A 2020 Executive Order That Threatens Progress in Shared Decision-Making

On September 25, 2020, the Trump Administration released an executive order entitled “Executive Order on Protecting Vulnerable Newborn and Infant Children.” This order notes that “Every infant born alive, no matter the circumstances of his or her birth, has the same dignity and the same rights as every other individual and is entitled to the same protections under Federal law” and echoes the “Baby Doe regulations” of the 1980s and the Born-Alive Infants Protection Act of 2002. Although this may seem uncontroversial, the order is the latest in a long history of US Federal attempts to intervene in medical decision-making for newborns. The Biden administration faces a great number of challenges that will require their attention. Given a global pandemic, financial crisis, and threats to the Affordable Care Act (including coverage for preexisting conditions), it may be tempting to view this order as unworthy of our focus, as a vestige of the previous administration with little significance. Yet, this would be a mistake. Although previous acts and orders have largely remained “strikingly detached from normative perinatal and neonatal practice,”¹  the 2020 order raises new concerns. Left unattended, the 2020 Executive Order on Protecting Vulnerable Newborn and Infant Children could result in increased federal constraint on medical decision-making for children. This could undermine decades of progress and risks impacting children and their families. As a medical community, we must urge President Biden to revoke it, and we should remain aware of the risks that can arise from similar acts and orders on the local, state, and federal level, now and in the future.

To begin with, in the 2020 order, emotionally laden language is used to portray the relationship between families and the medical team as adversarial. It describes hospitals that “refuse to provide treatment” and the “denial” of treatment and “discouragement of parents” by the medical team, “even when parents plead for such treatment.” This description is at odds with the strong commitment within Pediatrics to shared decision-making and family-centered care. Additionally, the 2020 order refers specifically to emerging data around the care of preterm infants. In the order, it is stated that “Active treatment of extremely premature infants has... been shown to improve their survival rates.” This represents a departure from previous acts and orders, which do not comment on the prognosis for particular conditions. More importantly, this reduces the complex and nuanced discussion of the outcomes of prematurity to a single sentence and single outcome: mortality.

The most concerning element of the 2020 order is that it appears to directly oppose decision-making on the basis of an infant’s interests. For decades, the American Academy of Pediatrics (AAP) has consistently defended decision-making on the basis of the interests of the child. For example, in response to the Baby Doe regulations (which reside in the Child Abuse Prevention and Treatment Act [CAPTA] amendment of 1984) The AAP Committee on Bioethics noted that “medically provided nutrition and hydration are ‘appropriate’ when they serve the interests of the child—in other words, when they are expected to offer a level of benefit to the child that exceeds the potential burden to the child.”²  The 2020 order appears to directly refute such a position and diminish the import of the interests of the child. In the order, it is noted that “Hospitals might refuse to provide treatment to extremely premature infants... because they believe these infants may not survive, may have to live with long-term disabilities, or may have a quality of life deemed to be inadequate” and stated that withholding treatment on this basis may be a violation of Federal law. Consideration of mortality, morbidity, and anticipated quality of life form the basis of an assessment of the child’s interests, and appropriate decision-making for children (as supported by the AAP) rests on these elements. The order goes beyond a requirement for screening and stabilization, endorsing “active treatment,” promoting transfer to a “more suitable facility,” and noting that the individuals responsible “may not unlawfully discourage parents from seeking medical treatment for their infant child solely because of their infant child’s disability.” When combined with the emotional tenor of the order’s language, this may diminish clinicians’ willingness to recommend comfort-focused care or to withhold inappropriate therapies. Additionally, the order may be used by future courts to further intervene in clinical care. A telling example is Montalvo v Borkovec (2002),³  in which decades-old provisions in CAPTA were used to diminish the parental role in shared decision-making.

It should be recognized that the 2020 executive order follows a long line of regulatory actions, including CAPTA and the Born-Alive Infants Protection Act of 2002, that have historically been closely connected with the prolife political movement.^1,4  These measures have sought to extend government influence on decision-making for infants in the perinatal environment (in which there are already laws recognizing infants as persons and prohibiting homicide), as a means to extend government influence on decision-making for women in the prenatal environment.⁴ 

Medical care has come far in the decades since the Baby Doe regulations. Clinical practice has evolved to advance shared decision-making with parents on the basis of the interests of the child. When this private decision-making sphere is insufficient and conflicts arise, that sphere is widened to include hospital ethics committees, which were developed in response to the Baby Doe regulations of the 1980s.⁵  The 2020 “Executive Order on Protecting Vulnerable Newborn and Infant Children” risks undermining these decades of progress. Although it may pass quickly from view with little effect on clinical care, it certainly holds the potential to impair shared decision-making for newborns and mandate treatments not in their interests. The medical community should urge President Biden to revoke this executive order. In addition, the medical community must remain alert for any future orders, regulations, and legislation that may impair our ability to engage in shared decision-making with patients and their families.

AAP

American Academy of Pediatrics

CAPTA

Child Abuse Prevention and Treatment Act