Objectives: An increasing number of children are living with complex chronic diseases (CCDs) due to medical advances. Despite a need for code status discussions (CSDs), there is great variability in the frequency and documentation of such conversations. The objective was to identify gaps in the documentation of CSDs within the electronic health record (EHR), focusing on patients with CCDs. Methods: This was a retrospective review of all patients admitted from the emergency department of a tertiary care children's hospital in 2016. An EHR query using the Apache Hadoop cluster and manual review identified documentation of CSDs, including (1) code status orders, (2) advance directives, and (3) CSDs in provider notes. Patient complexity was stratified using the Pediatric Medical Complexity Algorithm 3.0. Comparative analysis was performed using chi-square, Kruskal-Wallis tests and multivariable logistic regression. Results: There were 12,648 unique patients of whom 4157 (32.9%) had CCD. Only 209 (1.7%) patients had a code status documented, of whom 200 (95.7%) had CCD. Of 528 (4.2%) patients ≥18 years of age, 428 (81.1%) had CCD and only 65 (12.3%) had CSDs. Palliative care consultation increased odds of CSDs (OR: 21.4, 95% CI: 13.8-33.2, p < 0.0001), whereas African American race decreased odds of CSDs (OR: 0.42, 95% CI: 0.27-0.64, p < 0.0001). Conclusions: Among admitted pediatric patients, most do not have documentation of CSDs, including those with CCD and patients ≥18 years of age. Improvements in both frequency and consistency of CSD documentation are needed to inform the family-centered care of patients living with CCDs.
Keywords: advance care planning; electronic health record; medical home; palliative care; patient-centered care.