Japanese patients' preferences for receiving cancer test results while in the United States: introducing an advance directive for cancer disclosure.
BACKGROUND: While disclosure of cancer is routine in the United States, it is not in Japan. The primary goals of this investigation were to describe overseas Japanese patients' preferences for participation in decisions about cancer; to delineate patients' beliefs about how physicians should make cancer disclosure decisions; and to assess patients' attitudes about a advance directive for cancer disclosure. METHODS: This ethnography utilized data from participant observations, 30 interviews, and lay materials. Using the analytic technique of immersion and crystallization the data were organized around major themes and subthemes. RESULTS: The mean age of the 30 participants was 38 years and most (n = 20) were female. While most patients expressed preferences to be told the results of cancer testing, the number who did not want to be told increased with more advanced cancer stage. Many participants believed decisions about disclosure should be influenced by a patient's personality, age, or gender, although the relative importance of these factors was variable. Virtually all believed circumstances existed when fully competent patients should not be told the cancer diagnosis. Most participants were supportive of using an advance directive for cancer disclosure. DISCUSSION: These participants' beliefs about many aspects of the management of cancer test results differ from recommended approaches to conveying cancer test results and discussing the cancer diagnosis in the United States. Most encourage the use of an advance directive for cancer disclosure as mechanism for physicians to elicit patients' unique preferences for participation in decision making about cancer.