Doctor knows best?

This isn’t really birth-related, although I’m sure it has applications in that field; it’s more just a general medical discussion.

Recently, I was in conversation with an older woman who as a child was diagnosed with celiac disease but eventually grew out of it and was able to tolerate foods containing gluten for most of her adult life. Then a few years ago, she started having symptoms of celiac disease again. She went to her doctor, told him of her history and that she was pretty sure the problems she was experiencing (including rapid weight loss) was due to celiac disease, and asked him to perform the test to make sure.

Instead of doing that, though, the doctor mentioned all the possible diseases based on the symptoms, and said he wanted to rule them out, starting with the worst possible one — namely, cancer — and working his way down. I have no problems with him wanting to rule out cancer; it’s a common enough disease and potentially fatal, so if it is a reasonable possibility, it should be known for sure. In fact, someone I know just recently died of cancer that was undiagnosed because the doctor was treating his aches and pains as arthritis; it wasn’t until he became extremely sick and short of breath that he was diagnosed with cancer, and died a mere two weeks later.

What I do have a problem with, though, is the doctor apparently ignoring the most obvious diagnosis, particularly with the patient’s history. The woman said that it took a year of testing before the doctor finally diagnosed her with celiac, because he “started at the top” with ruling out the worst diagnosis, and gradually worked his way down, with celiac disease at the bottom of the list. Sure, rule out cancer, but in the meantime, draw a vial of blood to test for celiac disease — it doesn’t seem that difficult! The woman said that she was glad to know she didn’t have cancer (as would I, if cancer were given as a possible diagnosis), but that she didn’t like that it took so long to get the diagnosis.

And here is where I have a problem with her. I could be wrong, because I didn’t clarify this point, but it sounded like this woman was waiting for her doctor’s diagnosis (or rather, his confirmation of her self-diagnosis) before changing her diet to get rid of the symptoms of celiac disease. After all, the only thing that you can do is to avoid gluten — it doesn’t take a prescription or anything that “only doctors can provide” to start feeling normal again. But she waited a year!!! Inconceivable to me that anyone would do that — to know that you feel like garbage, and to know why you feel so bad is because you’re gluten intolerant, but continue to eat gluten-containing foods until “the authority” tells you to stop. I can see that if you can’t figure out what’s wrong, or don’t know how to fix it, that you would just suffer until the doctor figured out the medical mystery; but she said she knew what it was… and she said that she had researched online so even if she didn’t know at the outset, she must have known with just the tiniest bit of online research — she knew!… and did nothing?

But I will bring birth into this — sometimes women know that something is going wrong, but the doctors and/or nurses won’t listen to them, and then what? Obviously, it depends on the situation — if you’re in labor and strapped to monitors and the nurses won’t listen to you that you think your uterus has ruptured, there’s not much you can do — you can’t exactly go to another hospital or track down another doctor to give you a second opinion! I have heard of people calling 9-1-1 from inside a hospital, but I’m not necessarily recommending it. [Fortunately, uterine rupture is rare, and stories like this are even rarer, but I’ve read more than one study of women telling their nurses that something was really wrong and the nurses responded with answers like, “Well, this is labor, honey, it’s supposed to hurt!” And the blog “My OB said WHAT??” has similar stories with some regularity — of women being ignored when told their care providers of symptoms; or of the reverse situation — nothing was wrong, but the doctor, midwife or nurse insisted that something must be, and it ended up being a faulty machine or just a scare tactic to bully the woman into accepting hospital policy.]

And sometimes, people just order tests for reasons that have little to do with medical necessity, but more to do with the doctor practicing defensive medicine, or just getting money. I’m not accusing this particular doctor of delaying a true diagnosis so he could make more money by having half a dozen office visits plus a percentage of the costs associated with the various tests… but it is a possibility. My sister’s OB performed an ultrasound every prenatal visit because her insurance paid for it, so why not? It obviously was not medically necessary — she was low-risk before, during and after the pregnancy, with no fetal indication for an ultrasound during pregnancy either. Whether the doctor made extra money or not, it is certain that it cost money to do the tests to rule out cancer and anything else that might have caused the symptoms of celiac disease, and to do an ultrasound every prenatal visit.

