Financial burden at end of life: Findings from interviews with caregivers of patients with cancer.

Abstract

14 Background: Studies have described financial burden during and after cancer treatment, but little data are available on financial burden to patients and caregivers at end of life. We conducted a qualitative study with bereaved caregivers and discussed the impact of cancer-associated medical and nonmedical costs on family finances. Methods: From October-December 2017, we audio-recorded semi-structured phone interviews with 35 adults who were primary caregivers for a family member who died with cancer (July-December 2016). We asked about ability to meet costs of care. Drawing from previous studies, we defined substantial financial burden as incurring debt, selling assets or draining savings to meet health care costs. Two analysts coded transcripts using qualitative content analysis and summarized results as major themes. Results: Patients ranged from 30-88 years old, caregivers 34-85. Most caregivers were white (91%), female (63%) and spouses (89%). Ten patients (29%) were insured commercially, 24 (69%) had Medicare, and one (2%) had Medicaid. Ten caregivers (29%) reported substantial financial burden, irrespective of patients’ insurance coverage. Issues associated with substantial financial burden were: 1) insurance hurdles: “my husband’s dying and…I have to run interference with insurance companies, which is frustrating;” 2) limited financial resources: “It is hard when…you really don't have a lot of savings because…you never really made a lot of money” and 3) financial burden that continues after the patient’s death : “I went broke, basically, looking after my parents.” “We lost two incomes and we had to live on our savings.” Three other caregivers noted their family did not experience financial burden because they switched health insurance plans or had a supplemental insurance plan. Conclusions: In this pilot study of caregivers of advanced cancer patients, a substantial portion of commercially insured patients and Medicare enrollees with limited savings and income reported financial burden associated with cancer treatment and end-of-life care that persisted after the patient’s death. Future research is needed to determine best ways to mitigate financial burden among patients and their survivors.