By Jacob Dalke, MS-Bioethics

Mr. Dahlke, clinical ethicist at Nebraska Medicine in Omaha, is a 2012 graduate of The Bioethics Program.

I have an interesting history with the Amish community. I was homeschooled for three years in grade school, while living in SE Iowa. My mother, in addition to her primary work as a maternist (caring full time for me and my siblings), was also a midwife, with close ties to an Amish community near us. Since I was at home with her, I would travel with her on her prenatal visits to the community, and would often help the men with chores. Granted, I was under ten years old during this time, so perhaps my “help” was a bit … ineffectual. I know this: I look back on that time fondly, and I feel a particular connection to Amish communities whenever I encounter them, whether in Iowa, Missouri, or Vermont. But this post isn’t really about me or my feelings toward the Amish. Instead, consider the following:

A 43 year old pregnant woman (“Mrs. A”, not associated with her real name) is admitted to a rural hospital, with increased blood pressure and heart rate. She is found to have severe preeclampsia and preterm premature rupture of her membranes (known as PPROM). These two conditions can lead to inadequate blood supply to the placenta, and in severe cases can lead to death for both mother and fetus. Mrs. A’s pregnancy was estimated at the time to be a bit before 25 weeks – extremely premature, and right on the edge of what is commonly referred to as viability—the point at which a baby, if delivered, has a high enough statistical chance of survival that full measures for resuscitation are typically deemed appropriate. Mrs. A has no known primary care physician, and had not sought any prenatal care prior to this admission. Upon admission, Mrs. A and her husband, consistent with their religious and cultural (Amish) beliefs, indicate that they do not want resuscitative measures for the baby upon delivery. How ought the medical team respond?

Patient autonomy is a well-established principle in both U.S. law and Western medical ethics. When patients have decision making capacity, they decide to accept or decline medical interventions based on of their own goals and values. When medical decisions are made on behalf of children, the best interests standard replaces autonomy. Because children usually lack settled goals and values, the decision about medical care should be made in light of the best decision for the child. Within the context of early pregnancy, the mother’s autonomous preferences are legally recognized as sufficient to make decisions to continue or to terminate the pregnancy. Once the fetus reaches the stage of viability, however, things get a bit more complicated. Viability is difficult to clearly define as it considers complicated criteria such as estimated gestational age, fetal sex, and when or whether some interventions had already been provided. Common practice guidelines recommend against resuscitation efforts for a fetus delivered before 23 weeks gestational age, as it is not typically considered in the best interests of the fetus. Fetuses born after 25 weeks are generally thought to have a high enough chance of survival to recommend resuscitation evaluation and treatment. A delivery that occurs between 23 and 25 weeks is in a “grey” zone where the parental judgment is given greater latitude about what counts as the best interests of the fetus. 

In this case, Mrs. A’s capacity to request limited treatment upon delivery was not questioned, as it was backed up by both past decisions (from her previous pregnancies) and by her religious and cultural perspectives. From the physician’s perspective, there is nothing in this case to suggest the request is unreasonable. And yet, it would also be prudent to continue to continue the conversation with the mater to ensure an adequately informed decision on the part of the mother. For example, a more accurate determination of the fetus’ gestational age should be sought because the approximated age falls in the “grey” zone between 23 and 25 weeks. Finally, further discussion with the parents (which was scheduled to happen after this consult) could further illuminate their goals and values, as well as provide them with a better understanding of this particular medical situation and its likely outcomes.

Unfortunately, there was inadequate time for these conversations before delivery. And, in the moments after delivery (via C-section), the medical team chose to resuscitate the baby, overriding the parents’ request to allow for a “natural” course of actions. Additionally, the hospital filed a report with Child Protective Services, which served two purposes. First, it functioned to compel the parents to accept the medical interventions for the baby. Second, it also served to facilitate the transfer of the baby to a bigger hospital that could manage such a uniquely critical infant.

At this point some questions emerge: why was the parents’ decision was overridden, and how might this serve the best interests of the premature infant? And perhaps more importantly, should this kind of decision be taken out of the hands of parents in general?

The medical team’s decision to override the mother’s clearly articulated judgment requires some justification. There is a well-known predisposition toward treatment in medical practice and that may be in play here. The medical team knew their involvement in the case would be short, as the infant and mother would be transferred almost immediately. As noted, they also had no obvious reasons to doubt the validity of the mother’s judgment in this case. In that sense, then, the medical team’s justification for overriding the mother’s judgment were ineffectual. Their involvement was so brief, and their potential role in the care of the infant so unlikely, that much more is needed to justify their decision to override the family’s stated preference. Further, they set aside this particular family’s values and how they might care for this infant for whom they were expecting to mourn. The medical team had limited to no insight into how the family’s community’s would receive the infant, or provide the resources to care for it. Their considerations were only for the duration of the encounter, from delivery to transfer. Even if the infant were to survive and leave the hospital, the medical team-as-decision-maker remained ignorant of what it might mean for a child who lives in an Amish community with Amish parents. This incongruence makes it difficult to justify their overriding judgment about what was in the child’s interests. This case, then, supports the notion that families often remain the most qualified to define the infant’s interests, and to make decisions on her behalf.

In the end, the parents decided to accept the medical interventions and transfer. Mr. and Mrs. A were preparing to cope with something they were all too familiar with: mourning the loss of an infant child. Instead, the hospital compelled them to cope with something else entirely.

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One thought on “Horse-drawn miscarriage: a case study on culture, pregnancy, and overriding parental requests to limit treatments”

  1. You are not the average blog writer, man. You certainly have something powerful to contribute to the World Wide Web. Such a outstanding blog. Ill come back again for more.

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