End‐of‐life care in the pediatric intensive care unit: Survey in Japan

Background End‐of‐life (EOL) care is an important topic in critical care medicine, but EOL discussions with families can be difficult and stressful for intensivists. The aim of this study was to clarify the current practices and barriers facing pediatric intensive care unit (PICU) EOL care and to identify the requisites for excellent PICU EOL care in Japan. Methods A survey was conducted in 29 facilities across Japan in 2016. The questionnaire consisted of 19 multiple‐choice questions and one open‐ended question. Results Twenty‐seven facilities responded to the survey. Only 19% had educational programs on EOL care for fellows or residents. Although 21 hospitals (78%) had a multidisciplinary palliative care team, only eight of these teams were involved in EOL care in PICUs. Mental health care for health‐care providers provided by a psychiatrist was rare (4%). The free comments were categorized as individual, team, environment, legal/ethics, or culture. Commonly raised individual issues included “lack of experience and knowledge about EOL care”, “fear of making the decision to end care”, and “reluctance to be involved in EOL care because of its complex process”. Team issues included “insufficient frequency of conferences” and “non‐multidisciplinary approach”. Legal and ethics issues were “lack of legal support” and “fear of lawsuits”. Conclusions This study is the first to investigate the current conditions and barriers in PICU EOL care in Japan. Most of the facilities involved were not satisfied with current practices. A need was identified for relevant educational programs, as well as the importance of multidisciplinary and legal support.