Attitudes toward disease and prognosis disclosure and decision making for terminally ill patients in Japan, based on a nationwide random sampling survey of the general population and medical practitioners.

OBJECTIVE: Employing a nationwide cross-sectional survey, we investigated the Japanese general population's attitudes toward disease and prognosis disclosure and related factors. Furthermore, we investigated Japanese medical practitioners' attitudes toward disease and prognosis disclosure for patients and decision making.

METHODS: A nationwide anonymous questionnaire survey was conducted. A total of 5000 individuals were randomly sampled from the general population and 3104 physicians and 6059 nurses were randomly sampled in Japan.

RESULTS: Finally, 2422 people from the general population (response rate, 48%), 1577 physicians (51%), and 3361 nurses (56%) returned questionnaires. Among the general population, 73% of participants answered that they "want to know" about their disease and prognosis when in an incurable disease state. Ninety percent desired direct disclosure and 8% disclosure through their family. However, few medical practitioners answered "patient himself" (physician 3%, nurses 4%) as the person whom they would primarily notify about the disease and prognosis when in charge of a patient with an incurable disease. On the other hand, physicians answered "family" most frequently (59%), whereas nurses most commonly responded, "depends on patient's condition" (63%).

SIGNIFICANCE OF RESEARCH: Several detailed analyses of factors associated with prognosis disclosure were conducted. Japanese physicians need to carefully communicate with the patients individually about whether direct disclosure or disclosure primarily to the family is preferred.