Parent Health-Related Quality of Life for Infants with Congenital Anomalies Receiving Neonatal Intensive Care.

OBJECTIVE: To examine factors associated with parent quality of life during and after neonatal intensive care unit (NICU) discharge among parents of infants with congenital anomalies admitted to the NICU. STUDY DESIGN: This secondary analysis of 2 prospective cohort studies between 2016 and 2020 at a level IV NICU included parents of infants with major congenital anomalies receiving NICU care. The primary outcomes were parent health-related quality of life (HRQL) during the NICU stay and at 3 months post-NICU discharge. RESULTS: A total of 166 parent-infant dyads were enrolled in the study, 124 of which completed the 3-month follow-up interview. During the NICU stay, parent history of a mental health disorder (-13 points), earlier gestational age (-17 points), consultation by multiple specialists (-11 points), and longer hospital stay (-5 points) were associated with lower HRQL. Parents of infants with a neonatal surgical anomaly had higher HRQL (+4 points). At 3 months after NICU discharge, parent receipt of a psychology consult in the NICU, the total number of consultants involved in the child's care, and an infant with a nonsurgical anomaly were associated with lower parent HRQL. Parents of infants with a gastrostomy tube (-6 points) and those with hospital readmission (-5 points) had lower HRQL. Comparing same-parent differences in HRQL over time, parents of infants with anomalies did not show significant improvement in HRQL on discharge home. CONCLUSION: Parents of infants with congenital anomalies reported low HRQL at baseline and at discharge. Parents of infants with nonsurgical, medically complex anomalies requiring multispecialty care represent a vulnerable group who could be better supported during and after their NICU stay.

Uncertainty and perinatal post-traumatic stress disorder in the neonatal intensive care unit.

Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post-traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of uncertainty about illness have been theorized as an antecedent to post-traumatic stress, however the relationship has not been explored in parents of infants requiring care in the NICU. The purpose of this prospective study was to explore parental uncertainty during and after NICU discharge and the relationship between uncertainty and PPTSD. The sample consisted of 319 parents during NICU hospitalization and 245 parents at 3 months postdischarge. Parents who screened positive for PPTSD 3 months after hospital discharge reported more uncertainty both while in the NICU and 3 months after hospital discharge (p < 0.001). In parents with a personal or family history of mental illness, the moderated/mediating structural probit analysis showed no direct or indirect effect of uncertainty during hospitalization or at 3 months after hospital discharge on screening positive for PPTSD. In parents who did not report personal or family history of mental illness, uncertainty at 3 months after hospital discharge had a direct effect (b = 0.678, p < 0.001) and indirect mediating effect (b = 0.276, p < 0.001) on screening positive for PPTSD. The results provide actionable implications for mental health and NICU providers: (1) routine screening for uncertainty and risk factors including previous personal and family history of mental illness, and (2) the development of NICU follow-up support services to mitigate risk for PPTSD.

Actual and Potential Impact of a Home Nasogastric Tube Feeding Program for Infants Whose Neonatal Intensive Care Unit Discharge Is Affected by Delayed Oral Feedings.

OBJECTIVE: To compare healthcare use and parent health-related quality of life (HRQL) in 3 groups of infants whose neonatal intensive care unit (NICU) discharge was delayed by oral feedings. STUDY DESIGN: This was a prospective, single-center cohort of infants in the NICU from September 2018 to March 2020. After enrollment, weekly chart review determined eligibility for home nasogastric (NG) feeds based on predetermined criteria. Actual discharge feeding decisions were at clinical discretion. At 3 months' postdischarge, we compared acute healthcare use and parental HRQL, measured by the PedsQL Family Impact Module, among infants who were NG eligible but discharged with all oral feeds, discharged with NG feeds, and discharged with gastrostomy (G) tubes. We calculated NICU days saved by home NG discharges. RESULTS: Among 180 infants, 80 were orally fed, 35 used NG, and 65 used G tubes. Compared with infants who had NG-tube feedings, infants who had G-tube feedings had more gastrointestinal or tube-related readmissions and emergency encounters (unadjusted OR 3.97, 95% CI 1.3-12.7, P = .02), and orally-fed infants showed no difference in use (unadjusted OR 0.41, 95% CI 0.1-1.7, P = .225). Multivariable adjustment did not change these comparisons. Parent HRQL at 3 months did not differ between groups. Infants discharged home with NG tubes saved 1574 NICU days. CONCLUSIONS: NICU discharge with NG feeds is associated with reduced NICU stay without increased postdischarge healthcare use or decreased parent HRQL, whereas G-tube feeding was associated with increased postdischarge healthcare use.

