The importance of living well now and relationships: A qualitative study of the barriers and enablers to engaging frail elders with advance care planning

Abstract

Background: The population of frail elders is growing, and due to their vulnerability to sudden deterioration, advance care planning is particularly important. However, advance care planning is uncommon for multiple reasons, some of which are linked to the perceptions of frail elders and their families. Aim: To explore the barriers and enablers to advance care planning engagement with frail elders. Design: Qualitative in-depth interviews with thematic analysis. Setting/participants: Purposive sample of 10 frail elders and 8 nominated family members using a community-based older persons’ service run by a large urban UK hospice. Frail elders had capacity, were ⩾65 (median 85, range 71–95), scored 6 or 7 (median 6.5) on the Clinical Frailty Scale, and 70% were female. Results: Key barriers were: Advance care planning is unclear, in terms of meaning and the language used; Lack of relevance, with frail elders preferring to focus on living well now; and the Importance of family, relationships and home, and the influence of relationship on end of life decision-making. Engagement strategies included preparing the frail elder for advance care planning conversations and using a gentle, honest, individualised approach. Conclusions: Essential enablers for frail elders are understanding what advance care planning is and why it may be relevant to them. For professionals, enablers include recognising the importance of living well now and relational decision-making. To further support advance care planning, recommendations include early engagement and re-conceptualising advance care planning as an ongoing process which encompasses current and future care. Further research is needed in different cultures and care contexts.

Care and support networks of community-dwelling frail individuals in North West London: a comparison of patient and healthcare workers’ perceptions

“…The prominent representation of Family/Friends in this study echoes the literature, where the value of these people has been noted [ 48 – 50 ], particularly on frailty progression [ 51 , 52 ]. However, this finding may additionally reflect upon high numbers of informal carers caring for family [ 53 ].…”

Effect of a Video-Supported Nurse-Led Advance Care Planning for Older Adults with Frailty: A Randomized Controlled Trial

“…The two RCTs with significant results targeting subjects with limited life expectancy (elderly in nursing homes and patients with advanced serious illness and their proxies) and the two with non-significant results included advanced cancer patients and patients visiting primary care clinics. In this study, we included older adults with frailty who were healthy and had long life expectancies; thus, they would be less likely to see the clinical relevance or urgency of ACP conversations [33,34]. In our qualitative analysis of ACP conversations who did not complete AD after the ACP intervention, we also found that the older adults generally accepted that getting old and becoming frailer is a natural process instead of feeling anxious about death [35].…”

Preferences for end‐of‐life care: A cross‐sectional survey of Chinese frail nursing home residents

“…Older people with frailty are at a higher risk of deterioration and adverse outcomes, thus increasing the relevance of ACP (Clegg et al, 2013; Covinsky et al, 2003). While some studies suggested that the majority of older patients would appreciate discussing EoLC, a recent study underscored that frail older adults often did not see the relevance of ACP, because they did not believe that their illness was that severe or they preferred to focus on living in the present as opposed to future planning (Combes et al, 2021; Sharp et al, 2013). Therefore, it is important to reconceptualize ACP to include current and future care to improve its relevance to frail residents (Combes et al, 2021).…”