Using Human-Centered Design to Improve Serious Illness Care for Older Adults with Advanced Dementia

Abstract

ContextOlder adults with advanced dementia increasingly receive potentially non-beneficial, high-intensity life-sustaining treatments and goal-discordant care in the United States. Interventions to address this issue have shown limited success. ObjectivesTo use human-centered design (HCD) with clinicians caring for older adults with advanced dementia to develop intervention ideas to reduce high-intensity, goal-discordant treatments near the end of life. MethodsWe used the first two steps of HCD, inspiration, and ideation, to understand clinicians’ perspectives regarding challenges in providing goal-concordant care for older adults with advanced dementia and to generate intervention ideas. In inspiration, we conducted in-depth interviews with clinicians caring for older adults with advanced dementia. We analyzed interviews using thematic analysis to identify themes and insights, which we synthesized into design opportunities using HCD. In ideation, we completed structured brainstorming sessions with study investigators, physicians, and designers to generate ideas for interventions at different healthcare system levels. ResultsDuring inspiration, we developed seven themes about clinicians’ experiences providing serious illness care for older adults with advanced dementia. We identified six instances where two or more themes were in tension. We synthesized these tensions into five insight statements capturing clinicians’ key challenges, which we reframed as three design opportunities. Brainstorming sessions conducted as part of ideation generated 132 solution ideas for these three opportunities, with participants selecting nine for testing. ConclusionThe HCD process generated ideas at multiple healthcare system levels to address an enduring challenge in serious illness care by involving clinicians, researchers, and designers in intervention design.