End of life (EOL) care is intensive, expensive, and highly dependent on where one lives. This poses quality, economic, and equity concerns. This study will estimate the effectiveness of the last 20 years of health system reforms that align financial incentives and encourage care coordination on EOL care received in this country. In addition to identifying the overall impact, we also will examine the effectiveness of these interventions among patients with ADRD, due to the complexity of the disease, the forecasted prevalence of disease burden, and the particularly fragmented nature of the systems these patients face. Finally, we will drill down and identify how EOL care is changing, through patient planning, communication between patients and their providers, or through increased facilitation of patients receiving the EOL care they desire, in order to identify where further interventions should be focused.

This study has three main aims:

Aim 1: Create and disseminate a database of health system reforms – at the insurer, hospital, local, and federal level – that provide financial incentives or encourage care coordination, and thus have the potential to influence EOL care delivery.

Aim 2: Measure the effect of the health system reforms in changing the delivery of EOL care.

Aim 3: Separately estimate the effect of the health system reforms on planning vs. communication vs. facilitation of providing less-intensive EOL care to those who want it.