Pediatric advance care planning: a mixed-methods evaluation of documentation and sharing in current practice

Pediatric advance care planning (pACP) aims to align future care and treatment of children with life-limiting conditions (LLCs) with children’s and their families’ values, goals and preferences. Documenting and sharing pACP elements with healthcare professionals (HCPs) is essential for goal-concordant care. This study evaluates how pACP elements are documented in electronic health records of children with LLCs and shared with other HCPs. A mixed-method study was conducted at a Dutch academic children’s hospital. A retrospective medical chart review examined electronic health records of all children with LLCs who died in 2023, assessing patient characteristics, disease and care characteristics, and pACP elements dating back to the first hospital visit. Structured interviews with primary physicians explored their perspectives on the occurrence, documentation and sharing of pACP in these patients. Eleven thousand, three hundred and thirty notes were screened for 28 patients, written by different HCP types. pACP elements were identified in 127 notes (1%) from 16 patients (57%). Documentation occurred most often during a phase of health deterioration (70%). The most frequently documented pACP element was ‘goals of future care and treatment’ (78%), first recorded a median of 2 years after diagnosis, while ‘preferred location of death’ was least documented (38%). Of the four palliative care domains (physical, psychological, social and existential), the physical domain was most commonly addressed (48%). Individual patient timelines showed three groups: patients without pACP documentation, those with pACP documentation at the end of life, and those with pACP documentation throughout treatment duration. Inter-organizational sharing of pACP elements was rarely documented (26%). Primary physicians (N = 7) reported discussing and sharing pACP elements more often than documenting them. Reasons for under-documentation included avoidance of repetition, unclear responsibility, perceived irrelevance for others, and difficulty capturing complex conversations. Implementation of pACP in pediatric palliative care could be improved. Documentation does not fully reflect actual care, as physicians reported sharing more pACP information with other HCPs both intra-and inter-organizationally than reflected in patient records. Several barriers to documenting and sharing were mentioned, and future studies should focus on developing tools and guidelines to support HCPs in improving documentation and sharing of pACP processes and outcomes.