18 y/o Hispanic female, G1P0, 19 weeks GA. She was advised via telephone of results of penta screen for NTD, Trisomy 18, Trisomy 21 screening. She presents in clinic with her boyfriend, mother, and sister--all in acute distress. Mother of patient does most of the talking. She reports that the patient was advised by a nurse that the test was screened positive for Downs and Edwards syndromes. They are here to get more information and to find out what to do next.
The NP seeing the family explains that the information they have is incorrect. She explains that the screen came back positive for possible neural tube defect, but tests for Trisomy 18 and 21 were negative. She discussed the chances that this pregnancy/fetus might be affected by neural tube problems, she explains what the range of possible malformations are, and further explains what happens next. The information includes the chances that this is a false positive, that this is a screening only. The patient's risk factors are also included in partial reassurance. The family, while still anxious, is able to process the information given, clearly able to state the next course of action, and verbalize understanding of the condition that the screening test indicated.
In summary: The patient was given the wrong test results. She either was not given sufficient counseling prior to testing or was not in complete understanding of the information given. This may have been a function of either her age, maturity, and the care and preparation of the provider doing the consent prior to testing. Reporting of test results of this nature is best handled in person, not over the phone. Having support persons available was helpful.
I chose this case because it was like watching the Hispanic vesion of my daughter and I, and it really showed me that more care and sensitivity needs to be shown in ordering, consenting, and reporting these tests. No matter how careful the person is reporting these results, all the family hears is that something is wrong with their baby. It took 20 minutes just to calm this family down enough for them to be able to truly process the information that was being presented by the NP in person, in a very calm, very clear, very concise manner.
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I agree- information this sensitive should never be revealed over the phone. I, too, am surprised that this family was not counseled better about these screening tests. I have had the priviledge to listen to my preceptor explain in-depth the meaning of these genetic tests and their implications. I can tell after everyone of her patients receives this information they understand completely why these tests are performed, the follow-up care if the tests do come back positive, and most importantly they are aware that all of these screening tests are optional. After listening to my preceptor deliver this important information a few times, I attempted it with some difficulty at first. Naturally, parents become worried even at the thought that their baby could potentially be afflicted with a disorder and they pose some really good questions. Thankfully, I became a little more polished at delivering this information and I had a better feeling that my patients understood exactly what I was trying to get across.
ReplyDeleteCouple things here-first, totally agree that any such results should not be delivered over the telephone, rather should be in person, face-to-face to be able to assess pt understanding of information and response to same and be able to clarify questions/concerns and provide immediate psycho-social support.
ReplyDeleteAlso, an issue here at the Darnall AMC Women's Health Clinic at Fort Hood, TX has been the actions of some non-independent provider staff, such as CNA's (Nursing Assistants), stepping outside of their scope of practice and getting involved in pt care business they should not. Had a CNA interact with a pt who was clearly told by primary care provider (WH NP) she was not a candidate for an IUD due to her hx of previous ectopic pregnancy (she was offered other contraceptives which she accepted to use-and she was deploying in 60 days). CNA told pt as she was leaving clinic "I had 2 ectopics and I have an IUD, you need to get a second opinion". Pt scheduled a second appt with same WH NP and came in 1 week later stating "I was told I could get an IUD, get a second opinion and I am here for it". When reminded she was not an appropriate candidate for an IUD and again explaining the health reasons for same, she was told to go back to the primary health care provider who said she was able to get an IUD and have that provider place it. Pt stated she had talked to the CNA "who had asked a doctor (in another area of the same Women's Health Clinic?), and they both and her Clinic PA said she could get an IUD". Pt was asked who these providers were and she did not know their names, only the CNA's name. Note that this pt had provided false information the week before to the WH NP regarding having a recent miscarriage-she had gone off-post to have an elective abortion and then 24 hrs later went to the on-post ER for "bleeding" to confirm loss of pregnancy (this story would go on more-pt was G8P1, with 7 "miscarriages"-she refused to go to a Genetic Counselor and said she "wanted to put all this behind her"). BLUF-CNA in clinic providing "medical advice" contrary to LIP's advice to pt that caused quite a storm and may still be unresolved.
Finally-as relates to the Hispanic pt-possibly there was cultural/language difficulties in understanding the initial, and subsequent information she/her family was given about the screening and results. I have seen many patients of different cultural backgrounds come in and see a Primary Care Provider and shake their heads/nod indicating "yes" when having things verbally explained to them as well when given written (in English) material (with Spanish and other languages materials unavailable). It takes time and patience and one needs to have the pt/family "brief back" their understanding of what they were told in order to make sure they are not just shaking their heads and really do not understand what they are being told.