The meaning of life prognosis disclosure for Japanese cancer patients: a qualitative study of patients’ narratives

Objective: Recently, disclosure of cancer diagnosis is common in Japan, but significant variability in patient preference of prognostic disclosure poses difficult questions for doctors. The aim of this study was to understand the reasons for wanting or not wanting to know life prognosis and how the information was interpreted and utilized by the patients.

Methods: The study was based on narrative interviews with 42 women with breast cancer and 49 men with prostate cancer, in varying stages. A qualitative and interpretive approach was taken, combining thematic analysis with constant comparison.

Results: While some of the participants voluntarily asked for prognosis to prepare themselves for the end of life, others were shocked by unexpected and unilateral disclosure. Some obtained prognostic information from books and websites. Some preferred to remain unaware of life prognosis, partly because they feared it would become a self-fulfilling prophecy.

Discussion: The major problem underlying the practice of prognostic disclosure is the absence of mutual understanding of how such information will be utilized. These findings affirm that it should be used to empower patients to participate in the decision-making process.