Journal
BMC PALLIATIVE CARE
Volume 15, Issue -, Pages -Publisher
BMC
DOI: 10.1186/s12904-016-0127-2
Keywords
Advanced dementia; End-of-life discussions; Nursing homes; Family carers; Ethnography
Funding
- Marie Curie Cancer Care [MCCC-FPR-11-U]
- Cancer Research UK
- Marie Curie [MCCC-FPR-11-U] Funding Source: researchfish
- National Institute for Health Research [NF-SI-0515-10041] Funding Source: researchfish
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Background: Most people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice. Methods: An ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals. Results: Four major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end-of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions. Conclusions: The Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.
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