Project Overview

Background: Substitute decision makers (SDMs) have a crucial role in making medical decisions and honoring end-of-life wishes for adults who have lost capacity, including those living with dementia or those in long-term care (LTC). However, SDMs often lack the support and education required to make these decisions, which contributes to stress, anxiety, guilt and depression. The need for adaptable supports for SDMs has been identified as a gap by end-user groups. Current resources provide little support in preparing the SDM for the legal, practical, ethical and emotional realities of decision-making.

Study objective: To conduct a scoping review to identify evidence-based resources/tools for SDMs, as well as to outline domains of support and determine resource/tool effectiveness and/or efficacy.

Methods: Following the Joanna Briggs Institute manual and the PRISMA-ScR reporting guidelines, we conducted a scoping review using the Population-Concept-Context search strategy: Population – SDMs for seniors who have lost decision-making capacity; Concept – supports, resources, tools, interventions; Context – any context outside of ICU where a decision is made on behalf of an adult (>25 years) including acute care, community, LTC.  Databases searched included MEDLINE, Embase, CINAHL, PsycINFO, and Abstracts in Social Gerontology and SocIndex. Grey literature was identified using the CADTH Grey Matters tool, targeted website browsing, and other relevant grey literature databases.

Results: The database search identified 4817 citations that were screened by two independent reviewers. Articles were included if they evaluated a tool/intervention that helped a family/friend/caregiver SDMs outside of an ICU setting. 719 articles from the database search proceeded onto second level (full text) screening. The grey literature search is also underway.

Significance: This is phase 1 of a 4-phase study aimed at producing an evidence-informed toolkit for usability testing with SDMs. This toolkit has the potential to reduce the distress of SDMs and positively impact those who rely on SDMs.