Bereaved parents’ perspectives on financial toxicity at end-of-life for children with cancer.

Abstract

287 Background: Families of children with cancer often experience financial toxicity. However, little is known about families’ experiences with financial toxicity at end-of-life (EOL). Therefore, we qualitatively explored bereaved families’ experiences related to financial toxicity. Methods: We performed a secondary analysis of semi-structured interviews of bereaved parents about their perspectives on high-quality EOL care. The interviews were conducted with bereaved parents in California and Alabama whose child (0-21 years at the time of death) died of cancer ≥6 months before the interview. Quotes related to financial experiences were identified and then grouped thematically. Results: Fifty-five parents, representing forty-eight children were interviewed. Twenty-eight parents (51%) were recruited in California and twenty-seven (49%) in Alabama. The majority of participants were non-Hispanic White (29; 52%), fourteen (25%) were Hispanic, and twelve (22%) were Black. The most common cancer diagnoses were non-central nervous system solid tumors (18, 38%). Children died at a mean age of 11 years (SD=6 years) and a median of 4 years (IQR=2-8 years) prior to the interview. Almost all families (52, 95%) discussed themes related to financial toxicity. Parents identified transportation, housing, other basic needs, funeral costs, and medical costs as contributors to financial toxicity at EOL. Barriers to financial wellness included battling insurance companies, insufficient financial support from the hospital, and the cumulative financial toxicity of treatment. Many parents discussed how the hospital and community served as facilitators of financial wellness by connecting them with resources and providing financial support. In some cases, finances prevented families from accessing services such as hospice care mental health support; financial constraints also affected EOL decisions. Conclusions: Almost all families discussed themes related to financial toxicity, despite not being specifically asked about financial toxicity. In particular, families were financially impacted by basic needs, medical bills, and funeral costs at the end of their child’s life. They identified numerous community and hospital-based barriers and facilitators of financial wellness. It is critical that pediatric oncology programs routinely screen for financial hardship at EOL (and into bereavement). Further research is also needed on how best to support these families’ financial struggles at this challenging time.