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Using Administrative Data to Characterize Patterns of End-of-Life Care in Diverse Settings


End-of-life (EOL) care in the United States is costly, highly fragmented, and uncoordinated. Despite devoting almost one third of all Medicare expenditures to caring for patients during their last year of life, studies have repeatedly shown that the overall quality of care and quality of life at the EOL is poor. In order to provide better quality care at the EOL, it is crucial that we have a solid understanding of how EOL care is provided under our current healthcare system.

This dissertation uses two large administrative datasets to explore and explain variations and patterns in the care patients receive at the EOL and contains three papers. Paper one explores the variations in the use of life-sustaining treatments before death. Paper two examines the impact the organization of our healthcare system has on the use and underuse of hospice services among patients in long-term care hospitals with chronic critical illness. Paper three explores the power of financial incentives in the form of Medicare reimbursements in influencing providers' decision on discharging patients from long-term care hospitals.

In this work, we showed that patterns of care near the EOL are highly variable across subgroups of patients, provider institutions, and geographic regions; and are heavily influenced by financial incentives as well as the supply of healthcare providers. More importantly, this dissertation illustrates the urgent need to develop new and expand on existing data sources with the relevant information required to gain a more in-depth understanding of what is driving the differences in care in order to deliver true patient-centered and family-oriented care near the EOL.

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