A Pilot Study of an Information Sheet Intervention to Support Surrogate Decision Making About Mechanical Ventilation in Dementia

Background: Aspiration pneumonia is a common complication of advanced dementia that can lead to respiratory failure requiring decisions about mechanical ventilation. Despite comfort-focused end-of-life (EOL) goals, many people with dementia receive mechanical ventilation, highlighting the need for improved decision-making support. Objectives: To develop and evaluate an information sheet intervention. Methods: We report pilot testing of an information sheet intervention, developed using qualitative feedback from surrogates and clinicians. Surrogates were randomized to intervention or control groups; pre/post-intervention outcomes were measured at baseline and eight-week follow-up. Results: Fourteen surrogates enrolled (93%), and 13 completed the study (93%; control = 4, intervention = 9) demonstrating feasibility. Surrogates found the information sheet acceptable (mean = 3.3/4, SD = 0.93) and expressed positive feedback. Knowledge improved in the intervention group (Cohen’s d = 1.08, p = 0.01) and remained unchanged among controls. No other outcomes differed at follow-up. Conclusion: The information sheet intervention was feasible, acceptable, and improved surrogates’ knowledge of dementia in preparing for EOL discussions.