Ch. 3, Part 4: Mandatory abortion counseling; the “Gradual Trap” of prenatal testing; &, 90% termination rate

Part 4 of Chapter 3 of the book covers the professional guidelines mandating practitioners counsel women about abortion following a positive prenatal diagnosis for Down syndrome; the “Gradual Trap” of how prenatal testing is administered; and, the pushback on the 90% termination rate following prenatal diagnosis by individual physicians at presentations I gave.

This hitching of abortion to prenatal testing is so ingrained in the medical culture that ACOG had to affirmatively state in the 2007 guidelines that: “Prenatal diagnosis is not performed solely for assistance in the decision of pregnancy termination. … Nondirective counseling before prenatal diagnostic testing does not require a patient to commit to pregnancy termination if the result is abnormal.” This instruction would not be considered necessary if some practitioners were not doing exactly that: requiring their patients to commit to abortion if they accepted prenatal testing.

Notwithstanding, in the same practice guideline, ACOG used language that effectively makes counseling about abortion mandatory in the eyes of the law. According to ACOG’s guidelines, after a prenatal diagnosis, “[t]he option of pregnancy termination also should be discussed.” The use of “should” makes such counseling obligatory in the eyes of the law. Failure to do so will satisfy the first two elements of there being a duty and a breach of that duty if the practitioner fails to counsel about abortion following a prenatal diagnosis.

What is the impact of this obligatory counseling after not being reassured but instead receiving unexpected news, that the pregnancy can be terminated, but the time for that will be closing, particularly if the mother is receiving the diagnosis from an amnio? Not surprisingly, it is the option most selected. This is what has been described by some researchers as the “Gradual Trap” of prenatal testing:

• An expectant mother is offered prenatal screening.
• She accepts seeking reassurance that her pregnancy is “healthy.”
• The screen result comes back with an increased chance for Down syndrome, an unexpected result.
• She is offered diagnostic testing, which might provide reassurance that the screen result is a false positive, and so, the expectant mom accepts.
• The diagnostic testing confirms the screen result; her pregnancy is positive for Down syndrome.
• Then, and only then, is she counseled about the option of terminating her pregnancy and that that option is time limited, sometimes having only a few weeks before it will be foreclosed to her.

Medical practitioners can somewhat be excused for participating in this trap. Reading the practice guidelines, none of them address what key points should be discussed when counseling a patient about whether she would want to have prenatal testing. The instruction to counsel about termination does not appear in the guidelines until after a diagnosis is reported. Therefore, physicians, following the guidelines, may not mention it until after a diagnosis is delivered and the availability of abortion is closing. This is particularly in the case of an amnio, which cannot be performed until the 15th week and the full results may not be returned until the 17th week or later. If the patient lives in a state with a 20-week limit on when abortion is available, there is not much time to make a life-changing decision.

The entire prenatal testing process, then, creates inertia once the ball is set in motion to accept it. Momentum builds to have more and more testing to either seek reassurance or confirmation, and then, after receiving one unexpected report after another, with time being limited, an expected mother and partner are told they can terminate their pregnancy, but they need to make that decision soon.

How often women choose to terminate following a prenatal diagnosis has been a point of consternation, particularly amongst medical professionals.

When ACOG changed the standard in 2007, the statistic regularly quoted at that time was that 90% of women terminated after receiving a prenatal diagnosis for Down syndrome. The ACOG guidelines and the following news coverage occurred just one month before the first ever Affiliates in Action (“AIA”) conference held in Kansas City, Missouri. Sixty-three leaders of local Down syndrome support organizations from around the United States came together to address the state of Down syndrome advocacy and the priorities for their organizations and the community in general. There was discussion about the need to fully fund and advocate for inclusive education, to develop respectful work opportunities for adults, and to find a way to keep families connected to the support organization during the school-age years. All of these were worthy and justified needs. Having listened to the discussion of priorities, I raised my hand to offer my thoughts.

While traveling to the conference, I read the guidelines and the quoted termination rate. I did the math that if 90% of mothers following a prenatal diagnosis of Down syndrome aborted their pregnancies, and now all women were to be offered prenatal testing, well, if that rate remained, then Juliet and those like her were quickly going to become even rarer in society. I suggested that the top priority of our organizations should be reaching out to support expectant mothers and working with medical professionals to improve the accuracy of information patients receive after a diagnosis … or else, our organizations wouldn’t have enough members within a few generations to organize and advocate for any other priority.

That moment was what launched me on my on-going work towards that priority (of which this book is one of them). From that first AIA conference, I would go on to exhibit that Spring at the ACOG annual meeting, present to the Down Syndrome Association of Greater Cincinnati, attend my first ever National Down Syndrome Congress Annual Conference, and on and on to attending and presenting at dozens of conferences and meetings. The organizer of that first AIA conference, Amy Allison, dubbed me “ACOG Man” for my one-note gong focus on the issue of medical outreach and new and expectant parent support.

I became a regular presenter at AIA, NDSC, and other Down syndrome and then, increasingly, medical conferences. In making my case for why families and physicians needed to support efforts to develop and deliver accurate printed information about a life with Down syndrome, I would set the hook by highlighting the 90% termination rate.

In 2011, I presented at the annual conference for the South Atlantic Association of Obstetricians & Gynecologists (“SAAOG” phonetically “say-OG”). SAAOG is made up of members from what I termed the Atlantic Coast Conference states, from Virginia on down the Atlantic Coast to Florida. That year, the conference was held at The Homestead in Hot Springs, Virginia. The Homestead is one of the classic retreats, where many Presidents and dignitaries visited, particularly in the summer before air conditioning became ubiquitous in Washington, D.C., given the resort’s location in the Blue Ridge Mountains. It is located near the site of natural hot springs that have been a source of rejuvenation since the time of Thomas Jefferson, himself a frequent visitor. After giving my spiel and answering some questions from the audience, I stepped down from the dais with a scheduled break in the program following. One by one, several of the obstetricians came up to me, and in hushed tones, said, “I know that 90% rate is what’s quoted, but I just don’t see it at my practice.”

This response became a regular one whenever I presented to a medical conference: at ACMG in Albuquerque in 2008, at a bioethics conference at Estes Park in 2010 (held at the Hotel that inspired Stephen King’s “The Shining”), at a presentation in 2011 at the University of Louisville, at the ISPD conference in 2012 in Miami, Florida. In 2009, I presented a poster at the joint conference for the Royal College of Obstetricians and Gynecologists (“RCOG”) and the Society of Obstetricians & Gynecologists (“SOGC,” both of which organizations refer to themselves by saying each letter and NOT “ARR-cog” or “sog-SEE,” as an attendee helpfully corrected me). And like thunder follows lightning, after an attendee read the 90% figure on my poster, he straightened his back and said, “I don’t see anywhere near that many terminations.” He then told me he operates an overtly pro-life obstetrics practice. I was not surprised that he did not see a 90% termination rate amongst his patients.

The next section will delve into what the “real” termination rate is, and what that rate really means.