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.
