Goal-Concordance in Children with Complex Chronic Conditions

Area of Science:

• Pediatric complex chronic conditions
• End-of-life care delivery
• Healthcare disparities

Background:

• Children with complex chronic conditions often require intensive medical care.
• End-of-life (EOL) care aims to align with patient and family goals.
• Goal-concordant EOL care is crucial for quality of life in pediatric patients.

Purpose of the Study:

• To characterize the delivery of goal-concordant end-of-life (EOL) care for children with complex chronic conditions.
• To identify factors associated with goal-concordance in pediatric EOL care.

Main Methods:

• Retrospective review of goals of care discussions for 272 children with complex chronic conditions who died at a tertiary hospital.
• Assessment of goals of care and code status before and within 72 hours of death.
• Coding of discussions into categories: full interventions, considering palliation, planned transition to palliation, or active transition to palliation.

Main Results:

• 82.2% of children with documented goals of care received goal-concordant EOL care.
• Black children had over 8 times higher odds of receiving goal-discordant care compared to White children.
• Significant shift towards palliation and Do Not Resuscitate (DNR) status in the final 72 hours of life.

Conclusions:

• The majority of children with complex conditions received goal-concordant EOL care.
• Significant racial disparities exist, with Black children facing higher rates of discordant care.
• EOL care planning effectively shifted towards palliation in the final days of life.