Palliative Care Referrals in Cardiac Disease

Area of Science:

• Pediatric Cardiology
• Palliative Care
• Congenital Heart Disease

Background:

• Pediatric advanced heart disease (AHD) is associated with significant end-of-life (EOL) care intensity.
• Integrating pediatric palliative care (PPC) has demonstrated benefits, necessitating characterization of PPC referral patterns and EOL care in AHD.

Purpose of the Study:

• To characterize subspecialty PPC referral patterns.
• To evaluate EOL care in pediatric advanced heart disease (AHD).
• To assess the influence of PPC on EOL care and hospital charges in pediatric AHD.

Main Methods:

• Retrospective cohort study comparing two 3-year epochs (2007-2009 and 2015-2018) of pediatric deaths (<21 years) due to AHD.
• Evaluation of demographics, disease burden, medical interventions, mode of death, and hospital charges.
• Comparison of temporal changes and PPC influence on EOL care.

Main Results:

• PPC referrals increased from 1.3% to 3.6% of admissions and 17% to 58% of deaths between epochs.
• PPC involvement was associated with decreased use of mechanical circulatory support, ventilation, inotropes, and CPR at EOL.
• Children with PPC were more likely to be awake and receiving enteral feeds, with increased advance care planning and lower hospital charges.

Conclusions:

• Pediatric AHD deaths involve high medical intensity, but PPC consultation is linked to less invasive EOL interventions.
• PPC integration in pediatric advanced heart disease care is associated with improved patient comfort and resource utilization.
• Further research is warranted to optimize PPC integration into AHD care pathways.