Perinatal Counseling at the Margin of Gestational Viability: Where We’ve Been, Where We’re Going, and How to Navigate a Path Forward

Abstract

The year 2020 marked 60 years since the term “neonatologist” was first used, in which time the field of neonatology has seen remarkable improvements in the survival of extremely preterm neonates.1Manley B.J. Doyle L.W. Davies M.W. Davis P.G. Fifty years in neonatology.J Paediatr Child Health. 2015; 51: 118-121Crossref PubMed Scopus (15) Google Scholar Advancements including antenatal steroids, improvements in nutrition (enteral and parenteral), and the use of surfactant and advanced ventilation strategies for infants born preterm have greatly impacted our ability to successfully resuscitate infants born even smaller and more prematurely.2Mercer B.M. Periviable birth and the shifting limit of viability.Clin Perinatol. 2017; 44: 283-286Abstract Full Text Full Text PDF PubMed Scopus (15) Google Scholar More recent advancements, including the development of “small baby units” designed to standardize and optimize care, have contributed to continued trends in improved survival of infants born as early as 22 to 23 weeks within the most recent decades.2Mercer B.M. Periviable birth and the shifting limit of viability.Clin Perinatol. 2017; 44: 283-286Abstract Full Text Full Text PDF PubMed Scopus (15) Google Scholar, 3Nankervis C.A. Martin E.M. Crane M.L. Samson K.S. Welty S.E. Nelin L.D. Implementation of a multidisciplinary guideline-driven approach to the care of the extremely premature infant improved hospital outcomes.Acta Paediatr. 2010; 99: 188-193PubMed Google Scholar, 4Watkins P.L. Dagle J.M. Bell E.F. Colaizy T.T. Outcomes at 18 to 22 months of corrected age for infants born at 22 to 25 weeks of gestation in a center practicing active management.J Pediatr. 2020; 217: 52-8 e1Abstract Full Text Full Text PDF PubMed Scopus (48) Google Scholar, 5Younge N. Goldstein R.F. Bann C.M. Hintz S.R. Patel R.M. Smith P.B. et al.Survival and neurodevelopmental outcomes among periviable infants.N Engl J Med. 2017; 376: 617-628Crossref PubMed Scopus (274) Google Scholar Yet along with these successes there remains much uncertainty about the potential for death, survival, or survival with neurodevelopmental impairment or complex medical needs for infants with extreme prematurity, especially at the “threshold of viability,” currently defined as born at or before 25 weeks of gestation or with birth weights of less than 750 g.2Mercer B.M. Periviable birth and the shifting limit of viability.Clin Perinatol. 2017; 44: 283-286Abstract Full Text Full Text PDF PubMed Scopus (15) Google Scholar Given this uncertainty, there is no singularly correct approach to the management of an infant born at less than 25 weeks, and resuscitation practices for infants with extreme prematurity vary widely.6Rysavy M.A. Li L. Bell E.F. Das A. Hintz S.R. Stoll B.J. et al.Between-hospital variation in treatment and outcomes in extremely preterm infants.N Engl J Med. 2015; 372: 1801-1811Crossref PubMed Scopus (408) Google Scholar When approaching counseling and management at delivery of these newborns, most professional associations advocate for a model of shared decision-making (SDM), in which clinicians and parents exchange information to make the best decision for each individual patient and family. Taking parents through this process, although recommended, is difficult for both clinicians and parents, particularly when it comes to conversations about treatment goals for infants with extreme prematurity; good intentions do not always prevent inconsistency and dissatisfaction. Furthermore, as newer and more technologically innovative interventions, including the artificial placenta, appear on the horizon for management of infants with extreme prematurity, clinicians and parents will continue to make decisions in ethical “gray zones,” in which reasonable people can disagree.7Partridge E.A. Davey M.G. Hornick M.A. McGovern P.E. Mejaddam A.Y. Vrecenak J.D. et al.Corrigendum: an extra-uterine system to physiologically support the extreme premature lamb.Nat Commun. 