Substitute decision makers' experiences of making decisions at end of life for older persons with dementia: A systematic review and qualitative meta-synthesis.

Meta-aggregation of 20 themes into eight categories resulted in five synthesised findings. The findings were: 'trust'; 'guilt, mistrust and confusion'; 'translating quality of life'; 'negotiating families'; and 'uncertainty and reactivity'. Trust in healthcare personnel positively affected substitute decision makers and supported their adaptability. Substitute decision makers experienced guilt, mistrust, and confusion as they encountered increased complexity in care and health interventions as social needs changed. Substitute decision makers experienced complexities and struggles as they interpreted quality of life and negotiated end of life treatment decisions. Substitute decision makers experienced practical needs to negotiate family as they fulfilled their support roles. Ambiguity in advance care plans, limited knowledge of dementia, end of life uncertainties, and communication issues reduced substitute decision makers' proactivity. Implications: Being a substitute decision maker for people with advanced dementia at end of life is stressful. Health professionals need to be cognizant of substitute decision makers experiences and needs, and identify mechanisms to achieve support and education. The findings generate need for further investigation of interventions to meet the needs of substitute decision makers.