Abstract
BackgroundPeople with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Existing policy, guidance and recommendations are based largely on expert opinion because of a shortage of high quality, empirical research. Previous studies have tended to consider the views and experience of particular groups. Whilst providing important evidence, they do not take into account the diversity of perspectives of different stakeholders. The Supporting Excellence in End of life care in Dementia (SEED) programme involved multiple stakeholder groups and an integrative analysis to identify key components of good EoLC for people with dementia and to inform a new intervention.MethodsThe views of national experts, service managers, frontline staff, people with dementia and family carers were explored using a range of qualitative methods (semi-structured interviews, focus groups, discussions and observations of routine care). The large dataset comprises 116 interviews, 12 focus groups and 256 h of observation. Each dataset was initially analysed thematically prior to an integrative analysis, which drew out key themes across stakeholder groups.ResultsThrough the integrative analysis seven key factors required for the delivery of good EoLC for people with dementia were identified: timely planning discussions; recognition of end of life and provision of supportive care; co-ordination of care; effective working relationships with primary care; managing hospitalisation; continuing care after death; and valuing staff and ongoing learning. These factors span the entire illness trajectory from planning at a relatively early stage in the illness to continuing care after death.ConclusionsThis unique study has confirmed the relevance of much of the content of existing end of life frameworks to dementia. It has highlighted seven key areas that are particularly important in dementia care. The data are being used to develop an evidence-based intervention to support professionals to deliver better EoLC in dementia.
Highlights
People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer
The integrative analysis identified seven key factors which influence the delivery of good EoLC for people with dementia (Table 2)
Planning discussions National experts and service managers viewed timely planning discussions as key to meeting the preferences and wishes of people with dementia at the end of life: and, if there hasn’t been discussions with relatives, everybody becomes anxious at that point, and that’s why putting all these things in place is quite significant, so that you are not ending up in a situation where you are in the middle of a crisis, and you are having to make rash decisions
Summary
People with advanced dementia often experience suboptimal end of life care (EoLC) with inadequate pain control, increased hospitalisation, and fewer palliative care interventions compared to those with cancer. Concerns exist about the quality of end of life care (EoLC) in dementia, especially in comparison to people dying with cancer, with research demonstrating suboptimal symptom management [5,6,7]. Transitions at the end of life (e.g. from home to hospital) remain an issue in dementia, there is some evidence that the situation may be improving in some countries [11] or for some patient groups, with one study finding that patients with severe dementia were less likely to be transferred between care settings in the last 3 months of life and less likely to die in hospital [12]
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