Institute of Epidemiology & Health Care


CAPS seminar October 2016

Title:  The aftermath of the Liverpool Care Pathway - developing heuristics (rules-of-thumb) for practitioners making end of life decisions for people with dementia 

Speaker: Nathan Davies 

Date & Time: Thursday 20th October; 13:00 - 14:00; Seminar rooms 1 and 2 

Abstract: End of life care for dementia is complex for a number of reasons not least because of memory problems. People with dementia may also be frail and have several health problems. Towards the end of life there may be many complications which can be distressing and create dilemmas for practitioners. These may include: difficulties with swallowing and therefore problems with eating, drinking and taking oral medication; agitation; a weakened immune system which may lead to infections; skin breakdown; and shortness of breath.

Such challenges may be eased with the development of heuristics (rules-of-thumb). Heuristics are schematic patters which are brief, easy to remember and that can be applied in complex situations, leading to action. For example, FAST is used in stroke: Facial weakness, Arm weakness, Slurred speech, Time to call 911.

This study aimed to develop a toolkit of heuristics to aid practitioners making difficult decisions when caring for someone with dementia at the end of life.

This study was split into three phases: 1) Development of heuristics using focus groups with family carers and health social care practitioners, and a co-design group, 2) testing of the heuristics in practice for 6 months in a variety of clinical settings, 3) evaluation and refinement of heuristics at three and six months.

In this seminar I will discuss the heuristics we developed. We identified four broad areas as difficult decisions at the end of life; eating/swallowing difficulties, agitation/restlessness, reviewing treatment/interventions, and providing routine care. Each topic consists of rules which are arranged into a diagrammatic flowchart. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency and if help is needed, and reflection about 'comfort-feeding' only or time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment/social causes, physical causes, and the health/wellbeing of the carer. Reviewing treatment/interventions guides practitioners through a process of considering the benefits of treatment to quality-of-life and maintaining comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners about ensuring they deliver care which is of a positive impact on quality-of-life.

Teams advocated the simplicity of the tool allowing for use in educating more junior, less experienced team members as well as an aid to engage in difficult conversations with families.