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

CONTEXT: Documented goals-of-care (GOC) conversations promote goal-concordant care; few studies have evaluated the comprehensiveness of this documentation within pediatrics. OBJECTIVE: To evaluate the content of pediatric GOC documentation within a health system. METHODS: 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. RESULTS: 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%). CONCLUSION: 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.

Duke Scholars

Author Erin Eckert  

Author Jessica Ma Medicine, Geriatrics and Palliative Care