Wednesday, May 11, 2011

too much rage?

OK, saner infertiles. (In other words: all of you.) I need a sanity-check here. Well...I already know the "sanity or no sanity?" answer, more like where I go from there.

Many of you have encouraged me to get a second opinion, as my regular (Catholic) RE has a few practical deficiencies, such as the odd failure to answer phone calls or emails for two months. And in November or December, I contacted a doctor near my work to get an appointment for an initial consultation. She's not Catholic, and she was actually recommended by a coworker who has no fertility issues (AFAIK) and saw this doctor as an obstetrician. (The doctor delivers babies and deals with the infertile - no regular GYN work. Interesting.)

Anyway, the doctor requires both "partners" to show up at the first appointment, and each to fill out a voluminous medical survey. So far, I'm a fan. She takes forever to get to see, as evidenced by the fact that their first opening (and thus, our initial appointment) is tomorrow. So last night I broke out the survey and hammered it out.

Filling out a detailed survey about my infertility (and my life - more on that later) is quite upsetting all by itself, as I realized on later reflection. So I was already provoked. But I found the survey itself enraging, which is blindingly clear in my answers. I don't have it in front of me now, but I remember most of it quite distinctly. A few of my major complaints:

The heading says that the survey is for an infertility consultation, but the first page asks for the condition I would like to address. (This makes sense if the doctor is a generalist, or it's your first non-annual visit to an OB/GYN who doesn't know why you're there, but in this case, the condition would be...infertility.) And then the outcome I'm interested in. For all doctors, all appointments, any specialty, the answer is, "Remediation of condition above." Just asking the question is insultingly stupid, giving the impression the person who wrote the form (who I assume, in the absence of contrary information, is the doctor) is not paying attention and doesn't care. In answer to the first question, I wrote, "Infertility. (Do you get a lot of, 'I'll give you three guesses'?)" For the second, I wrote, "Finish all reasonably non-invasive treatment by my 30th birthday and resign myself to dying childless." Ask a stupid question...

Then the next page was two giant fields of boxes to check for all sorts of symptoms. The first one was moderately useful (included depression, fatigue, sleep issues), the second one not even remotely useful. It looked like it had been lifted straight from the sports medicine department's intake form, and included a great variety of items about joint pain and bone and muscle injury (not including the reproductive organs). Some hint of its profound irrelevance is provided by the fact that, with my dozen infertility-related diagnoses, I could check not a single box in the section. I wrote a note next to it: "Is this for the right specialty?"

Then there was a page asking about family history of potentially genetic illnesses. Definitely relevant, I would say. But still problematic. For example, one question asked me to check whether any relatives had had cancer. (1/4 of American women and 1/3 of American men die of cancer. The answer, for every patient, is definitely yes.) It then provided a two-inch line to specify the types of cancer (I wrote "various - breast, skin, lung") and then what relative had the cancers (also a two-inch line). I wrote "aunts, grandparents," which is accurate, but a sensible doctor would ask whether any maternal relatives had breast, ovarian, uterine, or cervical cancer, and how closely related they were - and request no information about sun-related skin cancer or smoking-related lung cancer.

Same problem with the mental illness question - I check yes, and now I have a two-inch line to state all the mental disorders in my family and another to explain who has them. Maybe this wouldn't be a problem for most of the population, but for anyone with a substantive answer, you'll never get any useful information out of that format. Again, gives a distinct impression that the doctor doesn't understand the matter at hand, is not paying attention, and doesn't care.

Also, delightfully, in the family history section, the survey asked whether the patient's children had any of several disorders. I get that there are people who are secondarily infertile and they need treatment too. Of course. (The survey asked about secondary infertility elsewhere.) But first of all, it strikes me that the portion of the infertile population that has multiple biological children is vanishingly small. The question seems to be taken from a generic family history chart, rather than tailored for this survey particularly. What would it hurt to have an early question about primary versus secondary infertility, and then a page for only the secondarily infertile to fill out, which has all the questions about children? That would be better organized and clearer, and also demonstrate some level of sensitivity to the fact that the doctor is earning her fees from the fact that I can't have children. This seems like a small thing to ask. (I circled the word "children," and in the "Explain" field below, I wrote, "This is an infertility consultation.")

Also on the "clueless and don't care" list is a question about prior surgeries. Not about prior surgeries related to infertility - all prior surgeries. And there are two full lines to provide all these details. I put that I had two laparotomies and the dates, and noted that the first had a bonus appendectomy, but if I had had room, I could have explained that both had companion laparoscopies, the second was accompanied by an HSG, how many cysts I had, on which sides, what type, and how large, and how extensive the endometriosis damage was and from where it was removed. If I were the doctor, I would want to know that. Why not offer a place for me to explain it? And what if I had had more surgery in my life than relates to infertility? Completely thoughtless.

There was also an area that asked about "menstrual irregularities," and it asked some specific questions, but not about estrogen and progesterone levels, nor about luteal phase length, nor anything about CM or temperature change. No questions about whether I'm demonstrably ovulating. Didn't even ask my FSH level! How basic can you get? Obviously, some patients have never been treated before, and they wouldn't know these things, but some of the questions are super-specific (the sports injury ones, for example), and others are so vague as to appear clearly disinterested. Why not a whole page for "veteran" patients with all their test results? And why no HIPAA consent form to obtain all records from prior doctors?

