Alda Kiss, Krystina B. Lewis, Lissa Pacheco-Brousseau, Laura Wilding, Dawn Stacey
Institution of primary author:
University of Ottawa
Medical Assistance in Dying (MAiD) was legalized in Canada in June 2016. In March 2021, legislation was extended to permit the assisted death of persons whose natural death is not reasonably foreseeable. Little is known about the knowledge translation (KT) tools available to support patients and families making this decision. The aim of this study is to identify and quality appraise Canadian patient-targeted KT tools on MAiD to support patients making this decision.
An online environmental scan was conducted of Canadian MAiD patient-targeted resources between July and August 2021. Two independent reviewers appraised patient KT tools using the International Patient Decision Aids Standards (IPDAS) criteria to assess whether they qualify as patient decision aids (PtDAs) and using the Patient Education Material Evaluation Tool (PEMAT) to assess health literacy level for: (a) understandability, the ability for consumers of diverse backgrounds and varying levels of health literacy to process and explain key messages; and (b) actionability, the ability for consumers of diverse backgrounds and varying levels of health literacy to identify what they can do based on the information presented, with adequate PEMAT scores set at ≥70%. Reviewers resolved disagreements in scores by consensus. We descriptively synthesized the KT tools’ main characteristics, IPDAS, and PEMAT scores using means, standard deviations (SD), and ranges.
Of the 63 KT tools on MAiD, none met all IPDAS defining criteria to qualify as PtDAs (mean: 2.6 out of 7; range: 0-5). Key elements most frequently met include: (a) identifying the target audience (81%); (b) describing the condition (76%); and (c) describing the decision (56%). None reported benefits and harms of options. These findings are consistent with the absence of MAiD-related KT tools in the International A to Z Inventory of PtDAs. Fifty-one percent of KT patient tools had scored adequately for understandability (mean: 73%; SD: 13; range: 47-100%) and 17% scored adequately for actionability (mean 47%; SD: 25; range: 0-80%). Health literacy scores revealed the need to improve KT tools on MAiD to enhance the understandability and actionability for intended users. Thirty-five (56%) resources provided information on the legislative changes of March 2021.
Approximately half of the patient-targeted KT tools provided information on the 2021 legislative changes. From the publicly available Canadian KT tools on MAiD, none qualified as a PtDA. Given that 51% of MAiD KT tools received an adequate score for understandability and 17% for actionability, few MAiD resources are written at a health literacy level that all Canadians may understand. Future KT tools on MAiD need to better support shared decision making with resources written at a health literacy level that all Canadians may understand.Alda Kiss slides