An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes. Issue 1 (December 2016)

• Record Type: Journal Article
• Authors: Saini, Geena; Sampson, Elizabeth; Davis, Sarah; Kupeli, Nuriye; Harrington, Jane; Leavey, Gerard; Nazareth, Irwin; Jones, Louise; Moore, Kirsten
• Is Part Of: BMC palliative care. Volume 15:Issue 1(2016)
• Page Start: 1
• Page End: 12
• Publication Date: 2016-12
• Subjects: Advanced dementia -- End-of-life discussions -- Nursing homes -- Family carers -- Ethnography; Palliative treatment -- Periodicals; 616.02905
• DOI: 10.1186/s12904-016-0127-2
• Languages: English
• ISSNs: 1472-684X

Abstract

Abstract 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 theCompassion Intervention was delivered. TheCompassion 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.