Faculty Bibliography

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.

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.

The oncology floor can be a silent place. Unlike the cardiology floor, with its insistent telemetry beeping, or the incessant bustle of the general ward below. Silence can be healing, and the oncology floor reveres all forms of healing it can find. Yet some voices ring loud on this floor. As an intern, I would grimace into my scut list as oncology attendings intoned dire diagnoses and exhorted still-reeling victims to altruistically enroll in clinical trials. I mutely ground my teeth listening to the relentless stream of probabilities and adverse reactions flooding into the shocked silence of a child baffled by his or her metamorphosis into a cancer patient between breakfast and lunch. The practiced script unwound, preemptively striking down every potential worry already foreseen. But sometimes what was unspoken was even worse. Silence can give patients space to comprehend, digest, formulate questions, and enunciate fears. I believe in the silence of the "great empty cup of attention." Still, ethics can founder in silence.