CHAPTER 91 - Palliative Care Family Support in Neonatology

Abstract

In this chapter we will describe the evidence for palliative care family support beginning in the prenatal period and extending to acute and chronic neonatal intensive care unit (NICU) care and finally to bereavement. Neonatal providers have the unique opportunity to improve family-centered care for patients and families experiencing serious illness in the NICU and to make a long-term impact on NICU families’ lives. For infants who do not survive, neonatal providers may improve the care leading up to death and affect parent grief experiences by facilitating an interdisciplinary palliative approach and supporting families to create meaningful and positive memories despite the limitations of an ICU environment. However, there are challenges to implementing this palliative approach and providing care that is concordant with family wishes. Perinatal palliative care as an additional layer of family support is often delayed until death is imminent, preventing families from experiencing the full range of this layer of support. Beginning with a fetal diagnosis, families require intensive support given the extremely difficult decisions they must make in the event of a life-limiting or life-threatening diagnosis. During a NICU hospitalization, the infant’s clinical state of uncertainty and unknown survival makes decision-making very difficult for families, and they require intensive support to balance their new identity as a “NICU parent” with life and other demands outside of the hospital. Medical advancements have decreased the number of perinatal and infant deaths over time; however, there are now more infants surviving with chronic critical illness, and families continue to require support as their goals of care shift.