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. 2024;70(2):173-183.
doi: 10.1159/000535455. Epub 2023 Nov 24.

"What Is the Most Important to Them?" Swiss Health Care Proxies, Nurses, and Physicians Discuss Planning Practices for Aged Care Residents Who No Longer Have Medical Decision-Making Capacity

Laura Jones  1 , Florent Rhyner  2 , Rachel Rutz Voumard  3   4 , Fiorella Figari Aguilar  5 , Eve Rubli Truchard  1 , Ralf J Jox  1
Affiliations

"What Is the Most Important to Them?" Swiss Health Care Proxies, Nurses, and Physicians Discuss Planning Practices for Aged Care Residents Who No Longer Have Medical Decision-Making Capacity

Laura Jones et al. Gerontology. 2024.

Abstract

Introduction: Multiple morbidities, including neurodegenerative diseases such as dementia, which result in diminished decision-making capacity (DMC), make care and care planning complicated for residential aged care facility (RACF) residents. While advance care planning has been highlighted as essential for ensuring that this population receives care that is coherent with their wishes, there are few models specifically designed for this population. This study aimed to explore the current practices for care planning and decision-making for Swiss RACF residents who no longer have medical DMC.

Methods: Semi-structured focus groups were conducted with 23 nurses in three RACFs and with 13 physicians working in 9 RACFs. Semi-structured interviews were conducted with 18 health care proxies of 16 residents without DMC. Thematic analysis was conducted to identify the most salient themes across the dataset.

Results: Analyses identified many collaborative processes between nurses, physicians, and health care proxies including family meetings, reconstructing residents' presumed will, making anticipatory decisions, and documenting these decisions. These processes were, however, highly variable and differed between institutions and between residents within each facility, with a lack of standardization. This variability was highlighted to be problematic for information transmission within facilities and in case of hospital or facility transfer.

Conclusions: These results highlight the importance of standardized yet flexible processes of care planning for people who no longer have DMC and provide insights for the development of such models specifically designed to address this problem.

Keywords: Advance care planning; Decision-making capacity; Residential aged care facilities.

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Conflict of interest statement

The authors have no conflicts of interest to declare.

Figures

Fig. 1.
Fig. 1.
Examples of questions asked in interviews with health care proxies and in focus groups with RACF health professionals and physicians.
See this image and copyright information in PMC

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