The law has a clear role to play in supporting patients and their substitute decision-makers (SDMs) to be involved in end-of-life (EOL) decision-making. Although existing literature suggests that knowledge of EOL law is variable among health professionals, there is little information about the extent and sources of such knowledge within the general community. A telephone survey of a representative sample of adults in three Australian States used six case scenarios to examine the extent to which adults know their legal duties, rights and powers as patients or SDMs; the sources from which people derive relevant legal knowledge; experiences of EOL decision-making; and individual characteristics associated with levels of knowledge. The results show considerable variation in levels of legal knowledge dependent primarily of the area of decision-making presented, some sizeable gaps in people's knowledge of EOL law, and varied awareness of how to access appropriate information on this subject. This study points to the need to increase community legal literacy around EOL decision-making, enhance awareness of the role of law in these circumstances and promote the availability of reliable and accessible information on the law at the time when it is needed.
BACKGROUND: The community prevalence of advance care directives (ACDs) is low despite known benefits of advance care planning for patients, families and health professionals.
AIM: To determine the community prevalence of instructional and appointing ACDs in New South Wales, Victoria and Queensland and factors associated with completion of these documents.
METHODS: A telephone survey of adults living in New South Wales, Victoria and Queensland (n=1175) about completion of instructional ACDs (making their own decisions about future health care) and appointing ACDs (appointing another to decide). Quota sampling occurred based on population size by state, gender and age, with oversampling in smaller jurisdictions (Victoria and Queensland).
RESULTS: Overall response rate was 33%. Six per cent of respondents reported completing an instructional ACD while 12% reported completing an appointing ACD. Female gender, higher educational level, personal experience of a major health scare and being widowed were significant predictors of completing an instructional ACD. Older age, higher educational level and being widowed were significant predictors of completing an appointing ACD.
CONCLUSIONS: Despite long-standing efforts to increase advance care planning, community prevalence of ACDs remains low, particularly for instructional ACDs. This study found some different predictors for instructional ACDs compared with appointing ACDs, and also a potential role for experiential factors in triggering uptake. These findings suggest supplementing general community awareness campaigns with more nuanced and targeted efforts to improve ACD completion.