Hospice Use, Hospice Quality, and Related End-of-Life Outcomes in Nursing Homes

Columbia University Health Sciences, New York NY

Investigators

Abstract

In the US, more than 15,600 nursing homes (NHs) provide long-term care to over 1.3 million elderly adults. About 40% of NH residents have advanced illness, and prior to the 2020 public health emergency, more than 27% of all deaths among people aged 65 years or older occurred in NHs, making high-quality end-of-life (EOL) care critical. Prior research has found substantial differences in NH EOL care related to multiple factors (i.e., resident-, NH-, hospice-, and community-level variables). Hospice, a government benefit, allows for EOL care to be provided by a specialist interdisciplinary team. Timely hospice enrollment is a best practice and is recommended for NH residents with advanced illness. However, among those dying in NHs, only 1/3 enroll in hospice, and 30% of enrolled residents receive hospice care for less than a week. There are gaps in knowledge about these differences in NH hospice enrollment, the quality of hospice care provided, and related EOL outcomes. Concerns about care differences in NHs increased during the public health emergency. In 2020, NHs were disproportionately affected, with NH mortality rising by 32%, while NH hospice use decreased in most states. How the public health emergency impacted hospice use and whether any related changes were long-lasting are also unknown. To address these gaps, we propose a sequential explanatory mixed-methods study guided by Donabedian’s Structure, Process, and Outcomes Quality Framework. Our aims are to: 1) Identify the multiple factors associated with differences in hospice enrollment and hospice quality of care over time, and how these relationships changed during the public health emergency; 2) Identify differences in NH EOL outcomes over time, the multiple factors that influence these differences, including hospice enrollment and the quality of hospice care, and how the public health emergency changed these differences; and 3) Describe perceived facilitators and barriers that contribute to hospice use, the quality of hospice care, and related EOL outcomes among NH residents. To achieve Aims 1 and 2, we will use administrative and public data from 2015 to 2024, including the Minimum Data Set and Medicare hospice and inpatient claims (n ≈ 8 million) of NH residents who died and the subset of this sample who enrolled in hospice (n ≈ 2 million). We will include all available NH residents and comprehensive measures of hospice enrollment, hospice quality of care, and EOL outcomes. To meet Aim 3, we will purposively sample 16 NHs that vary in location and are either high or low users of hospice. We will conduct semi-structured interviews with an administrator, hospice care planner, and 2 family caregivers of NH decedents (i.e., one that used hospice and one that did not) from each NH. Results from this study will inform evidence-based policies at the national, state, and NH level and influence practice-based initiatives that can promote access to high-quality hospice for Americans living and dying in NHs.