Content and Comprehensiveness of Goals-of-Care Documentation in Pediatric Patients

Documented goals-of-care (GOC) conversations promote goal-concordant care; few studies have evaluated the comprehensiveness of this documentation within pediatrics.

To evaluate the content of pediatric GOC documentation within a health system.

GOC notes were written between August 7, 2016 and September 8, 2023 for patients ≤18 years old at one academic health system. Notes were identified by related GOC-specific "text markers" in the electronic health record. A pediatric GOC codebook was adapted from existing frameworks. Notes were evaluated for the presence of each of seven components from the codebook. Misfiled GOC notes were excluded from analysis.

A total of 429 notes were written in the inpatient or outpatient setting across pediatric specialties. Most notes were written by the palliative care service (77.9%) and by attending physicians (77.4%). Most patients were <1 (41.0%) or 1-6 years old (23.4%), non-Hispanic (82.9%), and spoke English (90.2%). Of the 91 patients (44.4%) who died before September 8, 2023, the median number of days between their first GOC note and death was 10.3 days (interquartile range (IQR) 1.6-49.0). The median number of GOC components per note was 5.0 out of 7 possible (IQR 4.0-5.5). Frequently documented GOC components were discussion participants (98.1%), goals/fears/priorities (87.6%), and treatment decisions (85.3%). Infrequent components were end-of-life care planning (33.3%) and information preferences (9.8%).

Pediatric GOC notes included most GOC components; however, number of components may not reflect the quality and depth of actual discussions. Future research should assess GOC documentation for pediatric patients from diverse backgrounds.