Trends in Restricting Symptoms at the End of Life from 1998 to 2019: A Cohort Study of Older Persons

OBJECTIVES To describe changes in the occurrence of restricting symptoms at the end of life from 1998 to 2019 and compare these changes according to the condition leading to death. DESIGN Prospective longitudinal study. SETTING Greater New Haven, CT. PARTICIPANTS A total of 665 decedents from a cohort of 754 community-living persons, 70 years or older. MEASUREMENTS The occurrence of 16 restricting symptoms was ascertained during monthly interviews. Information on the conditions leading to death was obtained from death certificates and comprehensive assessments that were completed every 18-months. For each restricting symptom, adjusted rates (per 100 person-months) were calculated separately for six multiyear time intervals. RESULTS From 1998 to 2019, rates decreased for five (31.3%) restricting symptoms (difficulty sleeping; chest pain or tightness; shortness of breath; cold or flu symptoms; and nausea, vomiting, or diarrhea), increased for three (18.8%: arm or leg weakness; urinary incontinence; and memory or thinking problem), and changed little for the other eight (50.0%: poor eyesight; anxiety; depression; musculoskeletal pain; fatigue; dizziness or unsteadiness; frequent or painful urination; and swelling in feet or ankles). The decrease in rates was most pronounced for shortness of breath, with a reduction from 15.0 (95% credible interval = 11.7-18.6) in 1998 to 2001 to 8.2 (95% credible interval = 5.9-10.5) in 2014 to 2019, yielding a rate ratio (95% credible interval) of 0.92 (0.86-0.98). When evaluated according to the condition leading to death, the results were similar, with 10 of the 13 statistically significant rate ratios representing decreases in rates over time and only 3 representing increases. CONCLUSION The occurrence of most restricting symptoms at the end of life has been decreasing or stable over the past two decades. These results suggest that end-of-life care has been improving, although additional efforts will be needed to further reduce symptom burden at the end of life.