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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., (© 2024. The Author(s), under exclusive licence to Springer Nature America, Inc.)

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., Competing Interests: Disclosure The authors have nothing to disclose., (Copyright © 2024 Elsevier Inc. All rights reserved.)

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., (Copyright © 2024 by the American Academy of Pediatrics.)

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.

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., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

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., (Copyright © 2023 by the American Academy of Pediatrics.)

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., Competing Interests: Declaration of competing interest The authors report no conflicts of interest., (Copyright © 2023 Elsevier Ltd. All rights reserved.)

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.

Despite improvements in survival over the past few decades, pulmonary immaturity and the use of mechanical ventilation have stunted reduction in short- and long-term morbidities for infants at the borderline of viability (22-24 weeks of gestation). It has long been suspected that the use of an artificial womb or artificial placenta to preserve native fetal physiology and maintain fluid- rather than air-filled lungs would help to improve outcomes for these infants. As such, several institutions have ongoing efforts to develop this technology, bringing the field of neonatology within sight of clinical trials. Prior to use in humans, several important ethical issues should be considered and discussed, including the moral status of these patients and the term used to describe them, whether neonate, fetus, or another term entirely. These determinations will guide when it is appropriate to use the technology and when it is permissible to withdraw this support, as well as how to ascribe parental rights and the legal status of these patients., Competing Interests: Declaration of Competing Interest The authors report no conflicts of interest and no proprietary or commercial interest in any product mentioned or concept discussed in this article., (Copyright © 2021 Elsevier Inc. All rights reserved.)

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.", (© 2022 The Hastings Center.)

Crisis standards of care have been widely developed by healthcare systems and states in the United States during the COVID-19 pandemic, and in some rare cases have actually been used to allocate medical resources. All publicly available U.S. crisis standards of care with a mechanism for allocating scarce resources make use of the Sequential Organ Failure Assessment (SOFA) score in hopes of assigning scarce resources to those patients who are more likely to survive. We reflect on the growing body of evidence suggesting that the SOFA score has limited accuracy in predicting mortality among patients hospitalized with COVID-19 and that the SOFA score systematically disfavors Black patients. Use of the SOFA score for allocating scarce resources may therefore result in Black patients with equal likelihood of survival being deprived of life-saving medical resources. There is also a risk of injustice for patients with non-COVID-19 diagnoses, for whom the SOFA score may be a more accurate prognostic score, but who might nevertheless be unfairly (de)prioritized when assessed alongside COVID-19 patients using the same scoring system. For these reasons we recommend that the SOFA score not be used for triage purposes during the COVID pandemic, and that a national effort be made to develop and empirically test crisis standards of care in advance of the next public health emergency., (Copyright 2021 The Journal of Clinical Ethics. All rights reserved.)

The clinical productivity of neonatology divisions is often defined as relative value units (RVUs) produced per clinical full-time equivalent physicians (cFTEs). Based on the realities of neonatology clinical billing, commonly daily bundled charges, and one cFTE defined as a fixed number of clinical hours per year, the RVU:cFTE ratio will inevitably be proportional to the number of NICU patients per physician clinical hour. As a result, increasing productivity defined as the RVU:cFTE ratio, a commonly incentivized goal in neonatology, requires decreasing physician time per patient. As neonatology groups seek to surpass RVU:cFTE benchmarks based upon productivity of peer institutions, they end up in a "race to the bottom," each striving to spend less time per patient than their peers. This definition of physician productivity fails to consider the importance of time itself as an essential "product" provided by physicians, and can undermine the clinical mission and quality of care., (© 2021. The Author(s), under exclusive licence to Springer Nature America, Inc.)

Critical decision-making in neonatology and other areas of pediatrics often carries with it a complex and difficult ethical component. For any treatment under consideration, the impermissible-permissible-obligatory (I-P-O) spectrum provides a useful framework for determining how to proceed. Any proposed treatment can be located along this spectrum, and identified as either ethically impermissible, permissible, or obligatory. Treatments determined to be ethically impermissible should not be made available by physicians. Those deemed ethically permissible should be explained to parents, commonly with a specific recommendation. Informed parents should then be free to choose from among permissible options. Potential treatments deemed ethically obligatory should be provided to the patient, even in the face of parental objection. The fundamental ethical work in neonatology and pediatrics is determining where on the I-P-O spectrum a treatment under consideration should be located. This should be determined by the prognosis for the patient with and without the treatment, the feasibility of providing the treatment, and consideration of all relevant rights and obligations. Location on the line is dynamic, and clinicians should be open to movement of a given treatment along the spectrum as new information, particularly regarding effectiveness, toxicity, and/or alternatives, becomes available. This framework provides a structure for ethical conversation and decision-making related to a specific patient, as well as in the formation of institutional and national guidelines.

