“I Could Never Prepare for Something Like the Death of My Own Child”: Parental Perspectives on Preparedness at End of Life for Children With Complex Chronic Conditions

Abstract

ContextChildren with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL). ObjectivesThis study aimed to elucidate aspects important to preparedness at EOL among bereaved parents of children with CCCs. MethodsIn this cross-sectional study, parents of children who received care at Boston Children's Hospital and died between 2006 and 2015 completed 21 open-response items querying communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Additional demographic data were extracted from the child's medical record. An iterative multistage thematic analysis of responses was utilized to identify key contexts, conditions, and themes pertaining to preparedness. ResultsOne hundred ten of 114 parents responded to open-ended items; 63% (n = 69) had children with congenital or central nervous system progressive primary conditions for a median of 7.5 years (IQR 0.8–18.1) before death. Seventy-one percent (n = 78/110) had palliative care involvement and 65% (n = 69/106) completed advance care planning. Parents described preparedness as a complex concept that extended beyond “readiness” for their child's death. Three domains emerged that contributed to parents' lack of preparedness: 1) chronic illness experiences; 2) pretense of preparedness; and 3) circumstances and emotions surrounding their child's death. ConclusionsMost bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond “readiness.” More research is needed to identify supportive elements among parents facing their child's EOL.