P0539 - Establishing a NICU-integrated Palliative Care Service

Introduction: Our level IV NICU lacked a comprehensive palliative care service for our most complex patients and their families. In 2013, the AAP section on SOHPM recommended that all large health care organizations serving children with life-threatening conditions have a dedicated inter-disciplinary palliative care team. In our institution, a small percentage of our patients received a comprehensive palliative consult (CPC) from the pediatric palliative care team, mostly at end of life (EOL). In 2018, out of 40 patients who died post NICU admission, 29 (72.5%) received some form of parental support; only 5 families (12.5%) received (CPC) directed by a professional trained in guiding palliative care discussions. Our objective is to institute a NICU-integrated palliative care service to increase the percentage of eligible families receiving CPC from 12.5% to 90% by December 2020.

Methods: Using QI methodology, the first Plan-Do- Study-Act (PDSA) cycle instituted a core NICU palliative care program (“NeoPALS”) comprising NICU fellows, pediatric residents and NNPs, headed by a neonatal attending engaged in palliative care. Run charts documented effectiveness of each PDSA cycle (duration ~ 3 months). Subsequent PDSA cycles ( as documented in Table 1) involved developing trigger criteria, physician education, nursing education, comfort care and palliative policy, EMR changes and workshops in basics of palliative care discussions. A private room for families is under consideration as part of PDSA cycle 6. We measured the trends in NeoPALS utilization and identified some challenges which triggered interventions, which are being addressed on the subsequent PDSA cycles.

Results: During the first two PDSA cycles from 1/1/19 – 6/30/19, 42% of patients meeting criteria had comprehensive NeoPALS consults. In the subsequent 2 cycles 7/1/19-3/31/20 there was an improvement on the utilization of NeoPALS team with rates exceeding 60%. During cycle 4, 10/1/19-12/31/19 we saw the highest percentage of utilization with 76% of patients meeting criteria receiving a comprehensive palliative care approach. We found that a proportion of patients who met criteria did not receive NeoPALS comprehensive consultation secondary to unexpected death at birth or within hours- due to previability (< 22-24 weeks, < 400 g), or undetermined congenital disorders.

Conclusion: Establishing a NICU-integrated palliative team has improved the support offered to our parents. As many as 20% of admissions at our institution met trigger criteria for palliative support, emphasizing the felt need for a dedicated NICU integrated palliative care team. Having a trigger criteria increased palliative team consults to support transition to recovery, in addition to EOL support. The program is ongoing, currently on PDSA 6 (Interactive palliative care workshops for clinicians).