Can heuristics (rules of thumb) help aid practitioners make difficult decisions at the end-of-life for people with dementia?

Problem

End-of-life care guidance for people with dementia is lacking and this has been made more problematic in England with the removal of the Liverpool Care Pathway, which provided some structure. This guidance gap may be eased with the development of heuristics (rules of thumb). Heuristics are schematic patterns that can be applied in complex situations and function as prompts to thinking and action, they are brief and easy to remember and lead to action. For example, FAST is used in stroke. It stands for: Facial weakness, Arm weakness, Slurred speech, Time to call 999.This study aimed to develop a toolkit of heuristics (rules of thumb) to aid practitioners making difficult decisions when caring for people with dementia at the end-of-life.

Approach

A mixed method study using a co-design approach, with three phases:1) Two focus groups with bereaved family carers, four with health and social care practitioners from hospital and community services, and three semi-structured interviews with family members currently caring. A multidisciplinary development team of health and social care practitioners synthesised the findings to devise a toolkit of heuristics. 2) Test the use of heuristics in practice in five sites for six months; one general practice, one community nursing team, one hospital ward, and two community palliative care teams.3) Evaluation and refinement of the heuristics through group interviews, online questionnaires and semi-structured interviews with sites in phase two at three and six months.

Findings

Four broad areas were identified as difficult decisions at the end-of-life; difficulties with swallowing and eating, agitation and restlessness, ending life-sustaining treatment, and providing routine care. Each topic consists of a series of rules which are arranged into a diagrammatic flowchart. The first heuristic eating and swallowing considers if the incident is an emergency and whether to call for help (emergency services), additionally reflecting upon if the difficulties are due to the progression of the disease and therefore the option of comfort feeding or time trialled artificial feeding. Agitation and restlessness encourages a holistic approach considering the environment/social causes, physical causes, and the health and wellbeing of the carer. Importantly this heuristic emphasises the need to not always attribute agitation to dementia. Ending life sustaining treatment guides practitioners through a process of considering the benefits of treatment to quality-of-life and maintaining comfort. Finally, providing routine care such as turning the person and bathing, prompts practitioners about how to ensure care can be delivered which is of positive impact to the quality of life of the individual whilst not causing distress.

Consequences

Teams have advocated the simplicity of the tool allowing for use in educating more junior and less experienced team members as well as an aid to talk through decisions and difficult topics with families.