The whole thing gives the impression of being compiled by a bored 11th-grader serving as an unpaid summer intern who was only told halfway through that the survey was for infertility, and didn't know what the term meant.

My answers pretty clearly reflect this impression on my part. They're handwritten, and I only have one copy of the form. I'm still seething because I think the whole thing is so needlessly insulting, but I am thinking I have time to consider the best way to present myself at this appointment. I could turn in the form as-is; or add a cover letter explaining my tone and what about the form upset me (perhaps phrased more palatably than this post); or retype the form and type my answers, explaining that I did not have room to answer many questions in full; or I could retype the form in the format in which I think it should be presented, and either tell the truth ("I think your form is frankly offensive, and it should have looked like this") or be more subtle ("I put it in a format that helped me organize my information better"). I'm not sure I have time for the last option, but I wish I had done this a week ago so I would have.

Anyway, would be interested in your thoughts.

12 comments:

  1. Wow - I can completely understand your frustration and I personally would turn the form in as-is and then explain when I am in front of the Dr. why I answered the way I did and the tone that was implied by said answers.
    Sorry it was so blatantly generic, I hope your in person meeting goes better than the paper evaluation!

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  2. I would say that if the doc is a normal ob/gyn, I wouldn't expect any more detailed IF questions. Even if the top of the form says "infertility", normal ob/gyn's don't have the specific training that RE's do, and so while they could look up relevant questions online or call the RE in their area to ask what they should ask, my experience is that ob/gyn's have a completely different take on fertility (or infertility). Case in point, my previous ob/gyn thought a 7dpo progesterone of 6 was fantastic/totally normal. :-P If you are going to get a second opinion, I would definitely not waste your time on an ob/gyn- I'd just go to another RE and be firm with what you treatment boundaries are.

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  3. I am the type of person who provides TMI. :) I would provide on a separate paper the list of surgeries you had, HSG, cysts and any other infertility related info. It doesn't sound like the doctor gets that in-depth with results from the sound of these questions! Ergh. I understand your frustration, but would provide the extra info. Hope this helps.

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  4. I'm hoping the dr has no knowledge of or has not seen said form. For if the dr has approved this form my suggestion would be: find yet another new dr.

    Then again, insurance companies are picky beasts and often want information that has no bearing on the reason you're seeing the dr in the first place. Hopefully this is the case. Either way, I think you should definately bring it to the dr's attention, for that paperwork could easily cause many a patient to leave that practice.

    I can't help but want to encourage you to answer the sport related injury part with something along the following:

    Took football to crotch in PE, during puberty, convinced it rattled something lose and causing IF.

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  5. I know you're angry possibly, still, but thank you for posting this today. I am enraged over the complications that arise over a simple SA procedure. Yup. totally looking forward to trucking that in a cooler over town.

    Why does it have to be so frustrating/stressful AND humiliating?

    I'm just glad someone else out there is angry. otherwise I'd probably slap a stranger in the face for no reason.

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  6. Sounds like a stupid form and your anger is justifiable. I just always made my illegible. I found I would attatch a sheet with bullet points of stuff you really want to share. If she really cares so much as her dumb form indicates she will read what you want to tell her.

    I have written many letters to non-listening docs. Did it work. Sorta.

    Sorry to have to say it this way, but my philosophy was having 10 doctors that sorta helped me was akin to having 1 doctor that should be helping.

    I never relied on any 1 doctor ever, ever, ever. And, do you know how I really learned what they thought of my case? ONLY BY getting a copy of their notes because they would never tell me in person.

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  7. I can actually see the use of the surgeries question for future medical treatment, but the sports injuries? Strange. A separate piece of paper sounds like the best approach. (Is it too Pollyanna-ish to think she might just be using the form as a jumping off point for a discussion?) Hope the appointment goes well anyway.

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  8. What a ridiculous questionnaire! It's blindingly obvious that whoever compiled the questions is clueless or not very attentive. Or both!

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  9. I, too, would have taken the opportunity to write in sarcastic responses and then probably would have (given enough time) created an ACTUAL infertility questionnaire and filled it out, complete with enough space to write. What that would accomplish? Probably nothing but I would have thought it'd make them see that I was so much smarter than the rest of their paid minions when in reality it probably would have made some front-desk receptionist go "cool! now I don't have to type all this up!"

    I hope the appointment is much better than the documentation!!

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  10. I'm so sorry you had to suffer such a time-consuming disappointment. UGH. that's awful!

    Still, there might be SOME good that comes out of this. Hopefully. Maybe. Ima pray on that one.

    But don't give up. :)

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  11. Sounds like a normal history form to me.Some of it's relevant to tx, some it's CYA.

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  12. Could all the joint pain stuff be a marker for lupus? Random thought.

    It's strange sometimes, how people who are "specialists" seem so general. It's hard to find someone how seems to actually know enough to be worthy of trust.

    I do hope, however, that the doc is less dismal than her intake stuff.

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