The coronavirus disease-2019 (COVID-19) has caused shortages of life-sustaining medical resources, and future waves of the virus may cause further scarcity. The Yale New Haven Health System developed a triage protocol to allocate scarce medical resources during the COVID-19 pandemic, with the primary goal of saving the most lives possible, and a secondary goal of making triage assessments and decisions consistent, transparent, and fair. We outline the process of developing the triage protocol, summarize the protocol itself, and discuss the major ethical challenges encountered, along with our answers to these challenges. These challenges include (1) the role of age and chronic comorbidities; (2) evaluating children and pregnant patients; (3) racial, ethnic, and socioeconomic disparities in health; (4) prioritization of healthcare workers; and (5) balancing clinical judgment versus protocolized assessments. We conclude with a review of the limitations of our protocol and the lessons learned. We hope that a robust public discussion of such protocols and the ethical challenges that they raise will result in the fairest possible processes, less need for triage, and more lives saved during future waves of the COVID-19 pandemic and similar public health emergencies., (Copyright 2020 The Journal of Clinical Ethics. All rights reserved.)

Objectives: When obtaining informed permission from parents for invasive procedures, trainees and supervisors often do not disclose information about the trainee's level of experience. The objectives of this study were 3-fold: (1) to assess parents' understanding of both academic medical training and the role of the trainee and the supervisor, (2) to explore parents' preferences about transparency related to a trainee's experience, and (3) to examine parents' willingness to allow trainees to perform invasive procedures., Methods: This qualitative study involved 23 one-on-one interviews with parents of infants younger than 30 days who had undergone a lumbar puncture. In line with grounded theory, researchers independently coded transcripts and then collectively refined codes and created themes. Data collection and analysis continued until thematic saturation was achieved. In addition, to triangulate the findings, a focus group was conducted with Yale School of Medicine's Community Bioethics Forum., Results: Our analysis revealed 4 primary themes: (1) the invasive nature of a lumbar puncture and the vulnerability of the newborn creates fear in parents, which may be mitigated by improved communication; (2) parents have varying degrees of awareness of the medical training system; (3) most parents expect transparency about provider experience level and trust that a qualified provider will be performing the procedure; and (4) parents prefer an experienced provider to perform a procedure, but supervisor presence may be a qualifying factor for inexperienced providers., Conclusions: Physicians must find a way to improve transparency when caring for pediatric patients while still developing critical procedural skills.

Background/objectives: Necrotizing enterocolitis (NEC) is a serious disease linked to prematurity. A variant, NEC totalis, is associated with nearly 100% mortality. There is wide variation in counseling practices for NEC totalis. Our objectives are to determine what treatment options, if any, are offered to families, and which factors influence these decisions., Methods: An anonymous survey was distributed to members of the AAP Sections on Neonatal-Perinatal Medicine and Pediatric Surgery. Data were analyzed utilizing chi-square tests and Spearman correlations, where applicable., Results: In the setting of NEC totalis, 90% of the 378 respondents viewed offering life-sustaining interventions (LSI) as ethically permissible and 87% felt that transfer to another center willing to provide LSI should be considered; however, only 43% reported offering LSI to families., Conclusions: Management of NEC totalis remains challenging and significant practice variability persists. Most respondents do not offer ongoing medical/surgical management, despite believing it is an ethically permissible option.

Investigators have recently described successful use of an EXTrauterine Environment for Neonatal Development (EXTEND), essentially an artificial womb, to maintain extremely premature fetal lambs ex utero for up to 4 weeks, supporting normal growth and development. The animals were maintained in a fluid environment (Biobag) while nutrition and gas exchange were supported via umbilical catheters and the use of an external membrane oxygenator. The lambs studied correspond to humans at 23-25 weeks' gestation, which is the target range for proposed clinical trials. This new technology offers the possibility of improving outcomes in a patient population with a high rate of mortality and morbidity. However, if safety and efficacy are adequately demonstrated in the lamb model, there remain important ethical considerations worthy of discussion prior to human trials. Moreover, the authors state there is no intention to use EXTEND on patients below the current limit of viability, but this possibility should nevertheless be considered, and should also be the subject of ethical discussion. Analysis of relevant ethical issues, including patient selection, moral status, rights, obligations, and others should precede use of this promising technology in humans.

