Background Advance care planning (ACP) as commonly understood requires decision-making capacity (DMC). When people lose DMC proxies are called upon to make surrogate decisions. ACP by proxy is an extension of classic ACP that specifically promotes patient autonomy in this context. Little research focuses on how ACP by proxy is best conducted, and most ACP research in nursing homes has excluded residents without DMC. Our project aims to identify current proxy planning practices, difficulties and needs, and to explore how ACP by proxy can be implemented in nursing homes in Switzerland.
Methods We present the results of five focus groups; one with physicians of nursing home residents and four with health professionals involved in planning processes in nursing homes in French-speaking Switzerland. Focus groups were audio-recorded and transcribed verbatim. Themes important to the concepts of ‘current practice’, ‘difficulties’ and ‘future needs’ were identified through thematic analysis.
Results Current practices: communication between health professionals, residents, and family, use of advance directives for documentation and as conversation starters, and a variety of systems for recording information. Difficulties: ‘timing’ of communication with families, interpersonal conflicts, roles of family members, hesitancy talking about end of life care and transfer of information. Future needs: documentation, conversation guides and decision aids specifically adapted for ACP by proxy.
Conclusions The identification of specific needs for ACP by proxy can inform the adaptation of existent tools to facilitate ACP by proxy in nursing homes and therefore promote care in accordance with the presumed wishes of residents without DMC.
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