No doubt the challenges to making appropriate care and information available to women facing illness and pregnancy are many. There are huge information gaps; the information we have is fractured and often hard to interpret; research with pregnant women is scientifically and ethically complex; and law and policy raise daunting barriers to conducting needed studies.
Yet in my work on these areas, what has consistently emerged as the most important challenge is a cultural one, namely a deep discomfort with risk and the pregnant body.
That risk and pregnancy strike us as a dangerous combination is hardly a surprise. Pregnancy often brings with it a deluge of advice about things to avoid in the name of safety, ranging from caffeine to sushi to medication once deemed necessary, even critical to non-pregnant health. Even when evidence of harm is weak or theoretical, “better safe than sorry” emerges as a well-worn mantra.
Misfearing and greater risks
The problem is that this way of thinking has paradoxically put women and children at greater risk. It is a form of “misfearing” – a term coined by legal scholar Cass Sunstein, for the human tendency to fear instinctively rather than factually (and recently suggested by cardiologist Lisa Rosenbaum as an explanation for women’s fear of breast cancer over heart disease, though the latter is a greater threat). Pregnancy takes misfearing to a whole new level.
Why should medication use during pregnancy be taboo? It is widely known that pregnancy is no magic bullet against medical illness. An estimated 10% of women face serious medical conditions that require treatment during pregnancy – hypertension, heart disease, bleeding and clotting disorders, depression, cancer. If women take medications during pregnancy (and they do) it is largely because they are necessary for their health, and that of their children. Indeed, untreated illness can present far greater risks than those posed by medications. Instincts tell us that in pregnancy, medications are dangerous. Yet often the facts point to untreated disease. All too often, our “misfears” about medication use end up putting women and their children in harm’s way.
Making matters worse is another cultural tendency, dubbed a “quixotic quest” to eliminate fetal risk. Recommendations to eschew medication (or avoid pregnancy altogether) reflect the notion that no fetal risk is acceptable, no matter how small and no matter the consequences to women or families. Yet life (pregnancy included) brings with it an irreducible element of risk, and reasoning well about risk trade-offs is key to ensuring appropriate, patient-centered care. And it certainly doesn’t end with a post-partum visit: any parent can tell you that risk trade-offs are part and parcel of raising the children we love.
No doubt, shifting cultural tendencies is a tall order. So what can be done? First and foremost, if we want to help pregnant women and health care providers move toward fact-based care, we’re going to have to do better with the facts.
Part of the task will be making sure information that already exists is organized and accessible to all who need it. And part of the task will be to garner needed information through ethically responsible research involving pregnant women.