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End-of-life healthcare and hospice use in Alzheimer's Disease: A comparative analysis using the Utah Population database.

Our team will use the Utah Population Database (UPDB) to conduct an analysis comparing end of life hospice and healthcare services of Dementia and Cancer patients. Hospice eligibility is currently benchmarked to Cancer trajectories and may not fit the realities of Dementia where prognostication and the disease trajectory is less clear. As a result, Dementia patients may experience delayed admission to hospice, defined as not enrolling until death is imminent, and/or live discharge from hospice, defined as outliving eligibility due to greater than expected patient life. Both of these events can be profoundly distressing to patients and families, and both minimize the benefit that comes from hospice use at the end-of-life. This study will inform national Center for Medicare and Medicaid Services (CMS) policy, and address the U’s strategic goals by: 1. Generating new knowledge about disease specific hospice care, 2. Benefiting the community by informing innovative health policy that will improve end of life care for patients and their family caregivers, 3. Promoting student success by including two students from the “Health Society and Policy” interdisciplinary undergraduate program, providing an unparalleled deeply engaged learning opportunity, 4. Ensuring continued viability of the UofU through use of the UPDB, a unique resource of the University. This project will improve access and hospice service delivery to patients and their families at end of life.

Current Status

Our project addressed end-of-life (EOL)health care and hospice use, focusing on differences for those with Alzheimer’s Disease, which has a less predictable EOL trajectory compared Cancer and Heart Disease. Using a decedent cohort from the Utah Population Database(1998-2016, n=17,320), we found differences in EOL hospice and health care use by cause of death. Each decedent was linked to first-degree family members, allowing for additional analyses of how patient EOL may have lasting effects on the family’s health and health care needs prior to and following patient death. Our results have implications for how EOL health care might be tailored by cause of death, and might be used to support both patient and family. We conducted these analyses alongside three UROP students from the "Health, Society & Policy" major, an interdisciplinary undergraduate degree. Each student developed and presented a project addressing: 1) differences in EOL needs by admitting diagnoses, 2) ethics of hospice eligibility, and 3) policy alternatives for hospice eligibility. Our work help solidify a larger team of interdisciplinary scholars, who will continue to use the cohort extracted from Utah Population Database to do innovative and policy-relevant analyses about families and EOL health care in the future.


Margaret Clayton
College of Nursing
College Of Nursing
Project Owner

Katherine Supiano
College of Nursing
College Of Nursing

Rebecca Utz
College of Social and Behavioral Science

Project Info

Funded Project Amount

End-of-life Alzheimer's Disease Live Discharge Hospice Secondary data analysis UPDB

Project Status
Funded 2020

View poster (pdf)
Last Updated: 12/7/22