ACP Educator Video Program to Promote Goal-Concordant Care in Older Patients and those with Alzheimer's Disease and Related Dementias: Advancing Ethical Goals In Society (AEGIS)

About This Grant

ABSTRACT: OVERALL Every day in this country, thousands of older Americans die from serious illness, including hundreds of people with Alzheimer’s disease and related dementias (ADRD). A significant gap persists between the type of medical care people want when they have an advanced, serious illness and the type of care they end up receiving from the healthcare system, especially at the end of life. And for African American, Hispanic, rural, and other patients, the rate of non-patient-centered medical care at the end of life is disproportionately even higher. Advance care planning (ACP) has become increasingly important as patients and their care partners make decisions over time about medical care, such as whether to use a respirator or focus on comfort-oriented care. ACP aims to ensure patients receive care aligned with their values. Simple, easy-to-understand ACP decision tools are urgently needed to provide accurate information and overcome existing barriers. Over the last decade, our research group has created short video decision aids to help patients make medical decisions. Our prior trials have shown that an ACP Counselor Video Program in which ACP Counselors (i.e., nurses or social workers) utilize video decision aids when discussing ACP better inform patients, and lead to more ACP documentation and goal-concordant care. Major limitations of this prior work are: the limited numbers of rural patients; small numbers of patients with ADRD; and brief intervention, typically consisting of a single short interaction. To move this field forward, longitudinal trials in which patients are followed and receive an intervention over time are needed with many patients to promote medical decisions and the receipt of goalconcordant care. The overall objective of this U19 application is to create a research platform in which the decision-making needs of patients aged ≥65 with ADRD or other serious illness are addressed, with a focus on patients who have been overlooked in prior ACP work. The goal will be to conduct a large, pragmatic, randomized, waitlist-controlled trial. The trial will include 12,174 patients aged ≥65 with ADRD or other serious illness from three healthcare systems: Northwell Health; the hospitals and clinics affiliated with Indiana University; and Dartmouth Health. We hypothesize that the influence of our ACP Counselor Video Program, as compared to usual care, will lead to more ACP documentation and more goal-concordant care. Our Specific Aim for the Overall Science is: To fulfill the organization, processes, and infrastructure to conduct all aspects of a large pragmatic randomized waitlist controlled trial with an Administrative Core, an Implementation Core, and an Ethics Core.