Séminaire parallèle 1
Advance care planning by proxy for nursing home residents without decision making capacity

L. Jones1, R. Rutz Voumard1, F. Rhyner1, E. Rubli Truchard1, R. J. Jox1 (1Lausanne)


Residential aged care facility residents are admitted to RACFs later and later in life, with increasingly complex care needs.  Many already have limited medical decision-making capacity at admission. Advance Care Planning (ACP) shows promising signs of promoting care in accordance with patient wishes, through eliciting treatment wishes and preferences but no ACP by proxy interventions, specifically designed for use with health care proxies of RACF residents without medical decision-making capacity, exist.  


To explore the needs of health care proxies, RACF health professionals and physicians for ACP by proxy on behalf of RACF residents without decision-making capacity and develop a model of ACP by proxy for this context. 


Three focus groups with 13 RACF physicians, three focus groups with 23 RACF health professionals and 16 semi-structured interviews with 19 health care proxies were conducted. Discussions were transcribed verbatim and analyzed thematically using Braun and Clarke’s (2006) framework. These results, combined with a review of the existing literature, were used to develop an ACP by proxy model.


Health care proxies wished to be included in planning and decision making systematically, with consistent communication about RACF residents' health and treatments. Health professionals expressed the need for tools to identify health care proxies, discussion guides for ACP by proxy discussions, training for ‘delicate’ discussions, and clear documentation. Physicians and RACF professionals highlighted the importance of physician presence for discussions of emergency orders, yet time restrictions limit the feasibility. Physicians also highlighted the need for standardized documentation that is quickly understandable in case of emergency or hospital transfer and that clearly stipulates treatment limits.


Based on these data we have developed a model of ACP by proxy for the RACF context. Acceptability and feasibility testing are currently underway. Development and important factors in the implementation of this model will be discussed.