Abstract
BackgroundThe end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia.MethodsAn iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with dementia. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice.ResultsFour broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing “routine care” at the end of life. Each topic became a heuristic consisting of rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering ‘comfort feeding’ only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer’s wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting the delivery of care, in order to promote comfort and dignity at the end of life.ConclusionsThe heuristics are easy to use and remember, offering a novel approach to decision making for dementia end-of-life care. They have the potential to be used alongside existing end-of-life care recommendations, adding more readily available practical assistance. This is the first study to synthesise experience and existing evidence into easy-to-use heuristics for dementia end-of-life care.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0146-z) contains supplementary material, which is available to authorized users.
Highlights
The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties
Design Using information from three sources and applying an iterative co-design approach, triangulation of data was carried out using a literature review, qualitative interviews and focus groups with family carers (‘experts by experience’), and focus groups with health and care professionals
Other topics, including person-centred care and communication between professionals, were deemed by the co-design group to be less appropriately addressed by heuristics and more ‘generic’ to good dementia care rather than specific to end of life care
Summary
The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-ofthumb) to aid practitioners making end-of-life care decisions for people with dementia. As people with dementia approach the end of life they develop symptoms which can be distressing and create dilemmas for practitioners and family members [6]. These may include difficulties with swallowing and problems with eating, drinking and taking oral medication, agitation, a weakened immune system leading to susceptibility to infections, skin breakdown, and shortness of breath [7]. This, in turn, makes the processes of recognition, treatment and decisionmaking more challenging
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