14 Managing uncertainty in care for people with dementia at the end of life: the use of heuristics. Issue 3 (1st September 2017)

• Record Type: Journal Article
• Authors: Davies, Nathan; Lamahewa, Kethakie; Mathew, Rammya; Wilcock, Jane; Manthorpe, Jill; Sampson, Elizabeth L; Iliffe, Steve
• Is Part Of: BMJ supportive & palliative care. Volume 7:Issue 3(2017)
• Page Start: A352
• Page End: A352
• Publication Date: 2017-09-01
• Subjects: Palliative treatment -- Periodicals; Terminal care -- Periodicals; 616.029
• DOI: 10.1136/bmjspcare-2017-001407.14
• Languages: English
• ISSNs: 2045-435X

Abstract

Abstract : Introduction: The end of life for someone with dementia can present several challenges for practitioners. Challenges may be eased with the use of heuristics (rules-of-thumb). For example, FAST is used in stroke: F acial-weakness, A rm-weakness, S lurred-speech, T ime to call 999. Our study developed a toolkit of heuristics to aid practitioners making difficult decisions when caring for someone with dementia at the end of life. Methods: A co-design approach with three phases: 1. Focus groups and semi-structured interviews with family carers and practitioners, to identify key decisions and how these should be made. Results were presented to a co-design group consisting of health and care practitioners, and family carers tasked with developing a toolkit of heuristics, through workshops. 2. Testing the heuristics in practice for six-months in five clinical and care settings. 3. Evaluation of heuristics through interviews and questionnaires at three and six-months. Results: Four sets of heuristics were developed, covering; eating/swallowing difficulties, agitation/restlessness, reviewing treatment, and routine care. The heuristics are arranged as flowcharts. Eating/swallowing difficulties have two rules; ensuring eating/swallowing difficulties do not come as a surprise and reflection about 'comfort-feeding' only. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and caregivers' health/wellbeing. Reviewing treatment/interventions prompts practitioners to consider the benefits to quality-of-life and comfort. Finally, routine care, such as bathing, prompts practitioners to ensure care interventions improve or do not harm quality-of-life. Conclusions: Practitioners liked the simplicity of the heuristics, making their implicit knowledge explicit, enhancing their confidence in making decisions at the end of life.