A framework for nurses working in partnership with substitute decision-makers for people living with advanced dementia: A discursive paper.

AIM: To describe and discuss clinical strategies for nurses working in partnership with substitute decision-makers for people living with advanced dementia. BACKGROUND: By providing person-centred care to patients living with advanced dementia, nurses are positioned to work in partnership with substitute decision-makers who make healthcare decisions related to advanced care. Because the experience of being substitute decision-makers is complex and stressful, nurses need skillsets for working in partnership with substitute decision-makers. DESIGN: In this discursive paper, an innovative framework for working in partnership with substitute decision-makers is proposed. METHOD: Evidence-based findings from a systematic review provided five domain foci for the partnership framework. In each domain, two clinical strategies were discursively proposed. Clinical strategies were hypothesised from research findings and insights from the authors' nursing experiences. Then, topical literature was searched, and findings were used to support the discursively argued strategies. DISCUSSION: To deal with complexities and reduce stress for substitute decision-makers, an innovative Nurse-Substitute Decision-Maker Partnership Framework for use in the context of advanced dementia is proposed and discussed. The partnership framework consists of five domains: Building trust, Exploring emotions, Translating quality of life, Encouraging proactivity and Negotiating families. Within these domains, ten strategies to support the practices of clinical nurses to work in partnership with substitute decision-makers are discussed. RELEVANCE TO CLINICAL PRACTICE: In the framework, the ten clinical nursing strategies are designed to provide targeted care to substitute decision-makers in areas that are known to cause complexity and stress to them. The Nurse-Substitute Decision-Maker Partnership Framework has been designed to improve nurse-substitute decision-maker partnerships and reduce the stress experienced by substitute decision-makers as they work through the complexities associated with advanced dementia.

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

BACKGROUND: Substitute decision makers are important for people with advanced dementia, particularly at the end of life. Substitute decision makers report issues in providing support, and physical and psychological consequences from the role. However, there is no synthesised evidence about how substitute decision makers are affected by and experience making decisions for older persons diagnosed with dementia at end of life. Methodology: A protocol for a qualitative systematic review was developed. Seven articles met both inclusion and research quality criteria following a comprehensive search for published and unpublished studies (January 2007-2017, English language). Meta-synthesis was achieved through meta-aggregation of the results from included studies. RESULTS: 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.