2017; 8: 15794Crossref PubMed Scopus (0) Google Scholar The purpose of this Commentary is to support clinicians seeking consistent strategies for counseling and SDM in the gray zone by exploring the moral and practical dimensions at the margin of gestational viability, with an emphasis on contemporary normative and empirical work. We focus on the resuscitation of infants with extreme prematurity in high-resource settings; extensive exploration of the moral landscape of decision-making for preterm infants born in low-resource settings is equally important, but beyond the scope of this brief review. Presently in the US, infants born at less than 22 weeks of gestation are virtually never resuscitated at delivery, whereas infants born at 25 weeks or older, in the absence of other serious congenital anomalies, are virtually always resuscitated and brought to the neonatal intensive care unit (NICU) at birth.6Rysavy M.A. Li L. Bell E.F. Das A. Hintz S.R. Stoll B.J. et al.Between-hospital variation in treatment and outcomes in extremely preterm infants.N Engl J Med. 2015; 372: 1801-1811Crossref PubMed Scopus (408) Google Scholar However, global variation around the margin of gestational viability exists. In a review study of 47 developed countries in 2015 (including countries in Europe, North and South America, Japan, Singapore, Australia, and New Zealand), no country recommended intensive care at 22 weeks (although some endorsed a model of following individualized decision-making or parental wishes) and no country recommended comfort care at delivery for infants born at 25 weeks or older, although there was wide variation at 23 and 24 weeks.8Guillen U. Weiss E.M. Munson D. Maton P. Jefferies A. Norman M. et al.Guidelines for the management of extremely premature deliveries: a systematic review.Pediatrics. 2015; 136: 343-350Crossref PubMed Scopus (133) Google Scholar In the Philippines, intensive care at delivery is usually not considered at less than 24-25 weeks of gestation and not generally always provided until more than 27-28 weeks, reflecting the reality of ventilator shortages and other resource limitations.9Hayden D. Villanueva-Uy M.E. Mendoza M.K. Wilkinson D. Resuscitation of preterm infants in the Philippines: a national survey of resources and practice.Arch Dis Child Fetal Neonatal Ed. 2020; 105: 209-214Crossref PubMed Scopus (5) Google Scholar Other low-income countries, some of which have the highest preterm birthrates worldwide (such as in sub-Saharan Africa) may have even fewer available resources to resuscitate infants with extreme prematurity.10March of Dimes P. Save the Children, WHO. Born too soon: the Global Action Report on Preterm Birth. In: CP Howson, MV Kinney, JE Lawn, eds.World Health Organization. Geneva. 2012; (Accessed September 29, 2020)www.who.int/pmnch/media/news/2012/201204_borntoosoon-report.pdfGoogle Scholar These variations reveal the spectrum of differences in both resource availability and societal norms. Some countries may not have the healthcare infrastructure to support the (extensive and costly) technology needed to sustain the lives of infants with extreme prematurity. Different countries may share a different set of cultural values and beliefs that shape the ethical conversation and decisions regarding when to resuscitate the smallest babies. Still other policies may be influenced by a perception that outcomes are poor, although this can also become a self-fulfilling prophecy, because infants born at less than 25 weeks, if managed without the benefit of interventions afforded to more mature infants, are extremely likely to die and thus perpetuate high mortality rates in epidemiologic studies. Understanding the outcomes of infants with extreme prematurity is also complicated by the use of datasets that include infants who did not receive intensive intervention at delivery, driving down reported survival rates.11Lantos J.D. We know less than we think we know about perinatal outcomes.Pediatrics. 2018; 19: e20181223Crossref Scopus (11) Google Scholar More concerning and less understandable is the wide variation that occurs within similar high-resource locales in terms of resuscitation at delivery.12Arzuaga B.H. Meadow W. National variability in neonatal resuscitation practices at the limit of viability.Am J Perinatol. 