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Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review

Megan E Doherty1, Liam Power2, Robin Williams3

  • 1Children's Hospital of Eastern Ontario - Pediatrics, Ottawa, Ontario.

Paediatrics & Child Health
|February 5, 2021
PubMed

Insights

Perinatal palliative care supports families expecting infants with life-limiting conditions. Referrals are common, with 99% continuing services, highlighting its essential role.

Area of Science:

  • Medical Specialties
  • Neonatology
  • Palliative Care

Background:

  • Perinatal palliative care is an emerging field within pediatric palliative care.
  • It provides crucial support for families anticipating the birth of a child with a life-limiting condition.

Purpose of the Study:

  • To characterize infants and families referred for perinatal palliative care.
  • To understand referral contexts, including diagnoses, referral patterns, interventions, and outcomes.

Main Methods:

  • Retrospective chart review of infants with prenatal diagnoses of life-limiting conditions.
  • Analysis of referral data over a 10-year period.

Main Results:

  • 85 referrals were made; 99% continued services, indicating high acceptance.
  • Common diagnoses included trisomy 13/18 (24%), CNS malformations (20%), and congenital heart disease (16%).
  • Referrals originated primarily from neonatologists (39%) and maternal-fetal medicine specialists (36%).

Conclusions:

  • Findings confirm known characteristics and offer detailed lifespan data for specific diagnoses.
  • The high continuation rate validates the necessity of perinatal palliative care services.
  • Future research should employ prospective methods to explore decision-making factors for families and physicians.
Abstract

Keywords:
End of life carePalliative carePerinatal carePerinatal deathPregnancyPrenatal diagnosis

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