Establishing a Neonatal Palliative Care Program in a Tertiary Level Neonatal Intensive Care Unit.

OBJECTIVES

To describe the planning and implementation of the neonatal palliative care (NPC) program in the neonatal intensive care unit (NICU) in a major referral hospital in western India.

METHODS

The authors describe the neonatal characteristics, components of NPC care delivered and outcomes, along with barriers and enablers of the program. This was a retrospective, single-center observational study conducted in a level IIIB NICU from December 2021 to December 2022.

RESULTS

Two hundred and sixty-six neonates were enrolled and 65 (24.4%) received NPC, of which 33 (50.8%) were enrolled at admission and 32 (49.2%) were re-directed from critical care towards palliation. The median enrollment was at 2 d of life. The most common conditions for initiating palliative care were severe sepsis with multi-organ dysfunction, complex congenital heart diseases and severe hypoxic-ischemic encephalopathy. For minimizing pain, all received non-pharmacological measures, however 8 (12.31%) additionally received pharmacological agents. The majority received enteral feeding during palliation (66.15%), frequently with the mother's milk (93.02%). Nearly three-fourths (76.92%) were ventilated, with 90% of them receiving invasive ventilation. Memorabilia including footprints, photographs or infant personalized items were accepted by 53 families (81.53%). One hundred and nineteen (44.74%) neonates died, and bereavement support was extended to 113 (95%) of them.

CONCLUSIONS

Parallel care model integrating NPC in NICU settings is achievable in collaboration with pioneering centers. This model helps support a large number of neonates in high-burden NICUs ensuring early initiation of NPC.