Goals of Care Discussion Characteristics and Disparities in Children With Medical Complexity

Children with medical complexity (CMC) have disproportionately high health care utilization and mortality. Goals of care (GOC) discussions improve goal concordance and subjective outcomes for CMC and their caregivers; however, little is known about the frequency or characteristics of GOC discussions in CMC. We sought to define GOC discussion frequency and attributes in CMC and identify patient characteristics that may influence GOC discussion occurrence.

This was a single-institution retrospective cohort study including CMC with at least 1 complex chronic condition (CCC) and 1 hospitalization in 2021. GOC discussion documentation prior to or during 2021 was identified by structured chart review. GOC discussion frequency and attributes were compared by category of patient medical complexity. Patient characteristics were analyzed as predictors of GOC discussion occurrence.

Out of 1235 CMC, documented GOC discussions were uncommon (22%) and 70% occurred in the intensive care unit. In patients who died, 78% of GOC discussions occurred within 6 months of death. In multivariable regression analysis, increased odds of GOC discussion occurrence were observed in CMC who died (P < 0.001), spent fewer days at home (P < 0.001), had ≥4 CCCs or technology dependence (P < 0.001), were uninsured (P = 0.008), or identified as Black (P < 0.001), Hispanic (P = 0.02), or non-Hispanic Other race (P = 0.001).

GOC discussions in CMC were infrequent and typically occurred around critical illness or death. Increased GOC discussion occurrence in racial and ethnic minority CMC may be a proxy for disparate morbidity and mortality and indicates racial and ethnic differences in communication regularity and intensity that warrant further investigation.