Severe acute brain injuries (e.g., stroke) are critical neurological conditions that demand rapid, well-considered decisions on behalf of patients who often cannot express their care preferences. Advance directives are documents intended to record these preferences, providing guidance for clinicians and loved ones during complex care decisions. Despite ongoing initiatives, including digitalization, advance directives often fall short in promoting thoughtful, informed decision-making about care options. This limitation affects the provision of goal-aligned care for individuals with severe acute brain injuries.

In this project, we aim to design and develop a digital tool to support individuals in articulating informed preferences for hypothetical scenarios involving disability due to severe acute brain injuries. Our design process will incorporate insights from interviews with individuals affected by such injuries, following the International Patient Decision Aid Standards and user-centered design frameworks for decision aids. By promoting the collection of well-informed advance directives, our tool will have the potential to foster neurocritical intensive care that aligns with individuals’ preferences.