Intensity of Care at the End-of-Life in Pediatrics: A Single Center Analysis With Implications for Advanced Care...

Area of Science:

• Pediatric Oncology
• Palliative Care
• Healthcare Quality Improvement

Background:

• Medical advancements improve pediatric disorder outcomes but introduce end-of-life care challenges.
• Ethical, economic, and medical complexities impact children's quality of life during end-of-life care.
• Quality of care for pediatric patients with malignant and non-malignant conditions at the end of life requires examination.

Purpose of the Study:

• To examine the quality of end-of-life care for children with malignant and non-malignant conditions.
• To identify gaps in advanced care planning and palliative care integration.
• To assess healthcare services utilization in pediatric end-of-life care.

Main Methods:

• Retrospective cohort analysis of children's deaths over two years (December 2021 - December 2023).
• Inclusion of all pediatric deaths at a tertiary center in Saudi Arabia.
• Data collection on demographics, medical history, end-of-life care, and healthcare utilization.

Main Results:

• 302 pediatric deaths analyzed; 42% were infants. Cardiac diseases and malignancy were most frequent conditions.
• Two-thirds lacked advanced directives, and most had Do-Not-Attempt-Resuscitation (DNAR) orders formalized in the ICU.
• Majority died in ICU with intensive care until death; Palliative Care Team involved in only 27.9% of cases.

Conclusions:

• Significant gaps exist in advanced care planning and timely goals of care discussions.
• Suboptimal early integration of specialized palliative care impacts symptom burden and family distress.
• Delays in palliative care referral and involvement affect the fulfillment of children's and families' end-of-life wishes.