Enabling a Good Death for All: Refining the Core Structures of the Medicare Hospice Benefit to Reflect the Variation in Needs at the End of Life

Abstract

This thesis analyzes the recent growth of costs under the Medicare Hospice Benefit (MHB) and evaluates the potential to respond to these problems. The 2010 Patient Protection and Affordable Care Act mandates that the Centers for Medicare and Medicaid Services (CMS) update the core reimbursement structure of the MHB for the first time since the program’s inception in 1983. With the looming threat of the aging baby boomer generation, the nature of these revisions will have a significant impact on the landscape of end-of-life care in the United States and the fiscal sustainability of the Medicare program. The organizations advising the CMS on payment reform options have used extensive analysis of hospice claims data and cost reports to come to a uniform proposal. The primary differentiation of this thesis from the existing literature is its expansion of the scope of analysis beyond internal hospice data. Enlarging the arena of consideration to include the evaluation of alternative care options at the end of life, the care preferences of the aging baby boomer generation, the non-uniform nature of death, and the emergence of innovative care delivery patterns points to a solution very different than that suggested by the organizations advising the CMS. This thesis argues that the narrow scope of analysis used by the advising organizations causes them to overlook the underlying root of the problem – that the core structures of the Benefit are simply not designed for the majority of the beneficiaries that it serves. Despite the fact that the Benefit was shaped using a study sample that consisted solely of solid tumor cancer patients, the prevalence of patients with cancer has declined from 98.8% of hospice beneficiaries in 1984 to only 28.3% of beneficiaries in 2013. These patients with non-cancer diagnoses have a much less predictable trajectory towards death and different care needs in the final stages of life. Nevertheless, the MHB is set to retain its “one size fits all” structure that aims to reduce costs by limiting access to palliative care rather than customizing the program to fit the needs of different trajectories of decline. Adding an additional layer of specificity to the core structures of the MHB ultimately presents the opportunity to reduce the growing costs of hospice not by restricting access, but by reducing current inefficiencies in the system. This ultimately creates the potential to simultaneously improve the access, quality, and costs of end-oflife care before the aging of the baby boomer generation places an unprecedented strain on the Medicare system.