Friday, July 16, 2010
Sometimes you don't want to know the answer
Pt is a 52 year old female in a monogamous relationship foe 33 years. They had not done anything for birth control and figured they would get pregnant if and when it happened. Needless to say she never got pregnant. They went to see their friendly neighborhood FNP who referred them for fertility counseling. Short while later she is pregnant with a donated egg. She has the sequential screen down and it comes back with a high risk positive screening for Down Syndrome. She thinks long and hard about it, talks to her pastor. Her and her husband decide there is no way they will terminate this baby and deny the amniocentesis. They say that they wish they never would have had the testing done as it anguished them for a decision they were never going to make anyway. Now they have a cloud hanging over the pregnancy instead of being truly able to enjoy it. She says she wish it would have been explained a little better, she just remembers being told it is one of those tests we do on all pregnant women. She was very clear that they never would have done it if they had truly understood what the test was. This goes back to the discussion Dr. Seibert had about should someone who would not terminate in anyway have the tests done. Sometimes you don't want to know the answer and would rather be in the happy dark.
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James: I am happy to report that I have seen the provider/pt. conversation of integrated serum testing (that's what they are using at my clinical site) described very accurately by the preceptors that I am working with; further reinforcing what Dr. Seibert taught us. It all comes down to knowing what type of person you are. Type A's will want to know so they can plan, plan, plan; Type B's will focus on on the bad news. Based on your description, this pt. sounds like Type B (waited many years before seeking out the fertility specialist, a Type A would have gone to the specialist after one year of infertility). I know I am grossly overgeneralizing personality types...And then you have to factor in the husband as well. Today I saw a couple mull over the decision of whether to get this testing. The wife was about to decline, but her husband wanted her to get the testing done; so she decided to get tested. So really, it comes down to what kind of persons you both are if you are in a committed relationship. And so what about women who don't have their partners w/them (e.g. deployed)? It really is a tough decision to make. And then it's also about the bottom line...in the end, regardless of whether you plan or not, the outcome (confirmed by amnio, which your "case" couple declined) won't change unless you're willing to to terminate the pregnancy. Partial ignorance is partial bliss...
ReplyDeleteI have had many patients with the same issues regarding the sequential testing which comes back positive for high risk. They state that they would have never gotten the test if they would have known the heart ache it caused. Many high risk mother's go on to get a series of Level 2 U/S and many visits to the Ob/Gyn only to find out their baby was OK...
ReplyDeleteI have to say that among the 5 providers I worked with at Bragg, only two abided the Golden Rule of Pt Education regarding the explanation of testing! It was amazing to see the decision process (spinning wheels) on the faces of the couples that had the educational component and the end point of having the test or not, versus the blind stare on the faces of couples who were none the more aware than any reading they did on their own. I agree with much of Ruthie's analysis...
ReplyDeleteI do believe, none the less, ALL patients should know what they are being tested for...without that we might as well just dub ourselves Tuskegee, right?
Tuskegee is an interesting (and actually fairly accurate) analogy. As all of you know, it's NOT OK to make decisions for people without their knowledge, or as in this case, have them signing consents for things they don't understand. We're doing them a huge disservice.
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