Site of care in the last phase in life has shifted dramatically in the last two decades from institutional to community settings. The proportion of decedents dying in the hospital declined from 51% in 1999 to 37% in 2015 and the proportion of decedents dying at home increased from 22% in 1999 to 30% in 2015. Caring for those with serious illness in the home setting are more than 65 million informal caregivers, an estimated 29% of the adult population, who often experience adverse physical and psychological effects due to their caregiving role. Hospices support patients with serious illness and their caregivers through interdisciplinary care focused on pain and symptom management with the goal of enabling individuals to remain at home at the end of life. Use of hospice has risen in the past two decades from 10% to almost 50% of decedents concurrent with the rise in home death. Use of hospice is considered to be an indicator of high quality end-of-life care, and many studies have demonstrated it is cost-saving to the Medicare program. Yet how hospice impacts the financial burden of serious illness on patients and families is unknown. Existing studies of hospice enrollment focus exclusively on formal cost savings to the Medicare program or managed care programs without consideration of costs to families. It is not known if hospice use shifts economic burden onto families through higher out-of-pocket spending and informal care costs that may be required to care for patients at home. Second, although studies demonstrate strong associations between both patient characteristics (e.g., cancer diagnosis) and hospice characteristics (e.g., for-profit ownership) and Medicare costs, evidence on equivalent determinants of family spending (out of pocket costs and informal caregiving) are unknown. Third, our team's prior work has examined numerous aspects of continuity of hospice care including the impact of transitions after hospice enrollment (e.g., an emergency department visits, hospital admissions, or hospice disenrollment) on costs to Medicare. We have not evaluated the impact of transitions on family out-of-pocket spending or informal care. To address these questions, we will create a novel population-based dataset by linking the 1999-2017 Medicare Current Beneficiary Survey, a nationally representative panel survey of Medicare beneficiaries, to Medicare administrative and cost data and regional characteristics. Findings from this study will provide the foundation for policy solutions and innovative interventions to improve outcomes for families whose caregiving is an integral component of hospice care and an indispensable support to our formal healthcare system.
This proposal is relevant to public health because it examines the implications to patients and families of the shift in site of care from hospitals to community settings that is taking place across the United States. Hospice is the dominant model of home-based care for those at the end of life and the proposed research will elucidate the ways in which hospice enrollment, and continuity of care following hospice enrollment, impact both family financial outcomes and informal caregiving provided by families.
