For older adults with advanced dementia, end-of-life care increasingly entails high-intensity treatments that offer limited benefits and may cause harm. Efforts to curb this trend by targeting individual patient and clinician behaviors have yielded marginal improvements. In contrast to traditional approaches, our research charts a fresh course by investigating the influence of systemic and cultural factors as driving forces behind high-intensity, potentially non-beneficial life-sustaining treatments near the end of life for patients with advanced dementia.

We implement an innovative combination of methods to explore this premise. Through comparative ethnographic research—conducted in the United States and the United Kingdom—and human-centered design, we investigate how different clinical cultures across hospitals and healthcare systems impact the intensity of end-of-life care. Building upon the insights gained, we use human-centered design to develop system-level interventions to effectively reduce the use of high-intensity, potentially non-beneficial life-sustaining treatments in patients with advanced dementia near the end of life.

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Through this research, we hope to pave the way for meaningful change in end-of-life care for older adults with advanced dementia, enhancing patients’ and caregivers’ experiences and ensuring that end-of-life care aligns with patients’ goals, values, and best interests.