Development of an Intervention to Minimize Financial Burden at the End of Life: Results from Four Data Sources

BACKGROUND AND PURPOSE:  Economic security is a key determinant of life satisfaction and well-being for older adults.  However, household savings, income, and other financial assets become at risk when a life-threatening or life-limiting illness occurs. A majority of older adults express fear that their finances will run out, and the potential for economic risk due to illness is higher among historically disadvantaged groups of older adults, particularly women and African-Americans. Although researchers have explored the correlates of financial burden at the end of life, past studies are limited by their reliance on cross-sectional data, small sample sizes, and sub-optimal assessments of financial assets. The cost implications for economic drivers have been evaluated regarding savings for providers and insurers—but not families. The aims here were to identify factors that impact financial security of households at the end of life, and to develop a translatable intervention to identify and support families at risk for financial burden when facing a life-threatening or life-limiting illness. 

METHODS:  Using Protheroe’s intervention development approach, we conducted four empirical approaches (1. secondary data analysis; 2. systematic review of the literature; 3. environmental scan; 4. a mixed methods assessment of current practices) to understand the problem of financial burden and inform the identification of risk factors, modifiable factors, and resources. The secondary data analysis used the nationally representative Health and Retirement Study (HRS) to model the impact of end-of-life care on families by using a valid and comprehensive estimate of household assets and subjective assessments of financial burden. The systematic review used the Cochrane approach to review 939 abstracts and 182 full-text articles on financial burden. The environmental scan reviewed economic security interventions and resources that assist patients and families. Finally, semi-structured interviews with end-of-life professionals were conducted to evaluate clinical interventions addressing financial burden in families and to ascertain useful elements and whether or not strategies are translatable across medical settings. 

RESULTS: From the secondary data analysis and systematic review, being young, unmarried, female, unable to work due to illness (for both patient and caregiver), a long-stay nursing home patient, repeated hospitalizations, and the pursuit of radiation therapy were identified as potential financial risk factors. Health insurance did not necessarily buffer families against financial burden. From the assessment of current practices, financial matters were often taboo for families and professionals, hampering communication and assessment. Many practitioners do not assess for financial risk, although its relevance is undisputed. Financial concerns are often experienced within crisis, and practitioners struggle with limited time and competing interests. Family perceptions and behaviors were seen as modifiable and most amenable to intervention. Potential resources include public assistance, Medicaid, debt counseling, budgeting help, charitable assistance, reverse mortgage, and benefits assessments.

CONCLUSIONS AND IMPLICATIONS: This study examines potential variables predicting financial burden for patients and families when they face life-threatening or life-limiting illness. Understanding the risk factors, including those amenable to change, and improving clinical skills in broaching and addressing financial distress with patients and families, will lead to more effective social work practice.