The results of this study revealed that only a few (approximately 6–9%) patients with cancer in Japan withdrew from or changed the cancer treatment that was recommended by their physicians or that they opted to receive for financial reasons. However, in patients with financial difficulties or concerns due to cancer treatment, there was a significant correlation between their concerns and withdrawing from or changing treatment. Furthermore, it became clear that the patients’ subjective indices might have a stronger influence on withdrawing from or changing treatment than their objective financial situation. The strength of our results is the fact that they reflect the entire experience from cancer diagnosis to end-of-life, and not only a particular phase of cancer treatment.
In this study, approximately 6–9% of patients with cancer withdrew or changed their cancer treatment to some degree for financial reasons during their entire treatment period. This result may reflect the strength of the Japanese health insurance system. A previous study  from the United States reported that 7–9% of patients had altered the care recommended by their physician, such as not having a test and/or procedure or missing a clinical or chemotherapy appointment. Considering that our results also included respondents who answered, “some of the time” and “not very often”, relatively fewer participants in this study withdrew from or changed cancer treatment compared with that study. However, it should be noted that the previous study was based on patient-reported outcomes, whereas the present study was based on responses from bereaved family members. In addition, the previous study was conducted in the United States, where the out-of-pocket costs for patients are substantial and not all patients with cancer are insured . In addition, few studies have investigated the financial burden of end-of-life care [14, 15], whereas a systematic review reported greater financial toxicity among patients with early-stage disease and/or more severe cancers . The present study did not ask about the specific period of cancer treatment, but rather the entire period. Our results suggest that not all patients’ financial burdens are well managed under the Japanese health-care system.
In our study, the treatments that patients had wanted to receive before withdrawing or changing treatment for financial reasons included unproven cancer treatments, such as vitamins, homeopathy, and unproven immunotherapy (n = 10, 37%), and advanced medical treatments, such as proton beam therapy and heavy ion therapy (26%), neither or which are covered by insurance in Japan at the time the present survey was conducted. On the other hand, the percentage of patients who had difficulty continuing treatment that is covered by insurance was small. Again, it is difficult to compare the results as there are few reports of treatment withdrawal or change in other countries; however, the results of our study reflect the characteristics of the Japanese health-care system. Although unproven treatments and some advanced medical treatments are not covered by insurance in Japan, patients can receive standard treatment under the universal health-care system. Previous studies from Japan reported that almost half of cancer patients used complementary and alternative medicine (CAM) regardless of whether they were of proven efficacy and safety [17, 18]. Hyodo et al. indicated that oncologists must keep CAM in mind due to the high prevalence of usage by cancer patients . On the other hand, Suzuki and colleagues reported that these uninsured treatments are often expensive, and approximately 30% of patients and families considered them a financial burden . Although patients’ wishes should be respected as much as possible in regard to uninsured treatments, it is important to ensure that patients receive the standard treatments recommended by their physician, and that they do not have to withdraw from or change treatment because of a financial burden.
Moreover, in this study, there were significant correlations between the patients’ experiences regarding financial difficulties and their having to withdraw/change treatment. In addition, our results indicated that patients with financial difficulties were more likely to withdraw or change their treatment when the treatment had been suggested by their physician rather than being chosen by them. Therefore, medical staff should consider the financial difficulties of patients in relation to treatment, i.e., financial toxicity, as a serious side effect and assist patients in their decision-making by taking their socioeconomic background into consideration . It might also be advisable to refer patients to specialists, such as medical social workers, so that they can receive and continue the treatment they need.
Finally, the study results suggested that subjective items used to evaluate the financial status of the patients, such as “whether the patient had financial concerns”, “whether the patient had cut down on his/her living expenses to pay for cancer treatment”, and “whether the patient or family had consulted with medical staff about financial issues”, were significantly related to withdrawing from or changing cancer treatment, whereas objective items, such as the duration of care received and annual income, were not. This indicates that the reason a patient decides to withdraw from or change cancer treatment might often be difficult for the medical staff to notice. Hence, medical staff might need to talk to patients to understand their subjective financial situation and introduce available support systems. In addition, previous studies have indicated that there are often barriers in terms of employment of cancer survivors.
In Japan, the out-of-pocket costs for patients are lower because of the medical system, so it seems that withdrawing from or changing cancer treatment occurs less frequently than in other countries. A systematic review of the financial toxicity associated with a variety of cancer diagnoses in countries with publicly funded health care reported out-of-pocket costs of 273 USD per month, even in countries with the most inexpensive health care . As mentioned previously, Japan has a unique system that includes a “ceiling amount” for high-cost medical expenses, which limits monthly out-of-pocket costs to approximately 100–2,500 USD. Although no reports from Japan were included in the previous review, Japan could be considered one of the countries with the lowest out-of-pocket cancer costs. However, a small number of patients still had to withdraw from or change the treatment recommended by their physician because of a financial burden. Therefore, it might be necessary to improve health-care policies in Japan so that fewer patients with cancer experience financial burdens/toxicity when undergoing treatment.
This study had several limitations. First, the participants were limited to those who had lost their loved ones in palliative care units in Japan. Second, there was a potential bias due to missing data from non-responders (response rate: 60%). Third, we could not discuss causality because of the cross-sectional study design. Fourth, the financial background of the patients, such as employment status, might have changed depending on their duration of care and disease condition.