With advancements in neonatology, patients in the neonatal intensive care unit (NICU) are living in the hospital with complex life-limiting illnesses until their first birthday or beyond. As palliative care (PC) becomes a standard of care in neonatology, a level IV NICU developed an interdisciplinary PC team with the mission to ease the physical, mental, and moral distress of the patients, families, and staff. This case report highlights the teamwork and long-term palliative care and ultimately end-of-life care that an infant received by this dedicated NICU palliative care team.
This case discusses a premature ex-27-week gestation male infant who initially presented to the emergency department at 5 months of age with significant tachypnea, increased work of breathing, and poor appetite.
The primary diagnosis was severe pulmonary vein stenosis resulting in severe pulmonary hypertension.
The severity of the infant's pulmonary vein stenosis was incurable. He required substantial life-extending surgical procedures and daily intensive care interventions. In addition to his life-extending therapies, the infant and his family received palliative care support by the NICU PC team and the hospital-wide PC team (REACH team) throughout his admission. This was specialized care that focused on easing pain and suffering while also addressing any social/emotional needs in the infant, his family, and in the hospital staff. The PC teams also focused on protecting the families' goals of care, memory making, and providing a positive end-of-life experience for the infant and his family. The infant's end-of-life care involved providing adequate pain and symptom management, education, and communication to his family about the dying process and allowing unlimited family time before and after his death.
After 11 months in the NICU and despite aggressive therapies, he required more frequent trips to the cardiac catheterization laboratory for restenosis of his pulmonary veins. He was dependent on iNO to treat his pulmonary hypertension and he continued to require an ICU ventilator. His parents ultimately decided to pursue comfort care. He died peacefully in his mother's arms.
The American Academy of Pediatrics and the National Association of Neonatal Nurses both have statements recommending that palliative care be standard of care in NICUs. Establishing a NICU-dedicated interdisciplinary PC team can improve outcomes for infants and families living in the NICU with complex life-limiting illnesses.