

The author waffles back and forth between acknowledging whatever truth exists in this stereotype to berating the doctors who apply the condescending title to their patients. In the end, she refers readers to a CNN sister site that includes a list of reputable medical resources and tips on how to be a "savvy" patient.

Although the intentions of this article may be good, the reality is that it manages to essentially devalue the patient perspective; every person who (shock and horror!) questions their doctor, or does their research, is placed into a neat little box labeled "well-intentioned, idiot layperson." Those who do challenge their doctors and end up being right are seen as having "trusted their instincts." Conversely, it gives the impression that the majority of doctors are inconvenienced or insulted by patients who attempt to inform themselves about their own health and well-being.

Are things really so black and white?

How Much is Too Much?
Surely, they can't be. You, dear readers, are evidence to the contrary. So is this wonderful article, written by a former OBGYN doctor, Lissa Rankin. Dr. Rankin sheds some light on the proverbial "Patient Who Knows Too Much:"
"As a physician, I know EXACTLY what kind of patient these doctors are talking about. They show up with ten pages of info they've downloaded off the internet, and some of it is from sites of questionable repute, often bordering on, or flat out stepping plainly into, propaganda."
You know the websites - and probably one or two of the patients - to which Dr. Rankin refers. But, fear not - this is not all there is. It goes without saying that there are many individuals out there - and I count myself among them - who gather information from reliable resources, read peer-reviewed journals, and truly weigh all their options, risks and benefits before making an informed choice. Rest assured, if this is you, you are not "The Patient Who Knows Too Much." Or are you?

I can tell you from personal experience, there are no guarantees that a doctor will work collaboratively - or even politely - with you in finding an appropriate course of treatment, should you decide to question their approach, do your own research, or seek a second opinion. This is particularly true when it comes to pregnant women and young children. Over the course of my pregnancy and the first year of my child's life, I have had doctors and health professionals shut me down, shut me out, berate and ignore me. I once had a nurse walk out on me while in late second stage labor because I wouldn't wear a hospital gown.

For the record, I'm not a particularly rude or obstinate patient; however, I do my research, ask questions, and respectfully, but firmly, convey my decisions. Some people simply don't like that.

If only more people shared Dr. Rankin's attitude:
"Doctors who get annoyed by patients who ask questions, second guess them, read stuff on the internet and make their own decisions based on their own gut instinct, need to get off their high horses and get over themselves."

Patients in a Haystack
How many patients actually challenge their doctors in this way? I haven't been able to find much data on this, and I would think the nature of such interactions might make them difficult to track. After all, what doctor wants it on record that his patients are questioning his expertise?

One question we can ask, however, is this:
What happens when we, as patients, DON'T question our health care providers?

Someone close to me was diagnosed with an illness that requires follow-up testing, per the Centers for Disease Control treatment guidelines for clinicians. However, after the initial results came back, the doctor who reviewed the case indicated that no follow-up was necessary. Luckily, this person is not the type to take things at face value, and they will likely do additional research and get a second opinion. But what if they weren't this type of person?

Another, parenting-related example - while pregnant with my son, I was told that a number of things were "wrong" or "problematic" with the way he was developing. According to my OBGYN, these were issues that would require heavy intervention in his birth. I was not willing to accept this as the final word, and so I sought a second opinion. After talking with another doctor and quite a lot of research, I switched health care providers half-way through my second trimester, and was able to have a spontaneous, intervention-free natural birth.

While I can acknowledge that these examples are most definitely anecdotal in nature, the implications here are significant. When patients are empowered, outcomes can improve.

Knowledge is Power!
One of the most helpful tools I have for empowering myself in healthcare situations is the "BRAND" acronym, which I learned during my Hypnobabies training. A simple guide for interactions with health professionals, BRAND stands for Benefits; Risks; Alternatives; Nothing (what happens if I do nothing); and Decide (please leave the room while I discuss/decide). Tools like BRAND can empower patients to gather information and make the decisions that are right for them.

Further, organizations like the Patient Advocate Foundation provide information and support for individuals looking to educate themselves about health-related issues and the healthcare system. Most hospitals also have on-staff "Patient Advocates" that can act as mediators and educators for anyone who requests their services.

The unfortunate truth is that many people don't even know that these resources exist. This lack of awareness is compounded by the patriarchal approach taken by many MDs practicing today; one professional opinion - theirs - is all you should need. If you are a pregnant woman or the parent of a small child, the cultural norms of behavior here in the U.S. can greatly influence compliance and perceived risk - if you question or go against the advice of your doctor, you can be seen as irresponsible or even negligent of your child's health.

So what's a know-it-all patient to do?

I say: "Keep it Up."  Question everything. Do your research (using reliable, reputable sources, of course!). Expect that health care providers will speak to you with respect, even when you disagree, and that they will treat you like the intelligent person you are. Ultimately, you are the only person responsible for your well-being and (at least until they are 18) that of your children. Go forth, and inform yourself! Your health depends on it.


  1. Last year, I had my first-ever abnormal Pap smear and I tested positive for HPV. It freaked me out because I had never had an abnormal before and I got to the point of crying when the MA told me that she was calling me to schedule a colposcopy. After working for Planned Parenthood for three years, I have had the chance to see colps performed and I know that they are NOT pleasant. Before I scheduled the colp, I called my friend and old co-worker to walk me through my decision.

    She reminded me that I had all the information I needed: I was, after all, the person who wrote the training manual for PP on protocols for explaining Pap results and birth control methods. After realizing that all I needed was another Pap in six months, I called the office to schedule that test instead of the more invasive - and expensive - procedure. I was dumbfounded by the reaction I got, not necessarily from the MA because she seemed more frightened by me "knowing things" than angry that I was making a decision about my body.

    However, the nurse practitioner was almost bitchy, definitely a know-it-all, and seemed almost put-out that she was "wasting her time" on another Pap instead of just doing the colp. When I told her my credentials for being allowed to make this decision about my own body, she stated that this was against all her training and best instincts. She seemed satisfied only when I said that if this one came back abnormal too, then I would have a colp - but of course.

    Yeah, it was normal - just like I thought it would be. I wouldn't go back there even though I liked the doctor well enough just because she is willing to be in practice with a NP who acts like to patients. And, because the practice's first reaction is to jump to the most expensive testing they can.

    Great entry, Lauren! I really enjoy reading both it and the articles you linked to!

  2. Wow, what a story! All that expertise and medical knowledge and she STILL questioned your ability to make your own decisions about your own body. Good for you for standing up for what was right for you. Thanks for the feedback, and for sharing your experience!