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BMC Palliative Care
Published in: BMC Palliative Care 1/2016

Open Access 01-12-2016 | Research article

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

Authors: Geena Saini, Elizabeth L. Sampson, Sarah Davis, Nuriye Kupeli, Jane Harrington, Gerard Leavey, Irwin Nazareth, Louise Jones, Kirsten J. Moore

Published in: BMC Palliative Care | Issue 1/2016

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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 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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Metadata
Title
An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes
Authors
Geena Saini
Elizabeth L. Sampson
Sarah Davis
Nuriye Kupeli
Jane Harrington
Gerard Leavey
Irwin Nazareth
Louise Jones
Kirsten J. Moore
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2016
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-016-0127-2

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