The Seeds of Doubt: Medicine and Uncertainty

Recently, I asked my students to talk about vaccination.  I think the medical establishment has succeeded in finally getting the word out that the anti-vaccine movement really has no scientific merit, and that their claims can be traced back to discredited research.  As a result, almost all of my students said they would vaccinate along the regular schedule.

The funny thing is, my partner and I wound up in a situation that – for social reasons – led us to seriously consider avoiding at least some vaccination during pregnancy.  It’s an illustrative incident of a wider problem with medicine and the messaging doctors engage in, and shows part of why the public was so willing to accept the anti-vaccine message.

We (I’m going to keep saying “we” here, because we were both involved in the decisions, etc., but of course I wasn’t carrying a baby) were a couple of months pregnant in 2012, when the anti-vaccine movement was just past its apex, but when there was still a lot of public concern about vaccination.  In fact, there was enough that people had been refusing whooping cough vaccinations for their children, and as a result, a bunch of newborns had died in the nursery at a couple of hospitals in California.

As a result of the deaths in the hospitals, the CDC recommended that all pregnant women receive the Tdap vacciene.  Before this time, it was not recommended that women receive this vaccine while pregnant, basically because no one really knew whether it would be harmful, and herd immunity had been protecting newborns from the diseases.  Weighing the relative risks of newborn deaths against the unknown but relatively unlikely chance of harm to pregnant women or developing fetuses, the doctors made the recommendation that all pregnant women get vaccinated in the third trimester.  All of this happened while my partner was in her first or second trimester.  So, while she was in the midst of her pregnancy, the recommendation went from “Definitely don’t vaccinate any pregnant women,” to “Definitely DO vaccinate all pregnant women.”

This recommendation is perfectly reasonable from a statistical perspective.  There is no evidence that the vaccine is harmful, and there is a relatively large risk of enormous tragedy resulting from a failure to protect newborns.  The recommendation probably is the only reasonable thing to do, given the risks and options.  For us, the trouble is with how this was presented to us.

My partner and I are unusual – we’re highly educated, with a background in statistics and scientific research, and access to journal databases that allow us to directly read research that most patients would probably rely on their doctors to read and interpret for them.  Moreover, because of our areas of expertise, we are particularly attuned to the problems in the scientific process, and the way that social context can influence the science that underlies medical recommendations and practices.  In other words, we have more reason than most to be leery of sudden changes in medical recommendations that are related to politically charged issues.

We may even have read this article summary, in which it’s noted that among 128 women who had been vaccinated during pregnancy, about 16% had spontaneously terminated (miscarried).  Despite this, the authors summarize their findings by saying that there is no evidence of “concerning patterns in maternal, infant, or fetal outcomes.”  That many spontaneous terminations seems like a lot, but only out of context.  That’s because in the full article, they describe this as being within the expected rate of spontaneous termination for pregnant women in general (about 15-20% of pregnancies spontaneously abort in the general population).  It’s possible we only read the summary, and so didn’t have the context to correctly interpret that percentage.

We had already read a lot about pregnancy and vaccination (we were definitely not anti-vaccine).  Like all people waiting in anticipation of delivering our child (especially our first), we harbored deep-seated anxiety about the possibility of something going wrong.  So, we went in to see our OB/GYN, and had an exchange that went something like this (I’m paraphrasing from memory, so the words aren’t perfectly right here, but I think they are pretty close):

OB/GYN: You’re going to get the Tdap.

Amanda: Yes, I wanted to ask about that, because I know that the recommendation used to be that pregnant women should not be given it, and now we’re supposed to get it, why is that?

OB/GYN: Because the CDC recommended it.

Amanda: Yes, but why did the recommendation change?

OB/GYN: There was an outbreak of whooping cough in a hospital in California, and 12 newborns died, so we need to protect them by giving them the antibodies through mom.

Amanda: Ok, so what I’m curious about is whether any research shows that this is safe for women and the developing babies, or-

OB/GYN: Vaccines aren’t dangerous.

Amanda: Ok, but is there any evidence of that or is it just assumed?

OB/GYN: So I bet you’ve been reading all kinds of research.  Vaccines are safe.

Amanda: I know that they are generally, but it’s just that no one really knows what introducing those viruses-

OB/GYN: Pertussis isn’t a virus.

Amanda: Ok…

OB/GYN: It won’t harm the baby.  Pregnant women can get chemotherapy during the third trimester, and it doesn’t hurt the baby.  The baby will be fine.

Amanda: Ok, but…

OB/GYN: The CDC recommends that you get the vaccine.  You’ll get the Tdap in your third trimester, and you’ll be fine.

The doctor’s tone was commanding, defensive, belittling, and condescending.  He really had no interest in listening to our specific concerns, explaining the process of medical decision making, why the CDC thought the risk to pregnant women was small, or what the relative risks actually were for pregnant women being vaccinated.

It was at this point that both Amanda and I decided that we couldn’t work with this doctor anymore, told him, “Ok, we’ll talk about it in a couple of months,” and then switched doctors to someone we absolutely loved.

Here is the thing: we ended up getting vaccinated.  Our new doctor was also pregnant, and she said she was getting the vaccine.  While this wasn’t evidence, it did build faith.  She also helped us to understand that the old recommendation was made because of the reasons outlined above: no one really knew what would happen, so why take any risk if the likelihood of a baby getting pertussis was essentially zero?  But, despite the fact that no one really knew what would happen, she said, there really wasn’t any reason to expect any dangerous side effects.  The vaccine had been given to non-pregnant people for a long time, and in the third trimester, it wasn’t likely that it would cause any change or difficulty in the baby.  She probably had read the study I mentioned above that found it to be safe for pregnant women and developing fetuses.

This exchange wasn’t very different in terms of the information that she delivered to us from the exchange we had with our first OB, but it it was strikingly different in tone.  She was willing to listen and explain rather than command.  She acknowledged the sudden change in recommendation might appear startling, but that really it represented only a slight shift in actual risk.  She spoke to us with respect rather than contempt.  This difference in the social level of the interaction was critical to her success in getting our cooperation for achieving the best medical outcomes.

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