Symptom Burden and Hospice Use of Nursing Home Residents Before Death

Key Message : Among U.S. nursing home residents near the end of life, those enrolled in hospice experienced significantly greater symptom burden than those not enrolled, underscoring hospice’s crucial role in managing severe symptoms. Findings highlight the importance of recognizing symptom burden to guide timely hospice referral and improve end-of-life care quality.

Abstract:

Background: Near the end of life, nursing home residents experience high symptom burden in a context of multi-morbidity and functional decline(I). Hospice can improve symptom management in nursing homes, but is underutilized(II).

Objectives: To describe symptom burden among nursing home residents near the end of life, comparing hospice-enrolled residents versus un-enrolled.

Methods: We constructed a national decedent cohort of U.S. nursing home residents >65 years old who died in 2018 using Minimum Data Set (MDS) 3.0 linked to Medicare claims. Symptom burden was measured using an MDS-mapped Edmonton Symptom Assessment Scale (ESAS) score for (1) symptom presence and (2) symptom severity. Descriptive statistics characterize ESAS scores at the MDS assessment before death. Generalized mixed-effect models examine hospice enrollment relationship with ESAS scores adjusting for resident and facility characteristics.

Results: The decedent cohort of 165,364 residents (mean age 84.8 yrs [SD 8.6], 59.4% female) included 106,951 (64.7%) enrolled in hospice. Mean ESAS presence score (range 0-10) was 3.24 [SD=1.7] and mean ESAS severity scores (range 0-99) was 22.7 [SD=13.6]. Hospice enrollees had significantly higher ESAS scores (hospice vs non-hospice: mean ESAS presence scores=3.36 [SD=1.75] vs 3.0 [SD=1.71]; mean ESAS severity scores=24.0 [SD=13.7] vs 20.5 [SD=13.0]). After adjustment, hospice was associated with a higher ESAS presence score (beta=0.25 [p <.0001]) and severity score (beta=2.53 [p <.001]). The magnitude of each component severity score (range 0-10) was higher among hospice enrollees: pain (2.80 vs. 2.52), tiredness (3.62 vs. 3.17), poor appetite (2.64 vs 2.03), diarrhea/bowel incontinence (5.94 vs 5.24), dyspnea (1.76 vs 1.69), depression (1.82 vs. 1.67), and anxiety (2.93 vs. 1.89), and poor sleep (1.84 vs 1.69).

Conclusion: Nursing home residents enrolled in hospice had significantly greater symptom burden than unenrolled. A 3-point difference in mean physical ESAS scores exceeds the minimal clinically important difference(III). Findings underscore hospice’s critical role in managing severe symptoms.

References: I. Morley JE. End-of-Life Care in the Nursing Home. J Am Med Dir Assoc. 2011;12(2):77-83. doi:10.1016/j.jamda.2010.11.012
II. Miller SC, Mor V, Wu N, Gozalo P, Lapane K. Does Receipt of Hospice Care in Nursing Homes Improve the Management of Pain at the End of Life? J Am Geriatr Soc. 2002;50(3):507-515. doi:10.1046/j.1532-5415.2002.50118.x
III. Hui D, Shamieh O, Paiva CE, et al. Minimal Clinically Important Difference in the Physical, Emotional, and Total Symptom Distress Scores of the Edmonton Symptom Assessment System. J Pain Symptom Manage. 2016;51(2):262-269. doi:10.1016/j.jpainsymman.2015.10.004