Describing how children with life threatening complex chronic conditions die

Abstract

Although many pediatric deaths are attributable to accidents and injuries, health-related mortality remains significant, especially for children with complex chronic conditions (CCCs). How do such children die? While numerous studies delineate patterns of care at end of life (EOL) for cancer and congenital heart disease, scant data exist about EOL care for other children with life threatening (LT)-CCCs. DeCourcey et al surveyed parents of children and young adults with non-cancer, non-cardiac LT-CCCs at Boston Children's Hospital and found the majority died in the hospital (62.7%) with over half (53.3%) dying in the intensive care unit. The largest subset of children with LT-CCCs had either congenital and chromosomal disorders (38.6%) or central nervous system (CNS) progressive disorders (37.6%). Although most had palliative care involvement (79.3%), significant differences in patterns of care at EOL were utilized depending upon the LT-CCC. For example, patients with CNS progressive disorders were more likely to die at home and to have palliative care involvement compared with those with static CNS disorders or pulmonary diseases. There are important limitations to this study. First, the vast majority of respondents were white (82.5%), married (80.0%), and Christian (62.1%) with at least some college education (83.8%), which limits generalizability. Second, the study did not determine whether the EOL care was concordant with the needs and desires of the patients and family. Equity demands that all children with LT-CCCs have access to palliative care. Further exploration is needed to determine not only whether it was offered to all, but the reasons for and against utilization, and patient and family satisfaction with the EOL and palliative services that were provided. Sadly, children will continue to die; we have a moral obligation to attend to them in accordance with their and their family's needs and wishes. Article page 196 ▶ Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic ConditionsThe Journal of PediatricsVol. 193PreviewTo characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. Full-Text PDF