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Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

Danielle J Green1, Erin Bennett2, Lenora M Olson1

  • 1Department of Pediatrics, Division of Pediatric Critical Care, University of Utah, Salt Lake City, Utah, United States.

Journal of Pediatric Intensive Care
|February 6, 2023
PubMed

Insights

Pediatric palliative care (PPC) referral for children with complex heart disease is often delayed. Early PPC consultation at diagnosis can improve support and care for these patients and their families.

Area of Science:

  • Pediatric Cardiology
  • Palliative Care
  • Complex Chronic Conditions

Background:

  • Children with complex heart disease face lifelong morbidities, frequent hospitalizations, and early mortality risks.
  • Pediatric palliative care (PPC) offers crucial support for symptom management, decision-making, and advanced care planning.
  • Current PPC referral patterns often occur late in the disease trajectory, limiting potential benefits.

Purpose of the Study:

  • To analyze the timing of pediatric palliative care consultations in relation to diagnosis, complex chronic conditions (CCCs), and death in hospitalized pediatric heart disease patients.
  • To evaluate the impact of delayed PPC referral on patient outcomes and care.

Main Methods:

  • Retrospective analysis of 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult.
  • Data collected on age at diagnosis, age at PPC consultation, number of CCCs, and time to death.
  • Analysis of the location and mode of death.

Main Results:

  • Median age at heart disease diagnosis was 0 days, with a median of two CCCs.
  • Median age at PPC consultation was 77 days, with a median of four CCCs, indicating a significant delay.
  • Median time from PPC consult to death was 33 days; death frequently occurred in the ICU (67%) via withdrawal of life-sustaining therapies (57%).

Conclusions:

  • PPC referral often occurs late, amidst medical complexity and prolonged hospitalizations.
  • Early PPC consultation at the time of heart disease diagnosis is recommended to maximize benefits beyond end-of-life care.
  • Timely PPC integration, especially for neonates and infants with CCCs, may influence the mode and location of death and enhance family support.

Keywords:
advance care planningheart diseaseshospitalized childpalliative carepediatrics

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