Abstract
BackgroundEnd 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.MethodsA 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.ResultsFour 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.ConclusionUse 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.
Highlights
Dementia is the most common cause of death in England and Wales [1]
The aim of this study was to test the usability and acceptability of a set of heuristics which could be used by practitioners providing End of life care (EOLC) for people with dementia in a variety of clinical and care settings
This study has developed a finalised practical toolkit of heuristics which can be used across settings by practitioners providing end of life care for people with dementia
Summary
Dementia is the most common cause of death in England and Wales [1]. There is no known disease modifying treatment for the syndrome. Towards the end of life there may be many complications which can be distressing and create dilemmas for practitioners and family members about what to do [4] Problems such as difficulties with swallowing and difficulties with eating, drinking and taking oral medication; agitation; and a diminished immune response leading to greater susceptibility to infections, all create different and difficult/complex options which need to be decided between. 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. 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
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