2014; 31: 521-528PubMed Google Scholar Although broad guidelines as previously outlined exist, adherence to such guidelines varies.13Tonismae T.R. Edmonds B. Fadel W.F. Carlos C. Andrews B. Fritz K.A. et al.Intention to treat: obstetrical management at the threshold of viability.Am J Obst Gynecol MFM. 2020; 2: 100096Abstract Full Text Full Text PDF PubMed Scopus (4) Google Scholar,14Geurtzen R. Draaisma J. Hermens R. Scheepers H. Woiski M. van Heijst A. et al.Perinatal practice in extreme premature delivery: variation in Dutch physicians' preferences despite guideline.Eur J Pediatr. 2016; 175: 1039-1046Crossref PubMed Scopus (26) Google Scholar Additionally, specific institutional guidelines are rarely published and physicians do not agree at which level (institutional, regional, national) these guidelines ought to be established.15Feltman D.M. Fritz K.A. Datta A. Carlos C. Hayslett D. Tonismae T. et al.Antenatal periviability counseling and decision making: a retrospective examination by the Investigating Neonatal Decisions for Extremely Early Deliveries Study Group.Am J Perinatol. 2020; 37: 184-195Crossref PubMed Scopus (9) Google Scholar,16Krick J.A. Feltman D.M. Neonatologists' preferences regarding guidelines for periviable deliveries: do we really know what we want?.J Perinatol. 2019; 39: 445-452Crossref PubMed Scopus (12) Google Scholar Guidance for delineating the gray zone of viability and for decisions about the initiation of resuscitative efforts in that gray zone can come from multiple sources: national health policy, national or state law, professional societies, or individual institutions. In the US, decision-making in the gray zone is guided by federal policy (eg, Presidential Executive Orders) in some cases state law, national societies such as the American Academy of Pediatrics (AAP) and the American College of Obstetricians and Gynecologists (ACOG), the Neonatal Resuscitation Program (setting standards for delivery room care), hospital policy, and individual discretion.17Malloy M.H. The Born-Alive Infant Protection Act: impact on fetal and live birth mortality.Am J Perinatol. 2011; 28: 399-404Crossref PubMed Scopus (7) Google Scholar, 18Partridge J.C. Sendowski M.D. Martinez A.M. Caughey A.B. Resuscitation of likely nonviable infants: a cost-utility analysis after the Born-Alive Infant Protection Act.Am J Obstet Gynecol. 2012; 206: 49 e1-e10Abstract Full Text Full Text PDF Scopus (9) Google Scholar, 19Executive Order on Protecting Vulnerable Newborn and Infant Children. Federal Register, Vol. 85 No 192, 2020.Google Scholar, 20Muniraman H. Cascione M. Ramanathan R. Nguyen J. Medicolegal cases involving periviable births from a major United States legal database.J Matern Fetal Neonatal Med. 2018; 31: 2043-2049Crossref PubMed Scopus (4) Google Scholar, 21Cummings J. Committee On F. Newborn Antenatal counseling regarding resuscitation and intensive care before 25 weeks of gestation.Pediatrics. 2015; 136: 588-595Crossref PubMed Scopus (153) Google Scholar, 22American College of Obsetrics and Gynecology, Society for Maternal-Fetal MedicineObstetric Care consensus No. 6: periviable Birth.Obstet Gynecol. 2017; 130: e187-e199Crossref PubMed Scopus (114) Google Scholar, 23G. Weiner and J. Zaichikin, Textbook of neonatal resuscitation, American Academy of Pediatrics: Elk Grove Village, IL. 7th ed. 2016Google Scholar However, guidelines from professional organizations within a given country do not always align. For example, in the US, both the AAP and ACOG recommend approaching the management of infants with extreme prematurity though a model of SDM, but the ACOG does not recommend magnesium, steroid administration, or tocolysis for steroid administration at 22 weeks, despite the fact that these therapies are encouraged at later gestational ages and recently have been shown to improve outcomes at 22-23 weeks as well.21Cummings J. Committee On F. Newborn Antenatal counseling regarding resuscitation and intensive care before 25 weeks of gestation.Pediatrics. 2015; 136: 588-595Crossref PubMed Scopus (153) Google Scholar,22American College of Obsetrics and Gynecology, Society for Maternal-Fetal MedicineObstetric Care consensus No. 6: periviable Birth.Obstet Gynecol. 2017; 130: e187-e199Crossref PubMed Scopus (114) Google Scholar,24Mori R. Kusuda S. Fujimura M. Neonatal Research Network J. Antenatal corticosteroids promote survival of extremely preterm infants born at 22 to 23 weeks of gestation.J Pediatr. 