What enables good end of life care for people with dementia? A multi-method study with key stakeholders.

Problem

In the UK dementia is the leading cause of death in older women. Most die in care homes, looked after by their GP, but a third die in acute hospitals. Research has shown considerable concern around the quality of end of life care (EoLC) in dementia, especially in comparison to cancer, with suboptimal symptom management and unnecessary hospitalisation. Considerable challenges to the delivery of high quality EOLC in dementia exist including: patients who are unable to communicate their needs/wishes; best interests decision making and a prolonged, uncertain dying trajectory. Despite the recent publication of updated national guidance on dementia care (NICE 2018), there is still little high quality research to inform evidence-based recommendations on the delivery of EoLC for people with dementia. The aim of this study was to better understand the factors that facilitate good EoLC in dementia from the perspectives of a range of key stakeholders (national experts, service managers, frontline staff, family carers and people with dementia) to develop a complex, evidence-based intervention for implementation and evaluation in primary care.

Approach

Participant views and experiences were explored using a range of qualitative methods (semi-structured interviews, focus groups and ethnographic observations from comparative care studies) with the aim of better understanding how EoLC for people with dementia and their families was enacted in real world practice. Data collection and analysis was an iterative process. Initial analyses focused on individual datasets followed by an integrative analysis through data workshops to compare themes (and subthemes) across, and within, each dataset. The large dataset comprises 119 interviews, 12 focus groups and 256 hours of ethnographic observation in care homes..

Findings

A total of 144 participants were recruited: 30 national experts; 33 service managers; 53 front line staff, 11 people with dementia and 17 family carers. Through the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: • timely planning discussions; • co-ordination of care; • effective working relationships with primary care; • managing hospitalisation; • recognition of end of life and provision of supportive care; • continuing care after death; • valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at an early stage in the illness to continuing care after death.

Consequences

This paper reports one of the largest empirical studies of EoLC in dementia which used a range of methods to assimilate evidence from different stakeholder groups including people with dementia Our findings have been used to inform the development of a complex intervention focused on the 7 key themes and delivered by a dementia specialist nurse, working in primary care teams. The intervention is currently being tested for its feasibility and acceptability before proceeding to determine its cost effectiveness compared to other models.