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. 2018 Nov 14;13(11):e0206422.
doi: 10.1371/journal.pone.0206422. eCollection 2018.

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

Nathan Davies  1   2 , Jill Manthorpe  3 , Elizabeth L Sampson  2   4 , Kethakie Lamahewa  1 , Jane Wilcock  1 , Rammya Mathew  1 , Steve Iliffe  1
Affiliations

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

Nathan Davies et al. PLoS One. .

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.

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Conflict of interest statement

The authors have declared that no competing interests exist.

Figures

Fig 1
Fig 1. Overview of procedure (previously published as part of methodology paper for this study [28].
Fig 2
Fig 2. Eating and swallowing difficulties.
*comfort feeding may carry associated risks of aspiration **Closely observe all intake particularly if changes to swallow function are suspected *** Consider appropriateness on individual basis SALT = speech and language therapist. Reprinted from Davies and Iliffe under a CC BY license, with permission from Davies and Iliffe, original copyright 2016.
Fig 3
Fig 3. Agitation or restlessness.
Reprinted from Davies and Iliffe under a CC BY license, with permission from Davies and Iliffe, original copyright 2016.
Fig 4
Fig 4. Reviewing treatment and interventions at the end of life.
Reprinted from Davies and Iliffe under a CC BY license, with permission from Davies and Iliffe, original copyright 2016.
Fig 5
Fig 5. Providing routine care at the end of life.
Reprinted from Davies and Iliffe under a CC BY license, with permission from Davies and Iliffe, original copyright 2016.
See this image and copyright information in PMC

References

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    1. Banerjee S. Living Well with Dementia: A National Dementia Strategy. London: Department of Health; 2009.
    1. Alzheimer’s Disease International. Bibliography of References to National Plans. London: 2016.
    1. Davies N, Iliffe S. End of life care—why those with dementia have different needs. BMJ. 2016;353(i2171). - PubMed
    1. Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN, Prigerson HG, et al. The Clinical Course of Advanced Dementia. The New England Journal of Medicine. 2009;361(16):1529–38. 10.1056/NEJMoa0902234 - DOI - PMC - PubMed

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