Faculty Bibliography

BACKGROUND:Three percent of pregnancies are complicated by congenital anomalies. Prenatal integration of pediatric palliative care (PPC) may be hindered by non-standardized PPC referral processes. This quality improvement (QI) project aimed to improve prenatal PPC consultation using a diagnostic trigger list. MEASURES/METHODS:Main outcome measure was the percentage of prenatal PPC consults completed based on diagnostic trigger list eligibility. Balancing measures included stakeholder perspectives on PPC consults and products. INTERVENTION/METHODS:Interventions included creation and implementation of a diagnostic trigger list for prenatal PPC consultation, educational initiatives with stakeholders, and iterative modifications of our prenatal consultation process. OUTCOMES/RESULTS:Interventions increased consultation rates ≥80% during the first six months of QI implementation (baseline vs. post-interventions) although this increase was not consistently sustained over a 12-month period. CONCLUSIONS/LESSONS LEARNED/CONCLUSIONS:Diagnostic trigger lists improve initial rates of prenatal PPC consultation and additional interventions are likely needed to sustain this increase.

Restrictive abortion laws have impacts reaching far beyond the immediate sphere of reproductive health, with cascading effects on clinical and ethical aspects of neonatal care, as well as perinatal palliative care. These laws have the potential to alter how families and clinicians navigate prenatal and postnatal medical decisions after a complex fetal diagnosis is made. We present a hypothetical case to explore the nexus of abortion care and perinatal care of fetuses and infants with life-limiting conditions. We will highlight the potential impacts of limited abortion access on families anticipating the birth of these infants. We will also examine the legally and morally fraught gray zone of gestational viability where both abortion and resuscitation of live-born infants can potentially occur, per parental discretion. These scenarios are inexorably impacted by the rapidly changing legal landscape in the U.S., and highlight difficult ethical dilemmas which clinicians may increasingly need to navigate.

OBJECTIVE: Our objective was to evaluate the preferences and experiences of bereaved parents around advance care planning (ACP) in the neonatal intensive care unit (NICU). STUDY DESIGN/METHODS: Single-center cross-sectional survey of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021 was carried out. Chi-square, Fisher's exact, Fisher Freeman Halton, and Wilcoxin rank sum tests were used to evaluate differences between parents who did and did not receive ACP. RESULTS: Out of eligible parents, 40 out of 146 (27%) responded to our survey. Most parents (31 out of 33, 94%) rated ACP as being very important and 27 out of 33 (82%) reported having ACP discussions during their child's admission. Parents preferred initial ACP discussions to occur early in their child's illness trajectory with members of the primary NICU team, with most parents' experiences aligning with these preferences. CONCLUSION/CONCLUSIONS: Parents value ACP discussions suggesting a further role for ACP in the NICU. KEY POINTS/CONCLUSIONS:· NICU parents value and participate in advance care planning discussions. · Parents prefer advance care planning with members of the primary NICU, specialty, and palliative care teams. · Parents prefer advance care planning early in their child's illness trajectory.

OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN/METHODS: Single-center, cross-sectional mixed-methods survey study of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021. Logistic regression, chi-square test, Fisher's exact test, and Wilcoxon rank-sum test were used to evaluate the relationship between ACP and parent-reported EOL outcomes. Qualitative content was analyzed through inductive coding. RESULTS: A total of 40/146 (27%) of eligible parents responded to our survey. There was a significant association between ACP and improved EOL care processes and parental satisfaction with communication. Parents with ACP were more likely to report goal-concordant care and higher levels of perceived shared decision-making. Qualitatively, emerging themes in parents' descriptions of goal-concordant care included misaligned expectations and communication. Emerging themes for parental preparedness included infant symptoms, logistical aspects, impact on parents, and degrees of preparedness. For decisional regret, the primary theme was reevaluating supports. CONCLUSION/CONCLUSIONS: ACP is associated with improved EOL care outcomes and parents qualitatively conceptualize goal-concordant care, preparedness for their child's death, and decisional regret in nuanced ways. Families should have the opportunity to participate in ACP discussions that meet their unique communication and decision-making needs. KEY POINTS/CONCLUSIONS:· ACP is associated with improved parent-reported end-of-life outcomes.. · Parents conceptualize end-of-life care outcomes in nuanced ways.. · Families should have the opportunity to participate in ACP discussions that meet their unique needs..

Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of such infants with serious illness may benefit from a standardized, process-oriented approach in decisional-support. Advance care planning (ACP), or communication that supports patients, or their surrogate decision-makers, in sharing values, goals, and preferences for future medical care, is recognized as a valuable strategy in supporting adults with serious and chronic illness. Although the role of ACP in older children and adolescents is evolving, its utility has not been systematically explored in the perinatal context. This article builds a case for formalizing a role for ACP in the NICU by defining ACP and appraising recent outcomes research, reviewing the current state of parental needs for decisional support and serious illness in the NICU, and describing how ACP may address current limitations in primary and specialty pediatric palliative care and challenges for decision-making in the newborn period.

OBJECTIVE:To characterize literature that describes infant mode of death and to clarify how limitation of life-sustaining treatment (LST) is defined and rationalized. STUDY DESIGN:Eligible studies were peer-reviewed, English-language, and included number of infant deaths by mode out of all infant deaths in the NICU and/or delivery room. RESULT:58 included studies were primarily published in the last two decades from North American and European centers. There was variation in rates of infant mode of death by study, with some showing an increase in deaths following limitation of LST over time. Limitation of LST was defined by the intervention withheld/withdrawn, the relationship between the two practices, and prior frameworks. Themes for limiting LST included diagnoses, low predicted survival and/or quality of life, futility, and suffering. CONCLUSION:Limitation of LST is a common infant mode of death, although rates, study definitions, and clinical rationale for this practice are variable.

OBJECTIVE: The study objective was to assess the correlation between hypernatremia during the first week of life and neurodevelopmental outcomes at 18 months of corrected age in premature infants. STUDY DESIGN/METHODS: A retrospective observational study of preterm infants born at less than 32 weeks of gestation who had a neurodevelopmental assessment with the Bayley scales of infant and toddler development III at 18 ± 6 months of corrected age. Serum sodium levels from birth through 7 days of life were collected. The study cohort was divided into two groups: infants with a peak serum sodium of >145 mmol/L (hypernatremia group) and infants with a peak serum sodium level of <145 mmol/L (no hypernatremia group). Prenatal, intrapartum, and postnatal hospital course and neurodevelopmental data at 18 ± 6 months were collected. Logistic regression analysis was used to assess the correlation between neonatal hypernatremia and neurodevelopment with adjustment for selected population characteristics. RESULTS: = 0.03, odds ratio [OR] = 0.8, 95% confidence interval [CI]: 0.6-0.97) when adjusted for birth weight and gestational age. CONCLUSION/CONCLUSIONS: Preterm infants born at less than 32 weeks of gestation with hypernatremia in the first week of life have lower fine motor scores at 18 months of corrected age. KEY POINTS/CONCLUSIONS:· Hypernatremia is a common electrolyte disturbance in preterm neonates.. · Hypernatremia may be associated with long-term neurodevelopmental outcomes in preterm infants.. · Hypernatremia is a potentially modifiable risk factor..

This article explores the ethical concept of "the equivalence thesis" (ET), or the idea that withdrawing and withholding life sustaining treatments are morally equivalent practices, within neonatology. We review the historical origins, theory, and clinical rationale behind ET, and provide an analysis of how ET relates to literature that describes neonatal mode of death and healthcare professional and parent attitudes towards end-of-life care. While ET may serve as an ethical tool to optimize resource allocation in theory, its clinical utility is limited given the complexity of end-of-life care decisions.

PURPOSE:The aim of the study was to describe factors that may impact pediatric trainees' willingness to disclose medical errors using clinical vignettes. METHODS:A single-center cross-sectional anonymous survey of pediatric residents and fellows at a large urban medical center in 2019 was conducted. Trainees were provided with clinical vignettes depicting an error resulting in a serious safety event (SSE), minor safety event (MSE), and near miss safety event (NMSE) and were asked to classify the type of safety event and rate and explain their agreement or disagreement with disclosure. Survey items also evaluated trainees' personal experiences with errors and disclosure. Descriptive and correlational analyses were used to characterize responses. Qualitative content from open-ended survey questions was analyzed using the constant comparative method. RESULTS:Of 126 trainees, 42 (33%) completed the survey. All agreed with disclosing the hypothetical error presented in the vignette resulting in an SSE (100%), with rates falling for the MSE (95%) and NMSE (7%). There were no significant associations between disclosure agreement for the vignettes and trainee demographic features, knowledge of safety events, prior personal experiences with errors, and disclosure. Four themes that emerged from qualitative analysis of trainees' rationales for disclosure or nondisclosure of the vignette errors are harm, parental preferences, ethical principles, and anticipatory guidance. CONCLUSIONS:Trainees had high rates of disclosure for the vignette errors cases that depicted SSEs and MSEs but lower rates for NMSEs. Trainees considered the type and level of harm caused, parental preferences, upholding ethical principles, and the need for anticipatory guidance in their rationales for disclosure or nondisclosure of the vignette errors.