The locus of end-of-life care is shifting from hospitals and nursing homes to the community, intensifying pressure to ensure the availability of high-quality end-of-life care at home. The proportion of U.S. decedents dying at home has increased from 22 percent in 2000 to 31 percent in 2017 and for those dying of dementia it has almost doubled in the same period. End-of-life care at home can be extremely challenging, particularly in the context of dementia. Persons with dementia (PWD) residing at home have similar medical acuity to those in nursing homes and experience high pain and symptom burden, difficulty communicating care preferences, behavior challenges, preventable hospitalizations, and frequent transitions across healthcare settings. Hospice is the dominant model of home care for seriously ill individuals at the end of life. Hospices provide a constellation of interdisciplinary care encompassing pain and symptom management, and psychosocial, spiritual and caregiver support with the goal of enabling individuals to remain at home at the end of life. The potential of hospice to improve the end-of-life experience for community-dwelling PWD and their families is enormous. Yet our understanding of the impact of hospice use among those with dementia is almost exclusively based in the nursing home setting. We lack a population-level understanding of the impact of hospice on outcomes relevant to PWD who remain in the community at the end of life. We will address these knowledge gaps using two population-based studies, the National Health and Aging Trends Study and the Health and Retirement Survey that contain rich demographic, socioeconomic, healthcare utilization, and end-of-life care assessments of older adults. These datasets provide an unprecedented opportunity to examine multiple facets of the end-of-life experience of a national sample of community-dwelling PWD and how hospice impacts that experience. Further, the 20-year timespan of these data will enable us to examine access to hospice for community-dwelling PWD over time and the impact of recent hospice policy changes on hospice use.
Our aims are: 1) Evaluate the impact of hospice on perceived quality of end-of-life care (unmet needs for pain and symptom management, interactions with care teams, and goal concordant care) for community-dwelling PWD; 2) Evaluate the impact of hospice on end-of-life healthcare utilization (nursing home admission, hospitalization, care transitions, and home death); and 3) Characterize longitudinal patterns of hospice use by community-dwelling PWD and quantify the impact of Medicare policy changes on hospice use rates. Knowledge gained from this proposal will elucidate how hospice impacts outcomes relevant to end-of-life dementia care in the community, identify potential barriers to its use and thus where additional or alternative models of care may be needed, and inform policies to prepare our healthcare system for the rising prevalence of end-of-life dementia care in our communities.