A facility staff survey on advance care planning

Abstract

The objective of this study was to obtain opinions of facility staff regarding advance care planning (ACP) before introducing this system. A questionnaire survey on ACP was conducted in the facility staff (e.g. physicians, nurses, social workers, and rehabilitation workers) who had been directly involved in the care for children (patients) with severe motor and intellectual disabilities (SMID). It was revealed that ACP had been recognized only by 7% of the staff. However, once they were told what it was about, 22% responded that they had already been practicing ACP. According to the survey, the most frequently reported time to start talking about ACP was when patients were approaching death, and the topics of ACP that they discussed were more on symptoms and treatments rather than on their concerns, preferences or values. As for issues on practicing ACP, it appeared necessary to consider how to share the details of discussions or how to provide an adequate consultation system for patients and their families as well as how to educate/train the facility staff. It is difficult to obtain opinions from children (patients) with SMID. Hence, it is important to collect objective information in order to predict their opinions as accurate as possible. It is a crucial role for a facility which is responsible for providing end-of-life treatments/care for children (patients) with SMID to work on recording/sharing information as well as on early start of ACP between families and medical care teams.