2011; 159: 110-114 e1Abstract Full Text Full Text PDF PubMed Scopus (103) Google Scholar,25Ehret D.E.Y. Edwards E.M. Greenberg L.T. Bernstein I.M. Buzas J.S. Soll R.F. et al.Association of antenatal steroid exposure with survival among infants receiving postnatal life support at 22 to 25 weeks' gestation.JAMA Netw Open. 2018; 1: e183235Crossref PubMed Scopus (61) Google Scholar Although all of these entities are stakeholders in the management of infants with extreme prematurity, and some flexibility in the application of management guidelines in different regions is helpful to support individualized care, conflicting recommendations are inherently problematic and introduce the possibility for unnecessary and confusing practice variation at best, and systematic inequity at worst. Parents are major stakeholders in these decisions, but they may not be aware of such variations and may unwittingly choose a center where the option of resuscitation is not available. Parents of infants with extreme prematurity who have experienced these regional variations have called for transparency in information regarding resuscitation practices and to support parental choice.26Tysdahl C. Tysdahl T. Wendt J. Wendt L. Feltman D.M. Helping families navigate center variability in antenatal counseling for extremely early births.Pediatrics. 2019; 144Crossref PubMed Scopus (3) Google Scholar Ideally, within a given health system (usually a country, or individual states in the US), variation in delivery room decisions should only result from an individual maternal-fetal medical context and parents’ values and preferences. Moral justification for variation between or within institutions could be based in the professional identity of the clinician, but risks values imposition and biases, which could create or exacerbate inequities. In countries without a national government-issued guideline, the predominant professional society is the logical authority for a national approach to resuscitation decisions at the margin of viability. In addition to driving poor communication and dissatisfaction by parents and clinicians, local inconsistencies in approaches to infants with extreme prematurity have the potential to drive injustice, and variation in outcomes of infants with extreme prematurity has long perplexed those who care for this population. Better outcomes in Japan, for example, or more recently in certain centers in the US and Sweden, have been noted, but these observations have not yet led to the insights necessary to “level the playing field” and ensure that all infants with extreme prematurity have access to the bundle of care that results in the best outcomes, within and between countries with similar healthcare resources.4Watkins P.L. Dagle J.M. Bell E.F. Colaizy T.T. Outcomes at 18 to 22 months of corrected age for infants born at 22 to 25 weeks of gestation in a center practicing active management.J Pediatr. 2020; 217: 52-8 e1Abstract Full Text Full Text PDF PubMed Scopus (48) Google Scholar,27Isayama T. The clinical management and outcomes of extremely preterm infants in Japan: past, present, and future.Transl Pediatr. 2019; 8: 199-211Crossref PubMed Scopus (31) Google Scholar,28Backes C.H. Soderstrom F. Agren J. Sindelar R. Bartlett C.W. Rivera B.K. et al.Outcomes following a comprehensive versus a selective approach for infants born at 22 weeks of gestation.J Perinatol. 2019; 39: 39-47Crossref PubMed Scopus (30) Google Scholar Disparities in outcomes for the most premature infants within countries, in hospitals governed by the same laws and largely similar approaches to healthcare financing are of particular concern, because there is the possibility that, beyond acceptance and uptake of healthcare innovation and prevailing national cultural context, insidious and harmful bias and injustice exist. The labor and delivery and NICU are not immune to racial and socioeconomic disparities that are present in other areas of medicine (and society at large). Previous research has shown that Black women are nearly 3 times more likely to give birth at extremely premature gestations compared with White mothers and that Black infants are more likely to be born in lower quality hospitals with higher risk adjusted mortality rates compared with White infants.29Martin J.A. Hamilton B.E. Osterman M.J.K. Driscoll A.K. Births: final Data for 2018.Natl Vital Stat Rep. 2019; 68: 1-47Google Scholar,30Howell E.A. Hebert P. Chatterjee S. Kleinman L.C. Chassin M.R. Black/white differences in very low birth weight neonatal mortality rates among New York City hospitals.Pediatrics. 