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

Title

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

Creator

Makinde KW; Silverstein A; Peckham-Gregory E; Kim E; Casas J

Publisher

Journal of Pain and Symptom Management

Date

2024

Subject

infant; Texas; palliative therapy; major clinical study; personal experience; multicenter study; Caucasian; cross-sectional study; Hispanic; medical record review; human; article; child; female; male; terminal care; advance care planning; surgery; ethnicity; race; therapy; date of death; mode of death

Description

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 to 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 multicenter studies are needed to characterize more widespread experiences.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

September List 2024

Collection

Citation

Makinde KW; Silverstein A; Peckham-Gregory E; Kim E; Casas J, “Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life,” Pediatric Palliative Care Library, accessed February 19, 2025, https://pedpalascnetlibrary.omeka.net/items/show/19731.