Table 1 Summary table of findings by theme and whether supported in diary or interviews
Themes | Findings | Supported in diary | Supported in interviews |
|---|---|---|---|
Educating family and staff about dementia progression and EOL care | Families and staff needing and wanting more information about diagnosis, symptoms and progression of dementia | ✓ | ✓ |
NH staff lacking confidence to initiate and have EOL conversations | ✓ | ✓ | |
Staff attributing symptoms and behaviours to dementia without trying to identify an underlying cause | ✓ | ||
Training and case scenarios increasing staff confidence and being able to see things from the families’ perspective | ✓ | ✓ | |
Discussions with family appear to increase their capacity to make informed decisions, eg around cardiopulmonary resuscitation | ✓ | ✓ | |
Family sessions generated much discussion and appeared a good avenue for education | ✓ | ✓ | |
Usefulness of written information to support discussions | ✓ | ||
Importance of ICL as a role model to staff in having conversations with family and communicating with residents with advanced dementia | ✓ | ||
Appreciating the value of in-depth EOL discussions (over documentation) | Importance of ongoing dialogue with family to build relationships, provide reassurance and allow time for family to process information | ✓ | ✓ |
NH staff prioritising documentation such as DNAR or not for hospitalisation over ongoing dialogue – task oriented approach and not appreciating the complexity and need for individualised approach to these discussions | ✓ | ||
Importance of addressing family member’s current issues and concerns before discussing future plans | ✓ | ||
Need to acknowledge family members’ grief and guilt | ✓ | ||
Difficulties communicating in English prohibit in-depth and sensitive conversations about EOL | ✓ | ✓ | |
Importance of information provided in a sensitive way | ✓ | ✓ | |
Providing time and space for sensitive discussions | Not suitable having sensitive conversations with family in communal areas such as lounge or dining room | ✓ | |
Spending sufficient time with family to address their questions and explore their concerns – including follow-up sessions/ongoing dialogue. The ICL was able to provide this time. | ✓ | ✓ | |
NH staff and GP having multiple demands preventing spending focused and uninterrupted time with family | ✓ | ✓ | |
Having an independent healthcare professional or team with responsibility for EOL discussions | ICL role was independent from GP and NH and considered to be primarily in interests of resident and family | ✓ | ✓ |
Independent person provides alternative and fresh view of the residents’ needs and care | ✓ |