Table 2 Mechanism themes for healthcare professionals (HCP [31]) and family carers
Theme | Sub-theme | Reported by: | |
|---|---|---|---|
HCP | Family carers | ||
Level of HCPs confidence | Confidence/uncertainty about best approach to EOL care | ✓ | |
Fear of litigation | ✓ | ||
Fear of death (avoidance)/Accepting (comfortable with dying/death) | ✓ | ||
Family carers’ confidence in care staff | Family lacking confidence in care quality leading to supplementing and monitoring care | ✓ | |
Family uncertainty about EOL care | Confusion/uncertainty regarding EOL care decisions, particularly around food and eating | ✓ | ✓ |
Family avoiding discussions regarding EOL | ✓ | ✓ | |
Family carers not recognising the need/importance of having these conversations or who to go to | ✓ | ||
Family carers lacking information to inform decisions and unaware that ACPs can be altered; difficulty evaluating care quality | ✓ | ||
Resources for improving EOL care and supporting families | Admiral nurses | ✓ | ✓ |
Post-death reflections | ✓ | ||
Building relationships between people with dementia, family carers, care staff and healthcare professionals | ✓ | ||
Observation and experiential learning as more effective (particularly where staff have limited writing skills) | ✓ | ||
Advance Care Planning, in particular DNAR as a resource for comfort care/good death | ✓ | ||
Gold Standards Framework as a resource to provide good care but variable use across care homes | ✓ | ||
Family carers’ determination in accessing NHS continuing healthcare funding | Limited resources and a poor understanding of the complex needs of those with advanced dementia appear to restrict access to continuing care funds | ✓ | |
CCGs uncertainty about whether dementia specific palliative care is required | Uncertainty as to whether specific dementia palliative care services are necessary | ✓ | |