2008; 121: e407-e415Crossref PubMed Scopus (79) Google Scholar Feltman et al examined differences in rates of neonatal resuscitation of infants with extreme prematurity among several centers and found that, although there were no differences in resuscitation plans between Black and White mothers, Black mothers were nearly 3 times as likely to deliver in a center with “high” resuscitation rates, which is consistent with other studies demonstrating higher intubation rates in Black infants born at the margin of gestational viability.15Feltman D.M. Fritz K.A. Datta A. Carlos C. Hayslett D. Tonismae T. et al.Antenatal periviability counseling and decision making: a retrospective examination by the Investigating Neonatal Decisions for Extremely Early Deliveries Study Group.Am J Perinatol. 2020; 37: 184-195Crossref PubMed Scopus (9) Google Scholar,31Tucker Edmonds B. Fager C. Srinivas S. Lorch S. Racial and ethnic differences in use of intubation for periviable neonates.Pediatrics. 2011; 127: e1120-e1127Crossref PubMed Scopus (33) Google Scholar It is unclear whether such trends reflect differences in preferences among different races vs differences in hospital policies (or clinician assumptions) when serving specific racial populations, or the tendency for Black mothers to live and deliver in urban areas where such hospitals are located; further study in this area is needed.32Howell E.A. Egorova N. Balbierz A. Zeitlin J. Hebert P.L. Black-white differences in severe maternal morbidity and site of care.Am J Obstet Gynecol. 2016; 214: 122 e1-122 e7Abstract Full Text Full Text PDF PubMed Scopus (137) Google Scholar However, there is also some encouraging literature to support that some racial disparities may be narrowing over time.33Boghossian N.S. Geraci M. Lorch S.A. Phibbs C.S. Edwards E.M. Horbar J.D. Racial and ethnic differences over time in outcomes of infants born less than 30 weeks' gestation.Pediatrics. 2019; 144: e20191106Crossref PubMed Scopus (29) Google Scholar A study by Travers et al, which studied a large cohort of extremely preterm infants, found that improvements in adjusted rates of mortality and most major morbidities over a 15-year period did not differ by race or ethnicity.34Travers C.P. Carlo W.A. McDonald S.A. Das A. Ambalavanan N. Bell E.F. et al.Racial/ethnic disparities among extremely preterm infants in the United States from 2002 to 2016.JAMA Netw Open. 2020; 3: e206757Crossref PubMed Scopus (23) Google Scholar The study also found improving inequities in regard to important care practices for mothers facing preterm delivery, including the use of antenatal corticosteroids and cesarean delivery. Differences in clinician assumptions regarding patients' preferences on the basis of socioeconomic status have also been demonstrated. Physicians with an implicit bias toward higher socioeconomic status patients are more likely to recommend comfort care when presented with a patient of high socioeconomic status and threatened preterm delivery at 23 weeks of gestation, although no such trends were shown to support racial biases and although clear trends along the lines of socioeconomic status were not observed in a similar study involving simulated patients.35Shapiro N. Wachtel E.V. Bailey S.M. Espiritu M.M. Implicit physician biases in periviability counseling.J Pediatr. 2018; 197: 109-115 e1Abstract Full Text Full Text PDF PubMed Scopus (18) Google Scholar,36Tucker Edmonds B. McKenzie F. Fadel W.F. Matthias M.S. Salyers M.P. Barnato A.E. et al.Using simulation to assess the influence of race and insurer on shared decision making in periviable counseling.Simul Healthc. 