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

Abstract

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. To develop and evaluate an information sheet intervention. 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. 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 <i>d</i> = 1.08, <i>p</i> = 0.01) and remained unchanged among controls. No other outcomes differed at follow-up. The information sheet intervention was feasible, acceptable, and improved surrogates' knowledge of dementia in preparing for EOL discussions.