P3.I180: Survey to Assess Neonatal Intensive Care Unit Provider Comfort with and Knowledge of Neonatal Palliative Care

Background: There is a need to increase familiarity and comfort with neonatal palliative care as an adjunct to standard practice among neonatal intensive care unit (NICU) staff in order to optimize patient care, enhance family experience, and best support providers. We aimed to characterize provider perceptions of neonatal palliative care through a survey targeting gaps in knowledge, unit supports and resources, and training.

Methods: Prospective survey of NICU providers at both a level III and level IV NICU in Mount Sinai Health System including both 5-point Likert scale and free response entries. Individual free responses were categorized into recurrent themes. Likert scale data were stratified by years of experience ( < 5 vs >5), and by role (attending vs nurse, attending vs trainee) and compared by t-test.

Results: Surveys were completed by 72 providers (Figure 1). Less experienced providers reported lower ability to identify symptoms of end of life (p= < 0.001), adequately treat pain (p=0.005), speak to parents about the dying process (p=0.001), and guide families through end of life care/compassionate extubation (p= < 0.001). Less experienced respondents felt less comfortable responding to the emotions of grieving parents (p=0.003), with trainees significantly less comfortable compared to attendings (p=0.02). Nurse and attending comfort in this category did not differ. Less experienced providers were more likely to report moral distress when an infant undergoes withdrawal of life sustaining therapy (p=0.02), but the likelihood to experience distress did not differ between roles. Nurses (p=0.002) and trainees (p=0.02) were less likely to feel included in goal of care discussions in comparison to attending neonatologists, independent of years in practice. Unique to the role of trainees was the increased likelihood to respond that parents are not informed about palliative care options when appropriate (p=0.04). For qualitative free response analysis, comments were categorized into four broad themes of areas for improvement: Education, Teamwork, Family-Based Interventions, and Hospital Structure, as well as sub-categories within these umbrellas (Figure 2). The most commonly requested interventions were utilization of private rooms (50% respondents), formal training sessions on both medical and emotional aspects of the dying infant (39%), a protocol/medication algorithm (38%), earlier presentation of palliative care as an option to families (28%), delineation of a specific palliative care team (24%), and input from all team members (21%).

Conclusion: These self-reported experiences and suggestions of providers on the frontline highlight future targets for intervention to improve neonatal palliative care training and delivery for both patients and families, while supporting staff during these challenging times.