Association of Palliative Care Timing With End-of-Life Quality in Children With Heart Disease

Area of Science:

• Pediatric Cardiology
• Palliative Care
• Healthcare Quality Improvement

Background:

• Children with heart disease face high mortality risks and parental concerns about end-of-life (EOL) suffering.
• Pediatric palliative care (PPC) is recognized for improving EOL quality in pediatric oncology.
• The impact of early PPC on EOL quality for pediatric heart disease patients remains unexamined.

Purpose of the Study:

• To assess the association between early PPC involvement and EOL quality indicators in children with heart disease.
• To identify potential differences in EOL care based on the timing of PPC integration.

Main Methods:

• Retrospective review of 140 children (0-21 years) who died in a cardiac ICU from 2014-2022.
• Manual extraction of EOL characteristics and quality indicators from electronic medical records.
• Comparison of EOL quality indicators between early PPC (≥30 days before death) and late PPC (<30 days before death) groups.

Main Results:

• 54% of children received early PPC, while 46% received late PPC.
• No significant differences in most EOL quality indicators were observed between early and late PPC groups.
• Children receiving early PPC were less likely to be intubated within 14 days of death (40% vs. 63%, P=0.006).

Conclusions:

• Current EOL quality indicators, often derived from pediatric oncology, may not be suitable for children with heart disease due to differing disease trajectories.
• There is a critical need to establish specific, high-quality EOL care indicators tailored to the unique needs of pediatric heart patients.
• Further research should focus on developing and validating appropriate EOL quality metrics for this vulnerable population.