Proxy, nurse, and physician needs regarding advance care planning by proxy for aged care residents lacking decision making capacity: an exploratory study

Worldwide, populations are ageing. Together with improved home care and limited places in residential aged care facilities (RACF), this leads to people being admitted to RACF at more advanced ages and in increasingly fragile states of health, often with cognitive impairment. Advance directive completion rates are low, so many people are admitted to RACFs without having formally stated their wishes for care. Guidelines for advance care planning (ACP) in nursing homes exist, however they focus primarily on residents who maintain decision-making capacity. Programs are needed for people lacking decision-making capacity. We aimed to investigate the essential elements needed for ACP by proxy programs (ACPbp) for RACF contexts. We conducted a qualitative exploratory study into health care proxy, RACF nurse and physician needs for ACPbp programs. We conducted semi-structured interviews with 18 health care proxies of 16 RACF residents lacking decision-making capacity, 3 focus groups with 23 RACF nurses and 3 focus groups with 13 physicians working in 9 RACFs. Health care proxies expressed the need for structured, accompanied communication about residents’ health state and potential future situations requiring decision-making. Nurses echoed this need, adding that they need specific training along with standardised processes and discussion guides for conducting ACPbp discussions, and standardised documentation. Physicians also evoked the need for standardised processes and documentation to ensure efficient transfers between facilities and comprehensive documents in case of medical emergency. Such documents should be as short as possible, but also provide space to describe the resident’s values, life history and presumed will. Specifically trained personnel and time allocated specifically to ACPbp are key for implementation. This study underscores the need for ACPbp in RACFs, provides guidelines for such programs and identifies the specific aspects necessary for the development of ACPbp programs in this context.