Managing uncertainty in care for people with dementia at the end of life

This study developed a toolkit of heuristics to aid practitioners making difficult decisions when caring for someone with dementia at the end of life|BMJ Supportive & Palliative Care.
Image source: Charles Hamm – Wikipedia // CC BY 3.0

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: Facial-weakness, Arm-weakness, Slurred-speech, Time to call 999.

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.

Full reference: Davies, N. et al. (2017) 14 Managing uncertainty in care for people with dementia at the end of life: the use of heuristics. BMJ Supportive & Palliative Care. Vol. 07 (Issue 03) p. A352.

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