Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life.

CONTEXT: Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences.

OBJECTIVE: We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred language.

METHODS: We conducted a cross-sectional study of patients who died at Texas Children's Hospital from 2018-2019. Demographics, date of death, and final code status were extracted. Medical complexity prior to admission and mode of death were obtained from chart review.

RESULTS: We included 433 patients. Over one-third were Hispanic (39.3%) with 42.3% preferring Spanish. The majority were White (61.4%) or Black (21.0%). Most patients had significant medical complexity (52.0%) or were infants in their birth admission (29.4%). Half (52.4%) received palliative care; patients with increased medical complexity were more likely to have palliative care involved (p<0.001). There were no differences in palliative care, code status, or mode of death by race. Hispanic patients were less likely to have a full code status (OR 0.42, 95% CI 0.25-0.73). Spanish-speaking patients were more likely to have palliative care involvement (OR 2.05, 95% CI 1.21-3.46) and less likely full code orders (OR 0.24, 95% CI 0.1-0.63).

CONCLUSION: Palliative care services are engaged with most children at end of life and is accessible to marginalized patient groups. Spanish-speaking patients have different code status orders and modes of death at end of life. Further studies are needed to elucidate explanatory factors for differences revealed and multi-center studies are needed to characterize more widespread experiences.