Navigating parental disagreement: ethical analysis and a proposed approach.

Shared decision-making in pediatrics can be problematic when disagreements arise. The impermissible-permissible-obligatory (I-P-O) framework helps define the limits of parental authority when clinicians disagree with parents. There is little guidance in the literature, however, on making critical clinical decisions when parents disagree with each other. We use a clinical case involving parental disagreement over resuscitation at borderline gestational age to provide context for an analysis of several potential approaches based on established ethical principles of pediatric decision-making. We identify four potential options for delivery room care: (1) Defer to the pregnant parent; (2) withhold resuscitation unless both parents agree to it; (3) attempt resuscitation if either parent requests it; (4) decide about resuscitation using a framework of advisability. The merits and flaws of each approach are discussed. We propose an expansion of the I-P-O framework that uses consideration of clinical details, an assessment of the patient's best interest, and parental values to determine clinical advisability to guide decision-making in the setting of parental discordance.

Ethical and Legal Perspectives on the Treatment of Hypoxic Ischemic Encephalopathy in the Newborn.

Hypoxic ischemic encephalopathy (HIE) in neonates can cause severe, life-long functional impairments or death. Treatment of these neonates can involve ethically challenging questions about if, when, and how it may be appropriate to limit life-sustaining medical therapy. Further, parents whose infants suffer severe neurologic damage may seek recourse in the form of a medical malpractice lawsuit. This study uses several hypothetical cases to highlight important ethical and legal considerations in the care of infants with HIE.

Pediatric Decision-Making: ethical aspects specific to neonates.

Recently published consensus recommendations on pediatric decision-making by Salter and colleagues (2023) did not address neonatal decision-making, due to the unique complexities of neonatal care. This essay explores three areas that impact neonatal decision-making: legal and policy considerations, rapid technological advancement, and the unique emotional burdens faced by parents and clinicians during the medical care of neonates. The authors evaluate the six consensus recommendations related to these considerations and conclude that the consensus recommendations apply to neonates.

Gestational Carrier Pregnancies: Legal and Ethical Considerations for Pediatricians.

This case explores the legal and ethical considerations for pediatricians surrounding gestational carrier pregnancies in the United States. Because of high success rates for assisted reproduction, state laws supporting same-sex adoption and surrogacy, and established legal precedents, gestational carrier pregnancies are increasingly common. The case presented involves a gestational carrier in preterm labor at 30 weeks' gestation with malpositioned twins who declines a cesarean delivery. Three commentaries are presented. The first highlights the importance of understanding the ethical implications of gestational carrier pregnancies in prenatal counseling. The second commentary emphasizes the pregnant person's right to autonomy and bodily integrity, and discusses considerations in surrogacy pregnancies, including the authority to authorize a cesarean delivery, valid informed consent, and decision-making for neonates. The third commentary discusses autonomy, emphasizing the importance of contracts in surrogacy pregnancies, and suggests that, in the case of a conflict between the gestational carrier and the intended parent(s), the gestational carrier's preference should be decisive regarding medical care during pregnancy. These discussions highlight key concepts for ethically informed and family-centered care in gestational carrier pregnancies and deliveries.

Pediatric Decision Making: Consensus Recommendations.

Despite apparent disagreement in the scholarly literature on standards of pediatric decision making, a recognition that similar norms underpin many of the dominant frameworks motivated a June 2022 symposium "Best Interests and Beyond: Standards of Decision Making in Pediatrics" in St Louis, MO. Over the course of this 3-day symposium, 17 expert scholars (see author list) deliberated on the question "In the context of US pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?" The symposium and subsequent discussion generated 6 consensus recommendations for pediatric decision making, constructed with the primary goals of accessibility, teachability, and feasibility for practicing clinicians, parents, and legal guardians. In this article, we summarize these recommendations, including their justification, limitations, and remaining concerns.

The common trisomy syndromes, their cardiac implications, and ethical considerations in care.

PURPOSE OF REVIEW: To review the incidence of congenital heart disease in the trisomies, highlight the history of cardiac surgery in trisomy 21 comparing it to the increase in cardiac surgery in trisomies 13 and 18, discuss ethical issues specific to trisomies 13 and 18, and suggest a pathway of shared decision-making in the management of congenital heart disease in trisomy 13 and 18, specifically congenital heart surgery. RECENT FINDINGS: Congenital heart disease is prevalent in the trisomies and the management of these defects, especially surgical intervention, has changed. In the late 20th century, survival after cardiac surgery in trisomy 21 vastly improved, significantly decreasing morbidity and mortality secondary to pulmonary hypertension. Similarly, procedures and surgeries have been performed with increasing frequency in trisomy 13 and 18 patients and concomitantly, survival in this patient population is increasing. Yet across the United States, the willingness to perform cardiac surgery in trisomy 13 and 18 is variable, and there is ethical controversy about the correct action to take. To address this concern, a shared decision-making approach with an informed parent(s) is advised. SUMMARY: As the care and management of congenital heart disease changed in trisomy 21, so too it has with trisomy 13 and 18. Physicians and parents should develop goal-directed treatment plans balancing the risk versus benefit and consider cardiac surgical repair if feasible and beneficial.

