The deceased patients’ average age was seventy (S.D. = 13.14), 52% were women, and 49% had academic education. Some 42% were totally or almost totally incapacitated, 32% functioned with difficulty, and one-fourth were able to carry out Activities of Daily Living. Around 56% of patients’ households had strong or rather strong economic capacity; all the others reported some or considerable difficulty in this regard. Eighty-four percent of those who died from cancer incurred OOP expenses on care during the patients’ last half-year of life (Table 1).

Table 1 Demographic, socioeconomic, and functional characteristics of persons who died from cancer (percent), N = 491

As for direct caregiving expenses, 42% paid OOP for medicines, 32% for a private caregiver, and 9% for a private nurse. Families also ran up indirect expenses for care, mainly when the patient was in hospital. Thus, 70% paid OOP for traveling to the hospital and back, 60% for food away from home, and 12% for overnight accommodations (Fig. 1).

Fig. 1
figure1

Out-of-pocket spending by persons who died from cancer and by their families in the patients’ last half-year of life (percent), N = 491. “Other” denotes financial expenses for other needs occasioned by the illness (e.g., consulting with a psychologist and mental care)

The probability of having to pay out of pocket for a medication was high and significant among patients who were unable to remain alone at home (OR = 1.268, 95% CI = 1.031–2.129, p < 0.01) and those less able to make ends meet (OR = 0.798, 95% CI = 0.643–0.990, p < 0.05). The likelihood of spending OOP for a private caregiver was high and significant among the incapacitated (OR = 1.371, 95% CI = 0.948–1.985, p < 0.1), among patients who could not remain at home alone during the day in the last half-year of their lives (OR = 4.305, 95% CI = 2.012–9.212, p < 0.01), and for patients who had neither medical nor nursing-care insurance (odds ratio = 1.893, 95% CI = 1.069–3.349, p < 0.05). The likelihood of OOP expenditure on a private nurse was significant and rose commensurate with the patient’s age (OR = 1.028, 95% CI = 0.999–1.059, p < 0.1) and for patients who lacked private insurance (medical or nursing-care) (OR = 3.299, 95% CI = 1.312–8.291, p < 0.05) (Table 2).

Table 2 Probability of out-of-pocket expenditure, by purposes (odds ratios) (95% CI) (Logit model)

In regard to the economic burden borne by those who incurred OOP expenses, one-third of those who spent OOP on a private caregiver did not find this expense burdensome, roughly 40% of those who spent OOP on a private nurse did not see this as burdensome, while among those who spent OOP on medicines, one in five felt no financial burden at all on this account. More than 55% of those who spent OOP on a private caregiver considered it very burdensome, roughly 41% of those who spent OOP on a private nurse considered it very burdensome, whereas more than half of those who spent OOP on medicines found it severely burdensome (Table 3).

Table 3 Prevalence of persons who spent out of pocket on health necessities, by extent of financial burden (percent)

The average outlay during the six-month period for medicines was US$5800 (S.D. $8500; median $1800). The average expenditure on a private caregiver during the last half-year of the patients’ lives was $8000 (S.D. $7300; median $6000) and on a private nurse $2800 (S.D. $5000; median $440). The average expenditure on medicines, a private caregiver, or a private nurse during the six-month period among those who reported this expenditure as not financially burdensome at all was USD 2449, USD 6277 and USD 591, respectively. The average expenditure on medicines, a private caregiver, or a private nurse during the six-month period among those who reported this expenditure highly burdensome was USD 11,144, USD 8941 and USD 5153, respectively (Table 4).

Table 4 Out-of-pocket expenditure on necessities matters, by extent of financial burden (USD)

The probability of a financial burden on patients and relatives due to OOP spending on a private caregiver was higher among patients who were unable to remain alone during the day (OR = 3.086, 95% CI = 1.126–8.453, p < 0.05). The inclusion of information about patients’ having health insurance shows that the financial burden was greater among those who had no insurance (OR = 2.112, 95% CI = 0.879–5.074, p < 0.1) than among those who carried supplemental health coverage. It is the inclusion of information about the household’s income that makes the insurance coverage not significant, probably due to the high correlation between them. It shows that the more easily a household makes ends meet or if it has above-average income, the less likely it is that the patient and their family will incur a financial burden for OOP spending on a caregiver (OR = 0.646, 95% CI = 0.448–0.930, p < 0.05 and 0.669, 95% CI = 0.484–0.925, p < 0.05, respectively). In addition to all these, it is found that the probability of a financial burden is smaller when the patient dies at home (OR = 0.512, 95% CI = 0.244–1.072, p < 0.1 in Model 1; OR = 0.558, 95% CI = 0.278–1.083, p < 0.1 in Model 2) (Table 5).

Table 5 Probability of financial burden on patient and family members due to out-of-pocket expenditure on private caregiver (odds ratio) (95% CI) (Ordered Logit model)

The probability of a financial burden on a patient and his or her family due to OOP payment for medicines is smaller among well-educated patients (OR = 0.0.543, 95% CI = 0.299–0.985, p < 0.05 in Model 1; OR = 0.560, 95% CI = 0.313–0.998, p < 0.05 in Model 2) and higher among the incapacitated (OR = 1.377, 95% CI = 0.960–1.975, p < 0.1) (Table 6). Furthermore, the inclusion of information about the household’s financial situation shows that the more easily the household makes ends meet or has above-average income, the less likely it is to incur a financial burden by paying OOP for a caregiver (OR = 0.527, 95% CI = 0.387–0.720, p < 0.01 in Model 1 and OR = 0.679, 95% CI = 0.518–0.892, p < 0.01 in Model 2, respectively) (Table 6).

Table 6 Probability of financial burden on patient and family members due to out-of-pocket expenditure on medications (odds ratio) (95% CI) (Ordered Logit model)

The probability of a financial burden on a patient and his or her family due to any of these three OOP payments (medicines, private caregiver, or private nurse) is higher among the incapacitated (OR = 2.611, 95% CI = 1.517–4.495, p < 0.01 in Model 1, OR = 1.857, 95% CI = 1.090–3.164, p < 0.01 in Model 2). Furthermore, the more easily a household makes ends meet or if it has above-average income, the less likely it is to incur a financial burden by paying OOP for any of these health necessities (OR = 0.553, 95% CI = 0.422–0.724, p < 0.01 and OR = 0.688, 95% CI = 0.546–0.868, p < 0.01, respectively) (Table 7).

Table 7 Probability of financial burden on patient and family members due to out-of-pocket expenditure on medications, private caregiver, or private nurse (odds ratio) (95% CI) (Ordered Logit model)

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