Protocol for a national prevalence study of advance care planning documentation and self-reported uptake in Australia

Abstract

IntroductionAdvance care planning (ACP) is a process between a person, their family/carer(s) and healthcare providers that supports adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding future medical care. The Australian government funds a number of national initiatives aimed at increasing ACP uptake; however, there is currently no standardised Australian data on formal ACP documentation or self-reported uptake. This makes it difficult to evaluate the impact of ACP initiatives. This study aims to determine the Australian national prevalence of ACP and completion of Advance Care Directives (ACDs) in hospitals, aged care facilities and general practices. It will also explore people’s self-reported use of ACP and views about the process.Methods and analysisResearchers will conduct a national multicentre cross-sectional prevalence study, consisting of a record audit and surveys of people aged 65 years or more in three sectors. From 49 participating Australian organisations, 50 records will be audited (total of 2450 records). People whose records were audited, who speak English and have a decision-making capacity will also be invited to complete a survey. The primary outcome measure will be the number of people who have formal or informal ACP documentation that can be located in records within 15 min. Other outcomes will include demographics, measure of illness and functional capacity, details of ACP documentation (including type of document), location of documentation in the person’s records and whether current clinical care plans are consistent with ACP documentation. People will be surveyed, to measure self-reported interest, uptake and use of ACP/ACDs, and self-reported quality of life.Ethics and disseminationThis protocol has been approved by the Austin Health Human Research Ethics Committee (reference HREC/17/Austin/83). Results will be submitted to international peer-reviewed journals and presented at international conferences.Trial registration numberACTRN12617000743369