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Palliative medicine · Jun 2021
The importance of living well now and relationships: A qualitative study of the barriers and enablers to engaging frail elders with advance care planning.
- Sarah Combes, Karen Gillett, Christine Norton, and Caroline Jane Nicholson.
- Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London, London, UK.
- Palliat Med. 2021 Jun 1; 35 (6): 1137-1147.
BackgroundThe 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.AimTo explore the barriers and enablers to advance care planning engagement with frail elders.DesignQualitative in-depth interviews with thematic analysis.Setting/ParticipantsPurposive 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.ResultsKey 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.ConclusionsEssential 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.
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