2014; 9: 353-359Crossref PubMed Scopus (15) Google Scholar However, studies in adult medical settings have shown that Black patients rated their medical interactions as significantly less participatory than White patients.37Cooper-Patrick L. Gallo J.J. Gonzales J.J. Vu H.T. Powe N.R. Nelson C. et al.Race, gender, and partnership in the patient-physician relationship.JAMA. 1999; 282: 583-589Crossref PubMed Scopus (1508) Google Scholar Thus, it is possible that regional trends are due, at least in part, to overt or implicit biases based on race or socioeconomic status. Although a tailored framework for counseling and decision-making for infants with extreme prematurity informed by demonstrated cultural preferences has potential value, flawed assumptions that limit patients’ choices among reasonable alternatives and perpetuate injustice must be avoided. Ultimately, our goal should be to address variability through scientific inquiry and health economic policy—the former to continue to elucidate the factors that predispose extremely preterm infants to a good or bad outcome and to determine which components of small baby care most impact short- and long-term outcomes, and the latter to ensure that insufficient access to hospital resources at the level of institutions, regions, and states does not perpetuate inequities for infants (and mothers) cared for in those settings. Although inconsistencies clearly exist in terms of approaches to the infant with extreme prematurity around the world, it is interesting to note the common thread of consistency, which is that approaches recommended by professional societies and published as reflective of a country's specific management guidelines are, by the majority, based on gestational age rather than outcomes. The difficulties in using gestational age-based cutoffs for determining whether an infant is potentially eligible for resuscitation at birth are well-known and include potential errors in pregnancy dating.38Committee on Obstetric Practice tAIoUiM, the Society for Maternal-Fetal M. Committee Opinion No 700: methods for Estimating the Due Date.Obstet Gynecol. 2017; 129: e150-e154Crossref PubMed Scopus (232) Google Scholar For pregnant women with insufficient access to prenatal care to ensure accurate gestational dating, excessive reliance on gestational dating as the basis for periviability counseling can exacerbate inequities in terms of the appropriateness and quality of counseling and infant outcomes. Strategies to avoid these pitfalls include taking a thorough obstetric history as a part of the consultation, requesting an up-to-date estimated fetal weight, correlating the fetal weight with the clinical history to consider possible intrauterine growth restriction, and, in some cases, recognizing that poor obstetric dating excludes the option of prenatal decision-making and necessitates relying on further assessment in the NICU while initiating a trial of therapy. Additionally, there are other modifiable and nonmodifiable risk factors that can worsen outcomes that are unrelated to gestational age, including race, plurality, infant sex, weight, administration of corticosteroids, magnesium, and site of delivery.22American College of Obsetrics and Gynecology, Society for Maternal-Fetal MedicineObstetric Care consensus No. 6: periviable Birth.Obstet Gynecol. 2017; 130: e187-e199Crossref PubMed Scopus (114) Google Scholar,39Tyson J.E. Parikh N.A. Langer J. Green C. Higgins R.D. National Institute of Child Health, et alIntensive care for extreme prematurity--moving beyond gestational age.N Engl J Med. 2008; 358: 1672-1681Crossref PubMed Scopus (715) Google Scholar As such, there is a call within the literature to move beyond using a particular gestational age alone as an absolute cutoff to determine when resuscitation of an infant with extreme prematurity is “futile.”40Dupont-Thibodeau A. Barrington K.J. Farlow B. Janvier A. End-of-life decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be avoided.Semin Perinatol. 2014; 38: 31-37Crossref PubMed Scopus (56) Google Scholar, 41Janvier A. Prentice T. Lantos J. Blowing the whistle: moral distress and advocacy for preterm infants and their families.Acta Paediatr. 2017; 106: 853-854Crossref PubMed Scopus (6) Google Scholar, 42Haward M.F. Gaucher N. Payot A. Robson K. Janvier A. Personalized decision making: practical recommendations for antenatal counseling for fragile neonates.Clin Perinatol. 