Improving Prenatal Palliative Care Consultation Using Diagnostic Trigger Criteria.

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: 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: 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: 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: Diagnostic trigger lists improve initial rates of prenatal PPC consultation and additional interventions are likely needed to sustain this increase.

Role of palliative care in centers performing maternal-fetal interventions.

Advancements in maternal-fetal interventions have allowed for direct fetal access, shifting the focus of interventions from maternal health for fetal health to a focus on sole fetal/neonatal benefit. Given that access to the fetus can only be obtained through the mother, there are ethical considerations important to consider when counseling the maternal-fetal dyad. The goals of maternal-fetal interventions range from improved fetal/neonatal survival to decreased long-term morbidities and improved quality of life. However, interventions to improve quality of life may not always achieve their desired result. Additionally, maternal-fetal interventions have risks such as premature birth and other complications that should be heavily considered as they may offset the potential benefits of the procedure. While some families elect for a maternal-fetal intervention, doing every potential postnatal intervention may not be in alignment with their goals depending on the outcome of the intervention. Given the complex, value-laden decision-making that is crucial to counseling parents about decisions surrounding maternal-fetal interventions and subsequent neonatal care, palliative care specialists should be utilized in fetal centers. Palliative care specialists are trained to assist with complex, goal concordant decision-making and can guide families and medical teams through the decision points that arise during the treatment journey.

The logistics of withdrawing life-sustaining medical treatment in the neonatal intensive care unit.

Withdrawal of life sustaining medical treatments is a common mode of death in the neonatal intensive care unit. Shared decision making and communication are crucial steps prior to, during and after a withdrawal of life sustaining medical treatments. Discussion should include the steps to occur during the withdrawal. Physicians should recommend appropriate withdrawal steps based on family goals. Stepwise approach should be taken only if a family requests. Care should continue for the family and staff after the withdrawal and the infant's death.

Intensive Care Associated Experiences of Extremely Premature Infants Who Die.

Objective: Pain and quality of death are important considerations in treatment choices for children. Our objective is to assess the intensive care-associated experiences of 22-25 weeks gestational age (GA) infants who die despite intensive care treatment. Study Design: In a 1:1 case-control study, medical records were screened for all inborn 22-25 weeks GA infants who received intensive care treatments between 2014 and 2020. Cases were all infants who died. Each case was matched by GA and birth weight to an infant who survived to discharge (control). Data was collected on cases and controls for a matched timeframe based on the case's duration of intensive care treatment. Information collected included intensive care-associated negative experiences (invasive procedures, surgeries, use of pain medication) and positive experiences (enteral feedings, being held by family). Results: The cases (n=20) survived for 0 to 93 days, with median (IQR) survival 8 (5, 24) days. The mean (SD) number of invasive procedures was higher for cases than controls, 34 (30) vs. 24 (22), p=0.004. Cases underwent 8 surgeries compared to 4 in the controls. Additionally, compared to controls, cases spent more time receiving pain medications (64% vs. 27%, p<0.001) and without being fed (54% vs. 39%, p<0.001). Half of cases were never held by parents until the day they died. Conclusion: Extremely premature infants who die despite intensive care face more treatment burdens than the survivors. Larger studies are needed to confirm these findings and gather information necessary for informed decisions about intensive care treatment of these infants.

Withdrawing and Withholding Life-Sustaining Medical Therapies in the Neonatal Intensive Care Unit: Case-Based Approaches to Clinical Controversies.

In cases whereby the continuation of life-sustaining medical therapies is not in the infant's best interest and does not align with the parents' goals, it is ethically and morally advisable to withhold/withdraw life-sustaining medical therapies. Withdrawing/withholding artificial nutrition hydration is not morally or ethically different from other medical treatments. Determination of what and when to withdraw should occur through shared decision-making considering the parents' values and the infant's physiology and comfort. The practice of physician recommendations followed by parental informed nondissent should be considered in these instances.

Guidance for Pediatric End-of-Life Care.

The final hours, days, and weeks in the life of a child or adolescent with serious illness are stressful for families, pediatricians, and other pediatric caregivers. This clinical report reviews essential elements of pediatric care for these patients and their families, establishing end-of-life care goals, anticipatory counseling about the dying process (expected signs or symptoms, code status, desired location of death), and engagement with palliative and hospice resources. This report also outlines postmortem tasks for the pediatric team, including staff debriefing and bereavement.