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Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit
Megan Quinn1, Alyssa B Weiss, Janice D Crist
1The University of Arizona College of Nursing, Tucson.
Insights
Early palliative care (PC) in the neonatal intensive care unit (NICU) should include all infants, not just those expected to die. Key elements involve shared decision-making and coping support for families.
Area of Science:
- Neonatal intensive care
- Palliative care
- Family-centered care
Background:
- Palliative care (PC) in neonatal intensive care units (NICUs) is often limited to infants with terminal prognoses.
- Current standards advocate for early PC initiation for any condition impacting quality of life.
Purpose of the Study:
- To assess early PC practices across diverse populations.
- To identify transferable elements of early PC for neonates and their families.
- To demonstrate the practical application of these elements in neonatal care.
Main Methods:
- Conducted comprehensive literature searches from 2016-2019.
- Utilized keywords including palliative care, early PC, neonate, NICU, perinatal PC, pediatric PC, family-centered care, advanced care planning, palliative care consultant, and shared decision-making.
Main Results:
- Early PC is an emerging practice across adult, pediatric, and perinatal fields, with positive family feedback.
- Essential components of early PC in the NICU include shared decision-making, care planning, and distress management.
- Evidence supports extending neonatal PC to include non-terminal diagnoses and earlier intervention.
Conclusions:
- Fully involving parents in care planning and decision-making is crucial for early PC.
- Providing structured support for parental coping with distress is essential.
- Future research should evaluate early PC strategies for efficacy and involve parent stakeholders in program development.
Background:
Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.
Purpose:
To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice.
Search Strategy:
Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making.
Findings:
Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care.
Implications For Practice:
Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC.
Implications For Research:
As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research.
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