Place of death among adults with interstitial lung disease in the United States, 1999-2023: a national population-based study

Abstract

Background: Interstitial lung disease (ILD) is a progressive disorder with high mortality and limited therapeutic options. National trends in the place of death among adults with ILD in the United States (U.S) remain poorly described, despite increasing emphasis on palliative and end-of-life care.

Method: We analyzed U.S. mortality data (1999-2023) from the Centers for Disease Control and Prevention's Wide-ranging Online Data for Epidemiologic Research (CDC WONDER) for adults aged ≥45 years with ILD. Deaths were categorized by location, and sociodemographic associations and temporal trends were assessed using multinomial logistic and Joinpoint regression.

Result: A total of 388 120 ILD-related deaths occurred between 1999 and 2023. ILD mortality increased steadily over the study period, with an average annual percentage change of 2.75% (95% CI, 2.55-2.97; P < 0.000001). Nearly half occurred in hospitals (48.5%), followed by home (31.2%), hospice/nursing facilities (17.4%), and outpatient/emergency room (ER) (2.9%). The proportion of inpatient deaths declined from 60.7% in 1999 to 41.4% in 2023. In contrast, home deaths nearly doubled from 21.5% to 38.6%, while hospice/nursing facility deaths increased from 14.3% in 1999 to a peak of 19.5% in 2018, ending at 17.0% in 2023. Outpatient or ER deaths remained relatively stable throughout the study period. Adults ≥85 years most often died in hospice/nursing facilities, whereas those aged 75-84 years most often died in hospitals.

Conclusion: Deaths in ILD have shifted away from hospitals toward home and hospice, while demographic disparities persist. These findings demand urgent end-of-life planning and equitable, targeted palliative care.

Keywords: end-of-life care; interstitial lung disease; mortality trends; palliative care; place of death.