In a Pediatrics Perspectives article being early released this month in Pediatrics entitled “Parental and Newborn Rights in Resuscitation Decisions: The Risk of Governmental Overreach,” authors Mercurio et al. highlight an often-overlooked aspect of presidential executive order 13942 signed by President Trump (10.1542/peds.2023-062329). This order mandates that federally funded hospitals provide “lifesaving” care for patients born extremely premature on the premise that some hospitals do not provide stabilizing and lifesaving (without clarifying what “lifesaving” means in the short vs. long-term) care to such patients. The authors make the important point that the input of parents is overlooked in the decision of whether to resuscitate their child. Taken to its extreme, the order could be used to penalize caregivers and hospitals, given the reporting provisions in the order. The authors report that such orders and related legislation have already made some neonatologists feel compelled to resuscitate newborns when they may have recommended otherwise.
The authors make the important point that caregivers can make medical decisions for adults who are older and who have dementia, and caregivers for neonates should be able to make similar decisions on behalf of children in their care. And there are times (eg, whether to resuscitate a child with a known, lethal diagnosis once born) when the decisions that caregivers/parents make should be informed by information often only privy to trained medical specialists (eg, neonatologists). The authors rightly highlight the times when the parents’ decision may not always prevail and when the pediatrician/medical specialist’s decision should prevail (eg, parental refusal to provide an intervention that would improve a health outcome and/or prevent death).
In essence, what the authors rightly highlight is that complex medical decisions cannot routinely be made by simple judicial heuristics (eg, all children born at or above 22 weeks should be resuscitated) and laws. Governmental bodies (and their representatives) don’t always have nor know how to appropriately interpret medical data and risk/benefit ratios when dealing with children. And these bodies have even less facility in dealing with nuanced situations that often occur (eg, children born premature who have vs. do not have other comorbidities and risk factors). Because there is a significant amount of nuance in many clinical decisions, blanket regulations may have the effect of being more restrictive in practice than perhaps intended. As is seen in the abortion regulations being implemented in a number of states, even the presence of exceptions does little to provide abortion access for those who may qualify because many providers are concerned about criminal, civil, and professional punishment for providing potentially life-saving care.
Given how unlikely it is that the executive order will be rescinded, the authors recommend four ways to modify it to prioritize what is best for the patient:
- Allow parents/caregivers to make informed decisions about the health of their child.
- Improve the access to and provision of obstetric and neonatal care.
- Search for systems fixes (to include improvements in access to counseling, evaluation, and treatment) when concerning cases arise.
- Modify and clarify the wording of the order to reduce the likelihood that children born with lethal conditions are not unnecessarily transported to tertiary/quaternary care centers to provide care that neonatologists and pediatricians would deem futile.
Historically, it is rare that the US takes away rights one previously had. However, there have been a number of recent decisions made at the federal and state levels that have rolled back rights people have had for decades. Moving beyond the shock and rightful indignation we may experience in the moment, these authors give us a blueprint of how best to advocate on behalf of our patients in these uncertain times to optimize their care and empower the caregivers. It is time for us to heed that prescient call.