Uncertainty in surrogate decision-making about end-of-life care for people with dementia: An integrative review

Abstract

AimTo describe uncertainty in surrogate decision-making regarding end-of-life care for people with dementia using Mishel's reconceptualized u ncertainty in illness theory.DesignIntegrative literature review using Whittemore and Knafl's approach.Data SourcesPubMed, CINAHL, EMBASE, Scopus and Web of Science were searched using terms such as uncertainty/unpredictability, decision-making/advance care planning/end-of-life care planning, surrogate/family/caregiver/proxy and dementia. The search was initially conducted on 28 September 2021 and updated on 31 July 2023.Review MethodsThrough systematic screening, 20 research articles were included in the analysis. Content related to uncertainty in surrogate decision-making regarding end-of-life care was extracted and analysed, focusing on the reconceptualized uncertainty in illness theory.ResultsFirst, surrogate uncertainty exists in various areas of surrogate decision-making regarding end-of-life care. Second, antecedents of surrogate uncertainty include numerous intrinsic and extrinsic factors. Third, surrogates exhibited some negative psychological responses to uncertainty but continually processed and structured their uncertainty through certain approaches, leading them to grow as decision-makers. Finally, research-based evidence on surrogates' processing of uncertainty and shifts to new life perspectives remains limited.ConclusionSurrogates' uncertainty in decision-making regarding end-of-life care for people with dementia is well characterized using the reconceptualized uncertainty in illness theory. Healthcare providers should help surrogates manage their uncertainty in surrogate decision-making more constructively throughout the dementia trajectory.Implications for the Profession and/or Patient CareThe findings highlight the importance of assessing how surrogates process uncertainty and gauging how to help them process uncertainty and transition to new life perspectives.ImpactThis review contributes to healthcare professionals' understanding of surrogates' uncertainty in end-of-life care planning for people with dementia, especially what they are uncertain about, what influences their uncertainty and how they process it.Reporting MethodThis study adheres to the PRISMA reporting guidelines.Patient or Public ContributionNo patient or public contribution.