Understanding out-of-pocket spending and financial hardship among patients who succumb to cancer and their caregivers

Background In most countries, including those with national health insurance or comprehensive public insurance, some expenses for cancer treatment are borne by the ill and their families. Objectives This study aims to identify the areas of out-of-pocket (OOP) spending in the last half-year of the lives of cancer patients and examine the extent of that spending; to examine the probability of OOP spending according to patients’ characteristics; and to examine the financial burden on patients’ families. Methods 491 first-degree relatives of cancer patients (average age: 70) who died 3–6 months before the study were interviewed by telephone. They were asked about their OOP payments during the last-half year of the patient's life, the nature of each payment, and whether it had imposed a financial burden on them. A logistic regression and ordered logit models were used to estimate the probability of OOP expenditure and the probability of financial burden, respectively. Results Some 84% of cancer patients and their relatives incurred OOP expenses during the last half-year of the patient’s life. The average levels of expenditure were US$5800on medicines, $8000 on private caregivers, and $2800 on private nurses. The probability of paying OOP for medication was significantly higher among patients who were unable to remain alone at home and those who were less able to make ends meet. The probability of spending OOP on a private caregiver or private nurse was significantly higher among those who were incapacitated, unable to remain alone, had neither medical nor nursing-care insurance, and were older. The probability of a financial burden due to OOP was higher among those unable to remain alone, the incapacitated, and those without insurance, and lower among those with above-average income, those with better education, and patients who died at home. Conclusions The study yields three main insights. First, it is crucial that oncology services provide cancer patients with detailed information about their entitlements and refer them to the National Insurance Institute so that they can exercise those rights. Second, oncologists should relate to the financial burden associated with OOP care at end of life. Finally, it is important to sustain the annual increase in budgeting for technologies and pharmaceuticals in Israel and to allocate a significant proportion of those funds to the addition new cancer treatments to the benefits package; this can alleviate the financial burden on patients who need such treatments and their families.