A Synthesis of Theoretical Models to Guide Decision Support Interventions for Surrogate Decision-Making at Adult End-of-Life (S720)

Abstract

1.Describe what a theoretical model in general entails that purports to serve as the basis for decision support interventions.2.Be familiar with what theoretical models of surrogate decision-making related to adult end-of-life currently exist and what the major limitations of these models are in relation to intervention development.3.Understand what is needed in future theoretical models of surrogate decision-making in order to advance development of decision support interventions. Surrogate decision-makers (SDMs) take part in 1.5 million end-of-life (EOL) decisions per year. Many if not a majority of SDMs find the role inordinately burdensome, suffer negative after effects months to years afterwards, and often do make decisions concordant with patients’ wishes. To review the literature and synthesize theoretical models of surrogate decision-making at adult EOL to assess for potential use as explanatory foundations for decision support interventions. Data Sources: Literature published up to 2011 was reviewed using PubMed, MEDLINE, CINAHL, and EMBASE using the search terms “surrogate,” “proxy,” “end-of-life,” “life support withdrawal/withholding,” and “decision-making”. Selection criteria included: (a) studies or integrative reports of the empirical and theoretical research relevant to EOL surrogate decision-making; (b) articles aiming to produce a model of how SDMs make decisions for decisionally-incapacitated patients with relevance to the context of EOL; and (c) authors depicting diagrammatically their model of surrogate decision-making specifying key concepts and theoretical relationships. Articles focusing upon decision-making for decisionally-incapacitated children were excluded. A total of eight theoretical models meeting the selection criteria were identified. Five key insights were that: 1) diagrammatic maps of surrogate decision-making lacked consistency with model descriptions; 2) most models focused on description of concepts with a lesser focus on relational linkages and propositions; 3) ethical concepts and relationships have been insufficiently depicted in conceptual maps; 4) little emphasis was placed on how theoretical frameworks might guide intervention development; and 5) minimal attempts have been made to situate surrogate decision-making within a grander conceptual framework of decision-making. Several theories of surrogate decision-making at adult EOL have been proposed but further theory development is needed for design of decision support interventions.