Purpose
To clarify the current use of unapproved and unproven cancer treatment (UUCT) among the bereaved families of patients with cancer who died in palliative care units, the financial burden and psychological experiences of the families, and the relationship between patients in palliative care who used UUCT and communication with their physicians’.
Methods
This study was conducted as part of a cross-sectional, anonymous nationwide survey of the bereaved family members of patients with cancer in Japan.
Results
Questionnaires were sent to 1,039 bereaved family members, and responses were received from 661 (64%). Of these, 558 were included in the study after excluding the 103 who did not complete the questionnaire. A total of 7.3% (41 of 558) of patients received UUCT. Of these, 34% (14 of 41) of patients were formed that the treatment was in the research phase, and 49% (20 of 41) were informed that the efficacy of the treatment was unknown. Regarding expectations for UUCT, 61% (25/41) expected to be cured, and 80% (33/41) expected it to slow disease progression. In multivariate logistic regression analysis, more patients received complementary and alternative medicine (CAM) than UUCT (p = 0.024), and patients who could discuss CAM with their doctors tended to receive UUCT (p = 0.054).
Conclusion
Patients with cancer want to be cured and improve their condition, no matter what it takes. These results highlight the challenge of telling patients that UUCT is ineffective and informing them of their prognosis and severe medical conditions.