Barriers to Promoting Advance Care Planning for Residents Living in a Sanatorium for Hansen’s Disease: A Qualitative Study of Residents and Staff in Japan

In Japan, most residents with Hansen’s disease (leprosy) live in dedicated sanatoria because of an established quarantine policy, even after being cured of the primary disease. They suffer from secondary diseases and are advancing in age, and advance care planning (ACP) is increasingly crucial for them to live their lives with dignity in a sanatorium. In this study, we have three aims: (1) to understand how to promote communication about their wishes for medical treatment, care, and recuperation; (2) to identify required assistance; and (3) to explore how to promote ACP in a sanatorium. This study is a qualitative research conducted through semi-structured interviews. The study included 57 ex-Hansen’s disease patients and 66 staff (10 doctors, 27 nurses, 23 care workers, and 6 social workers) from 10 facilities. Ex-Hansen’s disease patients were expected to consider ACP, but this was in the context of uncertainty about whether a sanatorium would close and whether there would be doctors to manage their needs. They reported being confused when staff rushed to confirm their advance directives, feeling that they were not provided with enough information before being approached. Barriers to promoting ACP were found to be insufficient of team-based care and information sharing, ex-Hansen’s disease patients’ weak interest in their end of life, and their conservative thoughts. We believe that ACP can be achieved by listening to the wishes of recovered patients through regular home care visits by nurses and everyday support by care workers. Furthermore, multidisciplinary coordination is urgently needed for promoting ACP.