Financial hardship for patients with cancer and caregivers at end of life in the USA: narrative review

Background Patients and their families face financial hardship during cancer treatment, which may intensify at end of life (EOL) due to increased symptoms and care needs. We undertook a narrative literature review to describe the current understanding of the causes, impacts and factors associated with financial hardship at EOL. We identify gaps in research, policy and clinical practice and propose steps to mitigate financial hardship for patients and caregivers at EOL. Methods We conducted a Medline search to identify US studies since 2000 that examined EOL financial hardship for patients with cancer and their caregivers. Results Twenty-seven adult and four paediatric studies met review criteria. Adults with cancer and their caregivers face significant financial hardship at EOL and in bereavement, especially due to employment changes and informal caregiving time costs. Financial hardship may be higher for younger caregivers and for patients who are uninsured, low income, rural, with high symptom burdens or with certain cancer types. The few paediatric studies showed high financial hardship and employment impact lasting well beyond a child’s death. Conclusions There is limited literature examining financial hardship at EOL in the USA, especially in paediatrics. Priorities for future research include longitudinal studies in diverse populations of patients with cancer and informal caregivers using standardised financial hardship measures. Policies to address financial hardship at EOL, especially with hospice care, should include insurance coverage for family caregiving and medical leave policies. There is need for increased financial hardship screening at EOL and in bereavement and a need for financial navigation interventions.