Palliative and End-of-Life Disparities for Pediatric Hispanic, Spanish-preferring Patients With Cancer.

Abstract

The influence of ethnicity and language preference on palliative and end-of-life (EOL) experiences in children with cancer is poorly understood. Existing data relies on adult studies and suggests that patients from underserved populations often receive inferior palliative and EOL care, characterized by medically intense care at EOL. This qualitative study explores the EOL experiences of English and Spanish-preferring families of children with poor-prognosis cancers, with the hypothesis that language-based disparities exist. English and Spanish-preferring parents of children with poor-prognosis cancers, and bereaved parents whose children died of cancer within the last 5 years were eligible. Language preference and ethnicity data were obtained from the patient chart and confirmed by self-report during interviews. We conducted 11 interviews with 15 caregivers: 6 in Spanish and 5 in English. Interviews were recorded, transcribed, and analyzed using Braun and Clarke inductive coding approach. Our analysis revealed that many Hispanic, particularly Spanish-preferring families, reported disparities compared with non-Hispanic families, including inconsistent interpreter use, confusion about prognosis and treatment, perceived discrimination, inadequate EOL anticipatory guidance, and dissatisfaction with hospice. The study identifies perceived gaps in our current practices that negatively impact pediatric Hispanic, Spanish-preferring patients and their families. Larger scale studies are needed to further explore the influence of language preference on EOL experiences. There is a critical need to better assess the effective delivery of pediatric palliative care among Spanish-preferring families, and interventions to reduce disparities in EOL/palliative care should be founded on the expressed needs of families who prefer to communicate in languages other than English.