Ethics at the end of life in the newborn intensive care unit: Conversations and decisions.

The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue life sustaining interventions. Other ethical decisions are more related to what to say rather than what to do. Although less obvious, they are equally as important, and may also have far-reaching ramifications. This essay presents the story of a newborn with profound hypoxic-ischemic encephalopathy, and reviews decisions regarding resuscitation, withdrawal of mechanical ventilation, withdrawal of medically administered nutrition and hydration, and active euthanasia. An overview of the ethical issues at work at each decision point is presented, as well as guidance regarding discussions with parents throughout the process, including specific wording. This may serve as a helpful guide for ethical deliberation, and helpful scripting for parental discussion, in similar cases.

Pediatricians' Reports of Interaction with Infant Formula Companies.

Introduction: Seventy percent of countries follow the World Health Organization International Code of Marketing Breast Milk Substitutes that prohibits infant formula companies (IFC) from providing free products to health care facilities, providing gifts to health care staff, or sponsoring meetings. The United States rejects this code, which may impact breastfeeding rates in certain areas. Objective: We aimed at gathering exploratory data about interactions between IFC and pediatricians. Methods: We distributed an electronic survey to U.S. pediatricians asking about practice demographics, interactions with IFC, and breastfeeding practices. Using the zip code of the practice, we obtained additional information from the 2018 American Communities Survey, including median income, percent of mothers who had graduated college, percent of mothers working, and racial and ethnic identity. We compared demographic data for those pediatricians who had a formula company representative visit versus not and those who had a sponsored meal versus not. Results: Of 200 participants, the majority reported a formula company representative visit to their clinic (85.5%) and receiving free formula samples (90%). Representatives were more likely to visit areas with higher-income patients (median = $100K versus $60K, p < 0.001). They tended to visit and sponsor meals for pediatricians at private practices and in suburban areas. Most of the reported conferences attended (64%) were formula company-sponsored. Conclusion: Interactions between IFC and pediatricians are prevalent and occur in many forms. Future studies may reveal whether these interactions influence the advice of pediatricians or the behavior of mothers who had planned to exclusively breastfeed.

The Case for Ethical Efficiency: A System That Has Run Out of Time.

The American health care system increasingly conflates physician "productivity" with true clinical efficiency. In reality, inordinate time pressure on physicians compromises quality of care, decreases patient satisfaction, increases clinician burnout, and costs the health care system a great deal in the long term even if it is financially expedient in the short term. Inadequate time to deliver care thereby conflicts with the core principles of biomedical ethics, including autonomy, beneficence, nonmaleficence, and justice. We propose that the health care system adjust its focus to recognize the nonmonetary value of physician time while still realizing the need to deploy resources as effectively as possible, a concept we describe as "ethical efficiency."

Does Maternal Incarceration Impact Infants with Neonatal Abstinence Syndrome?

OBJECTIVES: Opioid exposed infants born to incarcerated women represent a vulnerable and understudied subset of infants with neonatal abstinence syndrome (NAS). The impact of maternal incarceration on length of stay (LOS) for infants with NAS is unknown. We hypothesized that infants with NAS born to incarcerated women have longer hospitalizations compared to infants with NAS born to non-incarcerated women. METHODS: This is a retrospective cohort study of infants with NAS born between 2011 and 2018 at the primary delivery site for Connecticut's only women's prison. Opioid exposed infants were assessed by Finnegan Scores for withdrawal and received morphine as a first line agent and phenobarbital as a second line agent. LOS was compared using Poisson regression. RESULTS: Of 206 infants identified, 166 were included in the analysis, with 28 born to incarcerated women and 138 to non-incarcerated women. Incarcerated women were more likely to report prenatal alcohol use, 14.3% vs 2.2% p = 0.016 and benzodiazepine use 21.4% vs 7.3% p = 0.032. Infants of incarcerated women were less likely to be fed breast milk at discharge, 3.6% vs 37% p < 0.001. Adjusted mean LOS was longer among infants born to incarcerated women, 18.5 vs 16.6 days (p = 0.009). CONCLUSIONS FOR PRACTICE: Infants with NAS born to incarcerated women in Connecticut had longer LOS, lower rates of being fed breast milk, and different prenatal substance exposures than infants with NAS born to non-incarcerated women. Supporting the maternal-infant dyad until infant discharge may mitigate the potential negative impact of maternal incarceration on the care of infants with NAS.