The Value of Parental Judgment in the Ethical Gray Zone of Periviability: Words Matter

The window of periviability in which a neonate has a reasonable likelihood, but not yet a high probability of surviving without significant morbidities, has shifted over time. The most recent American Academy of Pediatrics (AAP) guidelines for extremely premature birth, while recognizing the imperfection of gestational age as a marker for fetal maturity, considers the window of periviability to be between 22 to 25 weeks’ gestation.1 Below 22 weeks, it is suggested that resuscitation not be offered because of poor outcomes, and at 25 weeks and above, resuscitation should be offered given improved survival and decreasing comorbidities. This leaves a gray zone at 22, 23, and 24 weeks inclusive where clinical outcomes are uncertain.Faced with this uncertainty, guidelines like the AAP’s rightfully state that, “Decisions regarding care of periviable infants should ideally be well informed, ethically sound, consistent within medical teams, and consonant with the parents’ wishes (emphasis added).”1 Although the recognition of the primacy of parental involvement in such a setting seems right, the choice of language may, nevertheless, be problematic and could even work against the guideline’s intended deference to parents. If the goal of antenatal counseling is to inform shared decision-making (SDM), what does the phrase “parental wishes” say about our view of parental authority in that decision-making? Here we discuss how this language may serve to devalue our view of parental judgment, ultimately undermining appropriate use of parental authority.Reference to parental wishes is not unique to the AAP guideline. Among international guidelines in a recent review, we found 10 of 25 (40%) used wishes or preference to describe parental input in SDM.2 Other synonyms for wishes include whim, fancy, inclination, or hope. These are terms more likely to be used to ask, “Do you prefer cream or sugar in your coffee?” How does parental discernment regarding the future life or death of their child summon what might seem a laissez faire vernacular?One explanation may be the misperception that parents are incapable of making a sound decision in the face of myriad barriers to effective periviability counseling. For example, the heterogeneity of reported survival statistics or differences in definitions and testing for neurodevelopmental impairment hinder clear prenatal consultation.1 This pessimistic view, however, seems to undermine the recommendation to engage parents in SDM in the first place. Although undeniably difficult, guidelines rightly endorse that SDM should be used to engage families in periviability discussions.The term wishes may also imply a diminished weight to parental views, which conveys a reductivist view point that what matters most in these decisions is scientific fact, best understood by clinicians, over parental hopes and values. In reality, the most appropriate approach is one where all ethically relevant considerations are balanced and SDM ensures parents are not just informed of the data, but medical teams also elicit parental values. Yet, we see stark contrast between referring to physician judgment as institutional policy versus parental judgment as “parental wishes.” This distinction may be small and unconsciously made; however, we argue it is morally relevant because when medical providers and parents cannot reach agreement about resuscitation decisions, this language may influence how parties perceive who ultimately should be able to make a contested decision.When outcomes are unclear and a decision is contested, the weight of input from all parties involved is vital. Imbalanced language may mistakenly promote an inappropriate power differential in perinatal decision-making. Even with improving accuracy in prognostication, it can never replace human judgment. There remains a wide latitude of human values that may not be shifted by shifting probabilities. “The best one can do in these situations is to make a human judgment based on probabilities.”3 Even if parents have incomplete understanding of neonatal outcome statistics and are influenced by personal values and beliefs, doesn’t their “human judgment” warrant respect at least equal to that of medical providers?Who then has the moral authority to make these decisions in the ethical gray zone? The Canadian Pediatric Society guideline explicitly discusses this issue. “Given the lack of a moral authority regarding standard of care in this complex area, a “nonrecommended” option is sometimes instituted after further informed discussion, time to think, and conflict resolution.”4 Put another way, if a baby is going to be born in the zone of parental discretion where either resuscitation or palliative care is ethically permissible, clinicians may advise parents to choose one course over another, but ultimately parents may choose either option. This position is in keeping with the longstanding bioethical precedent of the right to refuse life-sustaining interventions that are not in a patient’s best-interest.5This is why when parents voice their opinions with the clear intent of conveying a decision, we should refer to those views as parental judgment, especially within the zone of parental discretion. Although we have argued how the term “wishes” diminishes the role of parents in the zone of periviability, it is equally important to recognize that wish might also inappropriately convey a greater authority, as in, “your wish is my command.” Yet, such phrasing that portrays parental input as demands also fails to convey the appropriate tenor of a critical situation that requires prudent judgement. Patients and their surrogates do not have the moral authority to demand life-sustaining interventions known to be ineffective. Thus, providers may have to override parental judgment when outcomes more clearly obligate medical action or inaction. Yet, even in these difficult circumstance parents still have values, fears and wishes worthy of our attention and respect as they inform how we can support families through these hardships.Lastly, the importance of our words extends beyond the private conversations between parents and their clinicians to the realm of public policy. A recent Pediatric Perspectives commented on executive order 13952 and the potential danger of denying newborns the right of having parents act as surrogate decision makers.6 The Supreme Court decision in Dobbs v Jackson Women's Health Organization has led to discussions regarding how the weight of maternal or fetal rights may be scrutinized and possibly lead to reducing the scope of parental authority.7 These cases reflect how our words, through the lens of public policy, have profound impact for health care in our country. Thus, we have a professional duty to be succinct and accurate with our terminology.Simply put, words matter. Neonatology, as a field, must be mindful of how our language may be interpreted. It not only influences how we partner with parents in shared decision-making but communicates far more about the nature of that partnership to our colleagues, the court of public opinion, and the next generation of clinicians. Clinicians and professional bodies that create and support resuscitation thresholds have a responsibility to use appropriate language to describe the role of parents in perinatal decision-making. When parents are extended the right of parental authority, we should refer to their decisions as parental judgment. Failing to do so risks not just suggesting that we should place less weight on the opinions of parents but jeopardizes the right of parents to make decisions on behalf of their extremely preterm newborn in the ethical gray zone of periviability.

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