Japanese Citizens' Perspectives on Advance Care Planning Discussions in Clinical Settings: A Focus Group Interview Study

Context: Advance care planning (ACP) is not as common in Japan as in Western countries, despite the country’s aging population. In Asian culture, it has been assumed that elderly patients do not prefer explicit discussion and leave their decisions to the family. The city of Hamamatsu has developed a handbook to promote ACP among patients, families, and clinicians for such occasions when the disease is incurable and death is imminent within a year. Citizen input was necessary in the development of the handbook.

Objective: To explore citizens' perspectives on discussing ACP with clinicians for end-of-life care and to gather feedback on the prototype ACP handbook.

Study Design and Analysis: Qualitative study using focus group interviews. Thematic analysis was conducted.

Setting: Interviews were conducted in Hamamatsu City, Japan.

Population Studied: Community residents, recruited through clinical staff and a cancer peer group.

Intervention: We presented the prototype of the ACP Handbook for End-of-Life Care, showed a video of a demonstration conversation between a patient and clinicians using the handbook, and conducted focus group interviews with the participants about their impressions of discussing ACP in clinical settings and questions or requests about the content and the use of the handbook.

Outcome Measures: Themes derived from the interview data.

Results: Four focus group interviews were conducted with a total of 15 participants (11 women and 4 men; ages 51–77, median 68 years). Four had a history of cancer; one each had a stroke and diabetes; ten were family caregivers. Participants responded positively to the ACP handbook, considering it an essential tool; they should start discussing ACP while they are still well; they hoped for its promotion to the public. Many were concerned about how much clinicians would engage in ACP due to their limited time and communication skills, referring to their own experiences as patients or family members. Most male participants expressed concern that the handbook could be an "end-of-life" statement. They felt that finding the right time to discuss ACP would be sensitive. Older people living alone were concerned about who to trust with their end-of-life care.

Conclusions: Contrary to assumptions, citizens' attitudes towards ACP were positive. However, they were uncertain about clinicians’ willingness and engagement in ACP discussions. Barriers to ACP discussion could be reduced by promoting the use of the handbook.