Exploring the financial impact of caring for family members receiving palliative and end-of-life care: A systematic review of the literature

Background: Research regarding the economic dimensions of palliative care is relatively limited. The economic implications of providing informal care are well recognised; however, within the context of palliative care, little is known about the costs and implications of providing care for a loved one at the end of life. Aim: To explore the financial costs and the financial impact of caring for family members receiving palliative/end-of-life care. Design: A systematic literature review of empirical research following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Data Sources: Seven electronic databases were searched from inception to April 2012. Inclusion criteria were as follows: articles relating to the financial costs or implications of family caregiving at the end-of-life care, English language articles, empirical research or systematic reviews and articles relating to adults. Results: The review identified 21 relevant articles; however, evidence relating to the costs and implications of caregiving was relatively limited. The results indicate that the financial costs of caring for someone at the end of life are substantial. Financial costs can result in significant and multidimensional caregiver burden. Various factors were found to mediate the extent of financial burden. Conclusions: This review identified a significant gap in the evidence base regarding the economic implications of providing care to a family member within a palliative care context. Economic costs and implications are likely to be significant, and research to address this gap is urgently needed, particularly given policy initiatives in a number of developed countries to move the provision of palliative and end-of-life care from hospital to community settings.