An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes

BMC Palliative Care

Research Article

Gerard Leavey¹  Geena Saini²  Irwin Nazareth³  Jane Harrington⁴  Kirsten J. Moore⁴  Elizabeth L. Sampson⁴  Nuriye Kupeli⁴  Louise Jones⁴  Sarah Davis⁴ 

[1] Bamford Centre for Mental Health & Wellbeing, University of Ulster, Magee Campus, Northland Road, BT48 7JL, Derry Londonderry, UK;Centre for Mental Health, Maya House, 134-138 Borough High Street, SE1 1LB, London, UK;Department of Primary Care and Population Health, UCL Royal Free Site, Rowland Hill Street, NW3, London, UK;Marie Curie Palliative Care Research Department (MCPCRD), Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, W1T 7NF, London, UK;

关键词: Advanced dementia;    End-of-life discussions;    Nursing homes;    Family carers;    Ethnography;   

DOI  :  10.1186/s12904-016-0127-2

 received in 2016-03-24, accepted in 2016-06-28,  发布年份 2016

来源: Springer

【 摘 要 】

BackgroundMost 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.MethodsAn 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.ResultsFour 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.ConclusionsThe 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.

【 授权许可】

CC BY   
© The Author(s). 2016