Advance Care Planning for Persons with Intellectual and Developmental Disabilities: Findings from a Scoping Review

Background and Purpose: Adults with intellectual and developmental disabilities (IDD) are reaching advanced age at an unprecedented rate and current projections indicate that the number of people age 60+ will double by 2030. Despite experiencing the same conditions related to aging as the general population, people with IDD are too often left out of conversations around aging, serious illness, and end-of-life. Advance care planning (ACP) is usually only discussed when there is a medical crisis and even then, decisions are often made without actually discussing what matters to the adult with IDD. There is ample evidence to suggest that people with IDD are both capable and interested in being involved in ACP; yet, caregivers and health professionals frequently report being reluctant to engage in ACP discussions. Resultantly, adults with IDD tend to have low adoption of ACP. Our goal was to identify and map local, national, and international ACP tools that have been developed and/or adapted for use with adults with IDD. In this paper, we will present data from a scoping review exploring the ACP tools currently available for use with adults with IDD.

Methods: Using the Arksey and O'Malley methodological framework, we conducted a scoping review exploring existing ACP tools for use with adults with IDD. In order to identify the appropriate literature, we worked with a medical reference librarian and compiled and initially reviewed 2099 abstracts in Covidence. Data extraction was completed in RedCap. The inclusion criteria were: articles in English, must be for use with people with IDD, must be an ACP tool.

Results: There are fewer tools developed for people with IDD than members of the general population; however, there have been a number of tools that were initially designed for people with IDD or that have been adapted. These tools differ in how they are used and who completes them. Most of the tools emerged from the grey literature, which may indicate that many have been disseminated before being empirically validated.

Conclusions and Implications: Healthcare for adults with IDD is fraught with complex challenges and a lack of best practices. ACP is an effective form of supported decision making that empowers individuals to discuss what they want when they experience functional changes, age, become seriously ill, or are at the end of life. More work is needed to identify which and how ACP tools are used for adults with IDD. This project serves to increase awareness of the tools available to facilitate ACP for the approximately 6.5 million people in the United States with IDD. Future research must also explore how these tools are used and the impact of use for adults with IDD.