Realist review to inform development of the Electronic Advance Care Plan for the Personally Controlled Electronic Health Record in Australia

Introduction: Australia has invested heavily to introduce an opt-in personally controlled electronic healthcare record (PCEHR), which incorporates an element of advance care planning (ACP). A further investment of $10 million AUD has been made to increase capability to a fully integrated electronic ACP (eACP). Australia has an aging population, the majority of whom will live, be cared for, and die in the community. ACP in the community setting can support older people to navigate their illness trajectories and health decision-making. Sharing this information with care providers across different healthcare settings is crucial.

Materials and Methods: The eACPs was conceptualized as a complex social intervention. We conducted a realist review of the literature to explore evidenced-based models of eACP for community-dwelling older people, with chronic, life-limiting illness. A scoping search identified gray literature; a systematic search for empirical evidence was conducted of eight databases, including PubMed and Google Scholar.

Results: Seventeen articles were included, along with 71 other documents. Realist synthesis based on data collected using original abstraction forms was used to develop a model to explain what worked for whom and in what circumstances. Electronic physician reminders and information to patients increased ACP completions. However, there were no precedents for transferring ACPs into a national PCEHR.

Conclusions: We developed a model informed by six core themes from the literature: information sharing, process, initiating conversations, dignity of life (individualized approach), education (individual and community), and collaborative practice (engagement). End-of-life care that is consistent with older people's values and preferences requires robust care processes and efficient information sharing across the healthcare continuum.