Faculty Bibliography

RATIONALE/BACKGROUND:Ensuring high-quality end-of-life (EOL) care for neonatal and pediatric patients and their families in the ICU requires a comprehensive, evidence-based, multidisciplinary approach. OBJECTIVES/OBJECTIVE:To develop and provide evidence-based recommendations for EOL care and management of critically ill neonatal and pediatric patients and their families. DESIGN/METHODS:The American College of Critical Care Medicine Board convened a 21-member multidisciplinary panel of experts in pediatric critical care medicine, nursing, neonatology, psychology, spiritual care, social work, child life, respiratory care, bioethics, cardiology/cardiac intensive care, palliative care, and bereaved parents. The panel included two expert methodologists specialized in developing evidence-based recommendations in alignment with the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) methodology. Conflict-of-interest policies were followed during all phases of guidelines development including task force selection and voting. METHODS:The panel members identified and formulated five Population, Intervention, Comparator, and Outcome questions. We conducted a systematic review of literature (2000-2025) for each question to identify best available evidence, then statistically analyzed and assessed the certainty of evidence using the GRADE methodology. We used the GRADE evidence-to-decision framework to formulate the recommendations. RESULTS:The panel generated five conditional recommendations and one good practice statement, focused on advance care planning, pediatric palliative care consultation and education, systematic symptom management, bereavement support, and health equity in EOL care. CONCLUSIONS:The recommendations were derived from the best available evidence at time of publication and provide valuable guidance to support EOL care for PICU and neonatal ICU patients and their families.

CONTEXT/BACKGROUND:Pediatric palliative care (PPC) consultation for infants with life-limiting conditions provides parents and caregivers with opportunities to participate in advance care planning, shared decision-making, and to receive appropriate psychosocial and spiritual supports. OBJECTIVES/OBJECTIVE:To evaluate the impact of PPC consultation on spiritual, psychosocial, and communication outcomes for infants that died in the NICU. METHODS:Retrospective chart review of infants who died in a level IV NICU over a 10-year period (2014-2024). Mann-Whitney U and Chi-square or Fisher's exact tests were used to evaluate demographic and medical differences between infants with and without PPC consultation. Regression analyses were used to evaluate the impact of PPC on psychosocial, spiritual, and communication outcomes after adjusting for relevant covariates. RESULTS:There were significant medical and demographic differences between infants with PPC and no PPC consultation. Infants with PPC consultation had significantly higher odds of referral to child life, participation in memory making activities, documentation of family meetings and advance care planning discussions, and a higher incidence rate ratio of NICU social work visits and family meetings during their admission after adjusting for potential confounders. CONCLUSION/CONCLUSIONS:PPC consultation is associated with improved psychosocial, spiritual, and communication support utilization for seriously ill NICU infants and their families.

Perinatal palliative care (PnPC) is a relatively new branch of pediatric palliative care (PPC), which focuses on providing holistic care in the antenatal, delivery, and neonatal settings. In this paper, we address previously unexplored justice-based ethical questions related to the provision of PnPC. We examine why some families who receive the diagnosis of a potentially life-limiting condition in their baby before or after birth receive PnPC support whilst others do not. We describe current inequities in the access to, and delivery of, PnPC. Drawing on philosophical theory (the Capabilities Approach) we argue that palliative care represents a valuable capability for babies with life limiting illness and their families. Health professionals should advocate for and promote access to this option for all families, regardless of whether it is ultimately taken up.

CONTEXT/BACKGROUND:Little is known about the prevalence of goal-concordant care (GCC) in the NICU and whether it can be measured from chart data. OBJECTIVES/OBJECTIVE:To determine if GCC can be evaluated using chart data, to identify factors associated with GCC, and to evaluate the impact of pediatric palliative care (PPC) consultation on GCC. METHODS:Retrospective review of infants who died in a level IV NICU over a 10-year period (2014-2024). A structured questionnaire was used to guide independent chart abstraction for GCC outcomes between two reviewers. Cohen's kappa was used to measure reviewer agreement. Mann-Whitney U and Chi-square or Fisher's exact tests were used to evaluate differences between infants with GCC vs. no GCC. Logistic regression was used to evaluate the impact of PPC on aspects of GCC. RESULTS:78% (99/127) of patients received GCC. Reviewer agreement for determining aspects of GCC was low, however, consensus was reached for all GCC outcomes. GCC was significantly associated with religious tradition, insurance status, limitations of resuscitation, mode of death, PPC consult, any family meeting or advance care planning discussion, and more social work visits. In logistic regression, PPC consultation was not a significant predictor of GCC after adjusting for religion, insurance, time since death, length of stay, and family meetings. CONCLUSION/CONCLUSIONS:Most infants received GCC, which was able to be determined from chart data. GCC was associated with several demographic and hospitalization factors such as PPC consultation and psychosocial supports. After adjusting for confounding, PPC was not a significant predictor of GCC.

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..

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.

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.