Certain interventions in the neonatal intensive care unit are considered ethically obligatory, and should be provided over parental objections. After reviewing a case, comparative outcome data, and relevant ethical principles, we propose that extracorporeal membrane oxygenation for meconium aspiration syndrome may, in some cases, be an ethically obligatory treatment., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Congenital bilateral renal agenesis has been considered a uniformly fatal condition. However, the report of using serial amnioinfusions followed by the live birth in 2012 and ongoing survival of a child with bilateral renal agenesis has generated hope, but also considerable controversy over an array of complex clinical and ethical concerns. To assess the ethical concerns associated with using serial amnioinfusions for bilateral renal agenesis, we assembled a multidisciplinary group to map the ethical issues relevant to this novel intervention. The key ethical issues identified were related to 1) potential risks and benefits, 2) clinical care compared with innovation compared with research, 3) counseling of expectant parents, 4) consent, 5) outcome measures, 6) access and justice, 7) conflicts of interest, 8) effects on clinicians, 9) effects on institutions, and 10) long-term societal implications. These ethical issues should be addressed in conjunction with systematic efforts to examine whether this intervention is safe and effective. Future work should capture the experiences of expectant parents, women who undergo serial amnioinfusions, those born with bilateral renal agenesis and their families as well as clinicians confronted with making difficult choices related to it.

Context: Health care professionals (HCPs) are crucial to physician-assisted death (PAD) provision., Objectives: To quantitatively assess the favorability of justifications for or against PAD legalization among HCPs, the effect of the terms "suicide" and "euthanasia" on their views and their support for three forms of PAD., Methods: Our questionnaire presented three cases: physician-assisted suicide, euthanasia for a competent patient, and euthanasia for an incompetent patient with an advance directive for euthanasia. Respondents judged whether each case was ethical and should be legal and selected their justifications from commonly cited reasons. The sample included physician clinicians, researchers, nonphysician clinicians, and other nonclinical staff at a major academic medical center., Results: Of 221 HCPs, the majority thought that each case was ethical and should be legal. In order of declining favorability, justifications supporting PAD legalization were relief of suffering, right to die, mercy, acceptance of death, nonabandonment, and saving money for the health care system; opposing justifications were the slippery slope argument, unnecessary due to palliative care, killing patients is wrong, religious views, and suicide is wrong. The use of suicide and euthanasia terminology did not affect responses. Participants preferred physician-assisted suicide to euthanasia for a competent patient (P < 0.0001) and euthanasia for an incompetent patient to euthanasia for a competent patient (P < 0.005)., Conclusions: HCPs endorsed patient-centered justifications over other reasons, including role-specific duties. Suicide and euthanasia language did not bias HCPs against PAD, challenging claims that such value-laden terms hinder dialogue. More research is required to understand the significance of competency in shaping attitudes toward PAD., (Published by Elsevier Inc.)

Objective: The purpose of this study was to determine the opinions of practising neonatologists regarding the ethical permissibility of unilateral Do Not Attempt Resuscitation (DNAR) decisions in the neonatal intensive care unit., Study Design: An anonymous survey regarding the permissibility of unilateral DNAR orders for three clinical vignettes was sent to members of the American Academy of Pediatrics Section of Perinatal Medicine., Results: There were 490 out of a possible 3000 respondents (16%). A majority (76%) responded that a unilateral DNAR decision would be permissible in cases for which survival was felt to be impossible. A minority (25%) responded 'yes' when asked if a unilateral DNAR order would be permissible based solely on neurological prognosis., Conclusions: A majority of neonatologists believed unilateral DNAR decisions are ethically permissible if survival is felt to be impossible, but not permissible based solely on poor neurological prognosis. This has significant implications for clinical care., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Pregnancy in an early adolescent carries with it specific ethical considerations, in some ways different from pregnancy in an adult and from medical care of a non-pregnant adolescent. Obstetrical ethics emphasizes the right of the patient to autonomy and bodily integrity, including the right to refuse medical intervention. Pediatric ethics recognizes the right of parents, within limits, to make medical decisions for their children, and the right of a child to receive medical or surgical interventions likely to be of benefit to her, sometimes over her own objections. As the child gets older, and particularly during the years of adolescence, there is also a recognition of the right to an increasingly prominent role in decisions about her own healthcare. Pediatric obstetrical ethics, referring to ethical decisions made by, with, and for pregnant early adolescents, represents the intersection of these different cultures. Principles and approaches from both obstetrical and pediatric ethics, as well as a unified understanding of rights, obligations, and practical considerations, will be needed., (Copyright © 2016. Published by Elsevier Inc.)