One of my facebook friends made a comment (in the context of health-care reform… or not) about the United States having some of the best technologies but with worse results than other countries with socialized medicine. I don’t agree with the bills that are in Congress right now [my former CPM wrote this post recently, and I generally agree with her take on it], but think we do need to reform our thinking about health care. Starting with patients just accepting any test or intervention offered, regardless of the benefit. Like my sisters’ multiple unnecessary ultrasounds; or this woman’s multiple unnecessary tests over the course of a year prior to a simple blood test to identify her problem. And many, many other tests which are unnecessary, but cost a lot of money, and add great costs to the nation’s total cost of health care. My sister didn’t pay one dime out of pocket for her ultrasounds, but that doesn’t mean it was free. Assuming that each ultrasound cost her insurance company $200, and she had 10 of them during the course of her pregnancy, that’s $2000. Multiply that times two million (there are roughly 4 million births every year, but many women do not get an ultrasound with every visit, having only one or two per pregnancy, but other women do, and also have more frequent visits and/or ultrasounds, so I bet it would average out pretty close) — that’s $4 billion just in ultrasounds. Sure, some of those are bound to be necessary, but certainly not all.

The problem is, that when a doctor suggests something, it’s a reasonable thing for a patient to do to follow that suggestion — after all, he went to medical school and has all this training and knowledge, and you’ve hired him for his advice and suggestions, so why not take it? So, it’s hard to say “no,” and you don’t want to doubt your doctor’s ability — you want to be able to trust his opinion, since you’re trusting him with your life and health… but sometimes you ought to. I don’t know why that woman I mentioned submitted to a year’s worth of testing rather than insisting on the one test she was certain she needed; and I don’t know why my sister had an ultrasound every visit, except that it didn’t cost her anything.

One thing that would help to control the costs is to know the costs — and many people do not know the costs before the service is rendered, or their insurance covers it, so they don’t look at what it cost or they don’t care. But it all adds up.

7 Responses

  1. About the story of the u/s every visit – no wonder so many insurance co no longer cover maternity. With costs like that!

    • Yep — high prenatal costs, a 30% or higher chance of a C-section (with perhaps a $20,000 price tag, maybe more) — having a baby in America can be quite expensive.

  2. Actually it was appropriate to go straight to cancer, one NEVER grows out of celiac disease and continued exposure to gluten WILL predispose you to cancer at a far greater rate the the rest of the population (like having BRCA1 except it’s treatable). And too most physicians are not too savvy when it comes to celiac disease, those who are make it very clear that continued gluten exposure will make your body attack itself and cause other autoimmune disorders, and actually for some high risk OB/Gyn’s undiagnosed celiac disease is a common reason for recurrent miscarriage.

    And BTW, when I asked to be tested for celiac disease as my brother has it and I was dealing with obscene discomfort and symptoms after the birth of my first son they did test me and I was positive. Not all doctors forget to listen, and if you present it logically and not randomly they are more likely to go straight to what you suspect (like “I have been having cramping, diarrhea and discomfort for 4+ weeks now, my brother has celiac disease, I think that’s what I’m dealing with too.”

  3. >>Actually it was appropriate to go straight to cancer, one NEVER grows out of celiac disease and continued exposure to gluten WILL predispose you to cancer at a far greater rate the the rest of the population>>

    I don’t think Kathy meant this woman should have avoided a physician’s input entirely (correct me if I’m wrong). Certainly, she should alert her physician to a recurrence of symptoms, which probably but weren’t necessarily indicative of celiac disease. In reading this, it didn’t make sense to me why she went through a year of tests – not only expensive, but likely unpleasant – without also going back on her celiac diet. The whole story is an example of not only blind trust in a physician but lack of personal responsibility on the part of the patient.

  4. I’m with you on how extreme the step to test for cancer was, but Ethel is right, you don’t out grow Celiac, your body continues to not process gluten, but the symptoms change particularly in your early teens to mid-twenties.

    And doctors don’t know enough about Celiac disease either – and as far as I can – with 6 of them, OBs don’t know ANYTHING about Celiac which has huge impliactions if left untreated in concieveing and pregnancy.

  5. I have a friend who is waiting to be tested for celiac, but supposedly she needs to be eating gluten for 4-6 months before the test. Maybe this woman knew that and didn’t want to have to wait even longer to be tested?

    • Hmm, I know you have to be eating gluten for some period of time before the test, because the test looks for the “reaction” to the gluten, but I thought it was just a few days. One of my gluten-intolerant friends was never tested, because he figured out that he couldn’t tolerate gluten, and then didn’t want to knowingly ingest gluten [and feel horrible!] just for some test to show him what he already knew.

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