A Paucity of Code Status Documentation Despite Increasing Complex Chronic Disease in Pediatrics

Area of Science:

• Pediatric Healthcare
• Medical Ethics
• Health Informatics

Background:

• Medical advances have increased the number of children with complex chronic diseases (CCDs).
• Code status discussions (CSDs) are essential for these patients but show significant variability in frequency and documentation.
• Gaps in CSD documentation within electronic health records (EHRs) require investigation.

Purpose of the Study:

• To identify deficiencies in the documentation of code status discussions (CSDs) within the electronic health record (EHR).
• To focus on pediatric patients with complex chronic diseases (CCDs).

Main Methods:

• Retrospective review of pediatric patients admitted from the emergency department in 2016.
• Utilized EHR query (Apache Hadoop cluster) and manual review to identify documented CSDs (orders, advance directives, provider notes).
• Stratified patient complexity using the Pediatric Medical Complexity Algorithm 3.0 and performed comparative analysis.

Main Results:

• Out of 12,648 patients, 4157 (32.9%) had CCDs; only 209 (1.7%) had documented CSDs, with 95.7% of those having CCDs.
• Among 528 patients aged ≥18 years, 81.1% had CCDs, but only 12.3% had CSDs.
• Palliative care consultation increased CSD odds (OR: 21.4), while African American race decreased them (OR: 0.42).

Conclusions:

• Most admitted pediatric patients, including those with CCDs and older pediatric patients, lack documented CSDs.
• Significant improvements are needed in the frequency and consistency of CSD documentation.
• Enhanced CSD documentation is vital for effective family-centered care for children with CCDs.