Reflections and Reactions from Readers of the Medical Humanities Report

InkLinks is a regular column for readers’ responses. This month, three readers respond to the lead article about the darker face of prenatal screening. If you would like to carry on the conversation, please drop us a line. We also welcome your responses to articles in past issues, and in general your thoughts, hopes, projects, and reflections.

--JA

A New Mother: As if Screening Could Make the Womb a Safer Place

When I was pregnant with Kepler, I decided not to do a sonogram. Counterintuitive as it seems, apparently sonograms do not improve fetal or maternal outcomes in medically uneventful pregnancies. I was having a medically uneventful pregnancy. Our midwife, Meta Bray, was fine with this. But one day, as I was checking out of the OB office where Meta worked at the time, the receptionist who was scheduling my next appointment told me I should also schedule my sonogram. I told her we had decided not to do one. Her response was a look of shock and the declaration, "I'll have to talk to Meta about that!"

Many people, medical and otherwise, had a similar reaction: that it shouldn't really be my choice, or maybe that I was a crazy luddite. People kept demanding, "But isn't it better to be safe?", as if the sonogram would make the womb a safer place for Kepler. Ruth Hubbard, in her recent
visit to MSU, reminded us that besides considering the risks and benefits of technologies we should also think about the burdens. Natalie Angier and others have shown the burdens of sonograms, especially on the developing mother-child relationship, are substantial. But unquantifiable, they are often ignored.

In the past, I worked in multiple capacities towards educating women about different facets of the childbearing year (pregnancy, labor, delivery, postpartum). During this tenure I was education coordinator at a clinic, and it was at this time that the AFP neural tube defect screening test was introduced through a spirited marketing campaign. At a clinic inservice, an enthusiastic diagnostic company rep described the simple new blood screen that provided impressively rapid results. Carefully relegated to the end of the inservice was information on the high rate of false positives. A positive reading would then necessarily need to be followed up with another test, a very accurate (but more invasive) amniocentesis. We were reminded that a woman would be well into the second trimester of pregnancy when the results of the amniocentesis would be available.

I later had my first clinical encounter with a woman receiving news of a positive AFP screen. As a consequence of that test result, the woman faced a dilemma presented by the recommended follow up amniocentesis. Abortion was not an option for her. Moreover, she felt certain that the test was wrong and that her baby was unaffected by the list of neural tube defect possibilities presented in the literature. Her partner, the father of the baby, felt equally certain of the veracity of the test results, and he desperately wanted her to undergo amniocentesis to confirm his worst fears. Armed with this evidence, he hoped that he might then successfully convince her to end the ill-fated pregnancy. This couple's shared anguish lingered until she later gave birth to a healthy baby.

Their personal agony caused me to ponder the experiential content missing from that original AFP inservice. How might that enthusiastic marketing rep have conveyed the depth of human suffering associated with the simple, rapid result, AFP screen? Was this couple's experience located somewhere in those emotionally sterile charts and graphs presented? The introduction of additional testing is commonly viewed as an unqualified good. If it can be known, it should be known. Isn't it better to know more?

As a family physician and a family practice residency educator, I have discussions with my patients or with residents on a daily basis regarding the indications or need for screening labs, x-rays,
or ultrasounds.

Women come into a physician's office with a variety of expectations regarding screening tests. Some come with a very clear understanding of the pros and cons of a test and expect to have a conversation, which clarifies their current understanding. Some come with very little knowledge about the test(s) and want to know more, and some come asking for a test because it was recommended by a friend or family member, but they do not know anything about the test or the pros and cons related to the test.

Physicians and others involved in providing health education to patients have an obligation to engage in ethical decision making with our patients and/or family members. In particular, women who are receiving prenatal care will have a variety of prenatal screening tests offered to them. I think that how conversations occur between the woman and her clinician is of critical importance.

First, although as physicians, we are obligated to inform pregnant women of the avail-ability of various prenatal screening tests (chorionic villi sampling, the triple test, amniocentesis, etc.), we have not completed our ethical obligations by merely informing her that the tests exist.

All tests can cause harm as well as benefits for the patient. Women need to know what the balance of the benefit/harm ratio is for her in the particular setting of her current pregnancy. For instance, if she is pregnant for the first time, is less than 30 years of age, and has a very healthy family history and personal health history, her chances of having a pregnancy with a complication including a significant birth defect are very small. In this setting, it may cause her more harm (false positives) by having a screening triple test rather than declining it.

It is important for the woman to know what the nature of the test is and who will benefit most from having the test performed. In the example above, she would have more of a chance of having a false positive result. This would then entail either obtaining a level 2 or 3 ultrasound or an amniocentesis depending upon the exact results of the triple test. Both situations would minimally cause significant emotional stress for the woman and her family and if she had an amnio, she would be exposed to other risks related to the amnio procedure, including a 1:100 to 1:200 chance of losing the pregnancy.

Given this context, it is important to remember that screening tests are designed to identify those at highest risk for a disease or condition. As physicians or clinicians, we are obligated to have a conversation with our low-risk patients regarding the nature of the screening test and the likelihood of risks and harms vs. benefits for her and her fetus. On balance, for most low-risk pregnant women, the risk of the test is the false positive result. This will then "obligate" most physicians and women to proceed with further testing which has even higher risks and harms associated with them.

Secondly, we as physicians and clinicians need to hear why the woman wants to have the test performed. Her story, her personal understandings need to be heard by the professional providing her care. Some women have had many friends whose pregnancies were complicated by genetic illnesses; for their own peace of mind, they want to have the screening test(s) performed. Other women want to decline the test(s) because if they knew that they had a fetus with a significant illness ahead of time, it would cause such emotional distress that they would have emotional difficulties throughout the remainder of the pregnancy. They would opt to not know now and would rather "deal with the situation at the time of birth." Still others would want to have the test(s) performed because if a significant genetic illness were diagnosed, they would opt for abortion.

In summary, it is my ethical obligation to have a conversation with my patients who are pregnant regarding appropriate screening tests. On my part, I need to listen carefully and respectfully to the request of the woman and her reasons for the request or denial for the testing. It is my obligation to be sure that she has the information she needs to make an informed decision. Part of this discussion must include information regarding the consequences of beginning the screening program.