Is Care for the Dying Improving in the United States?

Abstract

Striking changes occurred in health care in the United States between 2000 and 2013, including growth of hospice and hospital-based palliative care teams, and changes in Medicare payment policies. The aim of this study was to compare informants' reports and ratings of the quality of end-of-life care for decedents between 2000 and 2011-2013. The study design comprised retrospective national surveys. Subjects were decedents age 65 years and older residing in the community from two time periods. Similar survey questions were asked at the two time periods. Bivariate and multivariate analyses were conducted, using appropriate survey weights to examine response differences between time periods, after adjusting for the decedent's age, race, pattern of functional decline, and the presence of a cancer diagnosis, as well as the respondent's relationship to the decedent. A total of 1208 informants were interviewed; 622 in 2000 and 586 in 2011-2013. Respondents from deaths in 2011-2013 were more likely to state that their loved ones experienced an unmet need for pain management (25.2% versus 15.5% in 2000, adjusted odds ratio [AOR] 1.9, 95% confidence interval [CI] 1.1-3.3). More respondents reported that religion and spirituality were addressed in the later time period (72.4% not addressed compared with 58.3%, AOR 1.4, 95% CI 1.1-1.9). High rates of unmet need for palliation of dyspnea and anxiety/depression remained. The overall rating of quality did not improve but decreased (with 56.7% stating care was excellent in 2000 and 47.0% in the later survey, AOR 0.70, 95% CI 0.52-0.95). Substantial unmet needs in end-of-life care remain. Continued efforts are needed to improve the quality of end-of-life care.