Economic hardship at the end of life for families of children with complex chronic conditions

CONTEXT: Many children with complex chronic medical conditions (CCC), though living longer, die prematurely. Little is known about family economic hardship during end of life (EOL), nor associated differences in patterns of care.

OBJECTIVES: To describe the prevalence, experience, and characteristics of families of patients with CCC who report great economic hardship (GEH), and associations with end-of-life care patterns and suffering.

METHODS: We conducted a 183-item cross-sectional survey of bereaved parents of patients cared for at Boston Children's Hospital and chart reviews for each patient. 15 survey items on economic hardship related to financial and material hardships including food, housing, and utility insecurity.

RESULTS: 114 bereaved parents completed the survey (54% response rate) and economic hardship data was analyzed for 105. Nearly a fifth reported GEH. This group was characterized by fewer two parent households. Children from families with GEH had spent more time hospitalized than those without GEH.

CONCLUSION: Economic burden on families of children with CCC correlates with higher health care utilization demonstrating the need for ameliorative resources and preventative measures.

KEY MESSAGE: This brief report provides unique experiences from the end-of-life period from bereaved parents with great economic hardship who cared for children with complex chronic conditions.