Neuropalliative Care for Neonates

Abstract

Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative care and is directed toward patients and families affected by serious neurologic conditions in the antenatal and immediate newborn period. This review outlines key considerations for neurologists hoping to provide a neuropalliative care approach antenatally, in the neonatal intensive care unit, and around hospital discharge. We explore 4 core domains of neuropalliative care: (1) family-centered communication, (2) prognostication, (3) decision making, and (4) pain and symptom management. We address special considerations in care at the end of life and in varied cultural and practice contexts.

The ALIGN Framework

“…24 This guidance also highlights the potential value of fetal neurology and neonatal neurocritical care models in which child neurology clinicians follow children longitudinally after an initial meeting in the fetal and/or neonatal period. [25][26][27] Parents appreciated when clinicians elicited their communication preferences and baseline understanding of their child's prognosis.…”

Palliative care in neurology patients

“…Perinatal neuropalliative care is a developing field that offers support to fetus, infants, families, and healthcare professionals affected by serious fetal and neonatal neurological conditions 76 . The following are common antenatal (hydranencephaly, holoprosencephaly, congenital hydrocephalus, myelomeningocele, and encephalocele) and postnatal (intraventricular hemorrhage, posthemorrhagic hydrocephalus, hypoxic-ischemic encephalopathy, neuromuscular conditions, perinatal arterial ischemic stroke, neonatal epileptic encephalopathy) conditions, that may require neuropalliative care interventions 77 . Care centers around 4 primary domains: family-centered communication, prognostication, decision-making, and pain and symptom management 77 .…”

“…The following are common antenatal (hydranencephaly, holoprosencephaly, congenital hydrocephalus, myelomeningocele, and encephalocele) and postnatal (intraventricular hemorrhage, posthemorrhagic hydrocephalus, hypoxic-ischemic encephalopathy, neuromuscular conditions, perinatal arterial ischemic stroke, neonatal epileptic encephalopathy) conditions, that may require neuropalliative care interventions 77 . Care centers around 4 primary domains: family-centered communication, prognostication, decision-making, and pain and symptom management 77 . It is important to maintain frequent and consistent family-centered communication, with discussions surrounding prognosis focused on acknowledging and minimizing uncertainty which a common cause of distress for families 78 …”

“…77 Care centers around 4 primary domains: familycentered communication, prognostication, decision-making, and pain and symptom management. 77 It is important to maintain frequent and consistent family-centered communication, with discussions surrounding prognosis focused on acknowledging and minimizing uncertainty which a common cause of distress for families. 78 Palliative care during the perinatal period offers additional support to families navigating complex decision-making during pregnancy and the early newborn period.…”

Clinical Guidance in Neuropalliative Care

“…Antenatal neuropalliative care focuses on diagnostic information, family-centered communication, prognostication, shared decision-making, and pain and symptom management. 22,23 Neonates with major malformations, syndromes, and suspected genetic disorders first recognized after birth are candidates for rapid genomic testing in the NICU. Such testing provides high diagnostic utility but creates new challenges for informed consent and parental decision-making.…”