2017; 44: 429-445Abstract Full Text Full Text PDF PubMed Scopus (55) Google Scholar However, a more contemporary and versatile approach to counseling, which takes into account epidemiologic nuance and evolving ethical frameworks for decision-making at the margins of viability, is potentially difficult to operationalize in modern healthcare institutions. Unfortunately, attempts to create innovative predictive models for outcomes of infants with extreme prematurity, including neural network modeling, have not been shown to be sufficiently accurate for widespread adoption.43Crilly C.J. Haneuse S. Litt J.S. Predicting the outcomes of preterm neonates beyond the neonatal intensive care unit: what are we missing?.Pediatr Res. 2020; 19: 1-20Google Scholar In practice, the desire for readily available and easily interpretable guidelines based on factors other than gestational age that are nuanced enough to avoid exacerbating inequities and subjectivity in counseling remains elusive for many institutions. When outcomes are uncertain and several options for clinical management exist, ethical principles support upholding the principle of autonomy, defined as a patient's right to hold views, make choices, and take actions based on their values and beliefs.44Beauchamp T.C. Principles of biomedical ethics. Oxford University Press, Oxford, UK2013Google Scholar Infants are not capable of making autonomous choices and decisions, and thus parents are deemed to be the appropriate (and “natural”) decision makers for their children. Parents, in their capacity as decision makers, are meant to act in their child's best interest, and at a minimum to make decisions that do not cause harm.45Diekema D.S. Parental refusals of medical treatment: the harm principle as threshold for state intervention.Theor Med Bioeth. 2004; 25: 243-264Crossref PubMed Scopus (357) Google Scholar The goal of acting in a newborn infant's best interest is complex because the interests of the parents (and family) and the interests of the infant are intertwined. Likewise, physicians are also tasked with acting in the best interest of their patients and have sworn an oath to “do no harm.” When outcomes are uncertain, as they are at extremely early gestational ages, and several possible clinical options are available, clinicians and parents enter into what has been termed the “gray zone of parental discretion,” where the parent has the ultimate decision in choosing the appropriate clinical path for their baby.46Lantos J.D. Ethical problems in decision making in the neonatal ICU.N Engl J Med. 2018; 379: 1851-1860Crossref PubMed Scopus (86) Google Scholar This gray zone is distinguished from infants born before or after that gestational age range: for infants born before they reach the gray zone, parental requests for initiation of life-sustaining treatment are overridden on the basis that they impose burden without potential for benefit (refusal to honor parental requests for intervention at this gestational age can also be supported by a distributive justice framework). In contrast, for infants born after the gray zone period, there is a clinical (and state) duty to promote the interests of the infant above and beyond the parents' preferences, and parents reach the limit of gestational authority. For parents facing the delivery of an infant with extreme prematurity, the initial decision will be to provide intensive (NICU) care vs palliative or comfort care at delivery. This zone of discretion can be uncomfortable for NICU clinicians, who might experience moral distress when parents make a decision that they themselves have not recommended (or that conflicts with their personal values), or if they feel constrained by institutional or legal policies.47Dryden-Palmer K. Moore G. McNeil C. Larson C.P. Tomlinson G. Roumeliotis N. et al.Moral distress of clinicians in Canadian pediatric and neonatal ICUs.Pediatr Crit Care Med. 2020; 21: 314-323Crossref PubMed Scopus (29) Google Scholar Previous research has also shown that physicians worry parents will experience decisional regret.48Haward M.F. Janvier A. Lorenz J.M. Fischhoff B. Counseling parents at risk of delivery of an extremely premature infant: differing strategies.AJOB Empir Bioeth. 2017; 8: 243-252Crossref PubMed Scopus (14) Google Scholar There is evidence that decisional regret regarding the choice to continue or