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Guiding practitioners through end of life care for people with dementia: The use of heuristics

Davies, N; Manthorpe, J; Sampson, E; Lamahewa, K; Wilcock, J; Mathew, R; Iliffe, SR; (2018) Guiding practitioners through end of life care for people with dementia: The use of heuristics. PLoS ONE , 13 (11) , Article e0206422. 10.1371/journal.pone.0206422. Green open access

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Abstract

Background: End of life care (EOLC) for people with dementia can present a multitude of challenges and difficult decisions for practitioners. These challenges may include assessment and management of difficulties with eating and swallowing, responding to agitation, treating pain, and managing recurrent infections. Practitioners sometimes lack both confidence in making end of life decisions and guidance. This study developed an alternative to lengthy guidelines, in the form of heuristics which were tested in clinical settings. The aim of this study was to test the usability and acceptability of a set of heuristics which could be used by practitioners providing EOLC for people with dementia in a variety of clinical and care settings. Methods: A three phase co-design process was adopted: 1) Synthesis of evidence and outputs from interviews and focus groups with family carers and practitioners, by a co-design group, to develop heuristics; 2) Testing of the heuristics in five clinical or care settings for six months; 3) Evaluation of the heuristics at three and six months using qualitative individual and group interviews. Results: Four heuristics were developed covering: eating and swallowing difficulties, agitation and restlessness, reviewing treatment and interventions at the end of life, and providing routine care. The five sites reported that the heuristics were simple and easy to use, comprehensive, and made implicit, tacit knowledge explicit. Four themes emerged from the qualitative evaluation: authority and permission; synthesis of best practice; providing a structure and breaking down complexity; and reassurance and instilling confidence. Conclusion: Use of heuristics is a novel approach to end of life decision making in dementia which can be useful to both experienced and junior members of staff making decisions. Heuristics are a practical tool which could overcome a lack of care pathways and direct guidance in end of life care for people with dementia.

Type: Article
Title: Guiding practitioners through end of life care for people with dementia: The use of heuristics
Open access status: An open access version is available from UCL Discovery
DOI: 10.1371/journal.pone.0206422
Publisher version: https://doi.org/10.1371/journal.pone.0206422
Language: English
Additional information: Copyright: © 2018 Davies et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health
URI: https://discovery.ucl.ac.uk/id/eprint/10061588
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