End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms

Abstract

One of the most essential components of end-of-life (EOL) care for neonates is assessing and addressing distressing symptoms. There is limited evidence to guide neonatal EOL symptom management and therefore significant variety in treatment (1-4). EOL neonatal palliative care should include identifying and relieving distressing symptoms. Symptoms to manage at neonatal EOL may include pain using both non-pharmacologic and pharmacologic comfort measures, respiratory distress, secretions, agitation and neurologic symptoms, nutrition and gastrointestinal distress, and skin care. Also of equal importance is communication surrounding familial existential distress and psychosocial care (1, 5-7). Institutions should implement a guideline for neonatal EOL care as guidelines have been shown to decrease variability of interventions and increase use of pharmacologic symptom management (4). Providers should consult with palliative care teams if available for added multidisciplinary support for family and staff, which has been shown to enhance EOL care in neonates (8, 9).

Implementing palliative care, based on family-centered care, in a highly complex neonatal unit

“…It is imperative that clinical guidelines for end-of-life support be created. 28 , 29 In a study published in 2018, NICU professionals in the USA and Canada were surveyed to evaluate the end-of-life care of newborns. The results obtained illuminated the absence of formal end-of-life care guidelines at many institutions.…”

Praxis der perinatalen Palliativbetreuung

“…Zur Messung von Schmerzen und Titration der Therapie stehen eine Reihe von neonatalen Schmerzskalen zur Verfügung (z. B. COMFORTneo, N-PASS, EDIN; Übersicht in [20]). Obwohl die verschiedenen Skalen teilweise nur für akuten oder längerdauernden Schmerz oder bestimmte Gestationsalter validiert sind, ist es in der Praxis meist sinnvoll, sich aus Gründen der Praktikabilität für eine Skala zu entscheiden, die für alle Patienten angewendet wird.…”

Clinician perception of care at the end of life in a quaternary neonatal intensive care unit

“…Evidence supporting optimal pain and symptom management at neonatal EOL is limited. Recent reviews indicate neonatal pain may generally be underestimated due to difficult interpretation of symptoms ( 10 ) and off-label pharmaceutical use ( 11 ). In a mixed-method study examining the unmet needs of bereaved parents in the NICU, parents report that alleviating infant suffering could be improved ( 7 ).…”