End-of-life health literacy, knowledge and behaviours towards advance care planning among older adults: cross-sectional evidence from Switzerland

Meier, Clément; Vilpert, Sarah; Wieczorek, Maud; Borrat-Besson, Carmen; Jox, Ralf J; Maurer, Jürgen

doi:10.1136/bmjph-2023-000600

Cited by 2 publications

References 59 publications

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

Jones,

Voumard,

Rhyner

et al. 2024

Preprint

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Background 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 (DMC). Models are needed for people lacking DMC. We aimed to investigate the essential elements needed for ACP by proxy models (ACPbp) for RACF contexts. Methods We conducted a qualitative exploratory study into health care proxy, RACF nurse and physician needs for ACPbp models. We conducted semi-structured interviews with 19 health care proxies of 16 RACF residents lacking DMC, 3 focus groups with 23 RACF nurses and 3 focus groups with 13 physicians working in 9 RACFs. Results 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 mentioned 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. Conclusions This study underscores the need for ACPbp in RACFs, gives broad guidelines and outlines the ethical frameworks for such a concept, by identifying the specific aspects necessary for the development of ACPbp models in this context. Trial Registration Not applicable

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

Jones,

Voumard,

Rhyner

et al. 2024

Preprint

View full text Add to dashboard Cite

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Compassionate engagement of communities in support of palliative and end-of-life care: challenges in post-pandemic era

Vitorino,

Duarte,

Ali

et al. 2024

Front. Med.

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Over the years, humanity has faced various global crises of different kinds that have caused great suffering in the community, such as wars, slavery, torture or the Holocaust, but also climate change, economic crises, or sanitary disasters. The recent pandemic posed a barrier to palliative and End-of-Life (EoL) care, as the need for physical distance made it difficult to retain essential human interactions while minimizing the risk of viral transmission. During the COVID-19 pandemic, the robustness of supportive networks (i.e., family, friends, neighbors, and community members) determined whether someone experienced a calm death at home or an unnecessary hospital admission, labeled as an ‘emergency’. In this vein, active establishment and strengthening of such networks are the foundation of compassionate community efforts. Firstly, providing both physical and emotional support to the entire network of caregivers enhances their ability to care for others and improves the overall experience of death, including the process of dying and the ensuing bereavement period. Furthermore, individuals can enhance their own physical and mental health by practicing compassion. The ability of networks to withstand and recover from physical and emotional challenges, while maintaining strong and supportive relationships among its members, depends on the health and overall well-being of those members. Therefore, we argue that active community participation and death education can strengthen a community’s capacity to assist people facing death, dying, and bereavement.

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End-of-life health literacy, knowledge and behaviours towards advance care planning among older adults: cross-sectional evidence from Switzerland

Cited by 2 publications

References 59 publications

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

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

Compassionate engagement of communities in support of palliative and end-of-life care: challenges in post-pandemic era

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