Hospice Use in Older Adults with Alzheimer's Disease and Related Dementias: Patterns, Policies, and Caregiver Experiences
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PROJECT SUMMARY Almost half of the over 1.5 million Medicare beneficiaries who enroll in hospice each year have Alzheimer’s Disease and Related Dementias (ADRD). Yet, hospice is poorly suited to the needs of persons with dementia (PWD) and remains stuck in a model of care designed around the needs of people with cancer. This poor fit has resulted in worrisome patterns of hospice use among PWD, including very long length of stay (LOS) and high rates of disenrollment. Long stays are a problem because they increase Medicare expenditures on hospice, which has skyrocketed from $2 billion to almost $20 billion between 2000 and 2018. Disenrollment is a problem because it disrupts continuity of care, creating burdensome transitions for patients and caregivers. PWD, in whom prognosis is notoriously difficult to predict, have the longest average LOS in hospice (151 days versus 53 days in cancer) and are four times more likely to experience disenrollment after long stays in hospice than enrollees with cancer. Hospice Payment Reform of 2016—the first change to Medicare hospice reimbursement structure since its inception—changed hospice reimbursement from a single per diem rate to a tiered model and was intended to de-incentivize long stays in hospice. While qualitative evidence suggests that Payment Reform and other regulatory approaches have disproportionately impacted hospice use patterns in PWD, the specific impact of Payment Reform on length of stay and disenrollment in PWD is unknown. The objective of this proposal is to evaluate the impact of Payment Reform on LOS and disenrollment in PWD, key outcomes of interest to both payors and patients. We will build upon our longitudinal 100% cohort of almost 1 million Medicare Beneficiaries with dementia enrolled in hospice between 2012-2017 to add a cohort of people with cancer and additional years following Payment Reform. We will complement these quantitative analyses with qualitative interviews with dementia caregivers and hospice staff. The aims are: 1) Assess the impact of 2016 Payment Reform on hospice length of stay and hospice Medicare expenditures in persons with dementia versus cancer; 2) Assess the impact of 2016 Payment Reform on hospice disenrollment patterns and outcomes in persons with dementia versus cancer; and 3) Characterize experiences and views of hospice care for PWD in a diverse set of caregivers of PWD and hospice staff from a variety of organizational roles. Knowledge from this study is necessary to the continued refinement of hospice policies and transforming end- of-life care to meet the needs and trajectories of PWD and their caregivers, and will provide critical training for Dr. Lauren Hunt’s development as a leading researcher in hospice and end-of-life care for PWD.
