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Palliative care in neonatal neurology: robust support for infants, families and clinicians
M E Lemmon1,2, M Bidegain3, R D Boss4,5
1Division of Pediatric Neurology, Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA.
Insights
Palliative care can help infants with neurological injury and their families navigate challenges in the neonatal intensive care unit. This review covers symptom management, communication, and support for these vulnerable patients.
Area of Science:
- Neonatal neurology
- Pediatric palliative care
Background:
- Infants with neurological injury experience unique challenges in the neonatal intensive care unit (NICU).
- Specialty palliative care is becoming more accessible for neonatal patients.
Purpose of the Study:
- To review data on integrating palliative care principles into the care of infants with neurological injury.
- To address key areas including symptom management, prognostic uncertainty, decision-making, communication, and parental support.
Main Methods:
- Literature review of existing data.
- Synthesis of information relevant to neonatal neurology and palliative care.
Main Results:
- Neonatal symptom management is a critical aspect of palliative care.
- Prognostic uncertainty significantly impacts families and requires careful communication.
- Effective decision-making processes and robust parental support are essential.
Conclusions:
- Palliative care principles should be intentionally incorporated into the care of infants with neurological injury.
- Addressing symptom burden, uncertainty, and communication needs improves outcomes for patients and families.
- Enhanced support systems are vital for families navigating the NICU with a neurologically injured infant.
Abstract:
Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principles into the care of infants with neurological injury. Here, we review data regarding neonatal symptom management, prognostic uncertainty, decision making, communication and parental support for neonatal neurology patients and their families.
