Patient-centred care prioritises patient autonomy and shared decision-making, and emphasises the importance of informing patients about their illness, even in terminal conditions such as advanced cancer.
However, in Japan, family-oriented autonomy often leads to non-disclosure of cancer diagnoses to patients, driven by the belief that this will protect them from distress.
Although some evidence suggests that informing patients may not adversely affect their quality of life, the effect of family-driven non-disclosure on quality of death (QOD) and quality of care (QOC) remains unclear. We aimed to investigate the impact of diagnosis non-disclosure on QOD and QOC in cancer patients.
This secondary analysis used data from a nationwide mortality follow-back survey of Japanese cancer patients. Family members of deceased patients provided information on diagnosis disclosure, QOD (using the Good Death Inventory), QOC (using the Care Evaluation Scale), and other relevant factors. Propensity score matching was used to address potential selection bias between patients with and without diagnosis disclosure.
This study analysed data from 46,672 family members of deceased cancer patients. Of these, 90.6% of the decedents received an explicit cancer diagnosis (disclosure group). Patients whose diagnoses were explicitly disclosed had significantly higher QOD and QOC than those whose diagnoses were not disclosed.
These findings suggest that open communication about a cancer diagnosis can improve end-of-life care by enabling patients and families to better prepare for death and make informed decisions. In the high-context Japanese culture, mutual expectations and feelings within the social context are typically implicit and not explicitly expressed. Traditionally, many Asian cultures have a general negative attitude toward truth-telling and a preference for a family-centred decision-making style.
While cultural norms in Japan, this highlights the importance of respecting patients’ autonomy and incorporating their preferences into the disclosure process. Meanwhile, the differences in QOD and QOC between the two groups were small, although statistically significant differences were found. Thus, it is difficult to conclude that patients with an implicit cancer diagnosis necessarily have worse QOD or QOC.
In a high-context culture, it may not always be necessary to be verbally explicit about a cancer diagnosis. Uniform communication is undesirable, and individualized communication is desirable, taking into account the fact that even the same Japanese people have different values.
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