Is Quality of End-of-Life Care Changing in the United States: A Comparison from 2012 to 2016

Background/Purpose: As nearly two million older adults die in the United States each year, the quality of end-of-life (EOL) care is an increasingly important topic for both health policy makers and health care providers. Over the past decades, many efforts have been made to improve the quality of EOL care to ensure comfort, patient-centered availability of choice, and quality of life of a dying person. In recent years, as new approaches and innovative models have been developed and launched, it becomes important to understand if the quality of EOL care has changed over time.

While numerous studies in various settings have been conducted that examine quality of EOL care, several limitations of previous studies are evident, such as cross-sectional designs, limited sample size, and non-comprehensive measurement of EOL care. Therefore, the purpose of the current study is to provide a national description on ten indicators of EOL care across a five year period (2012-2016) and to investigate if disparities are evident by sex, race and care settings.

Methods: The current study used survey data from the National Health and Aging Trends Study, a nationally representative sample of Medicare beneficiaries ages 65 or older. We used five cohorts (2012-2016), a total of 2,212 participants, who died between waves. Information on EOL care experience during the last-month of life was obtained from proxies. 

Quality of EOL care was evaluated using measures validated by a National Quality Forum. They examine ten domains of EOL care: the overall rating of care, doctors’ involvement, whether the decedent experienced pain, breathing troubles, and anxiety/sadness, whether the needs for personal care and religiosity were met, whether the decedent was treated with respect, the families were kept informed, and whether decisions about treatment were made appropriately.

Descriptive statistics were used to characterize decedent’s sex, race, and the age at death, and proxy’s sex, and relationship to the decedent. Each domain of EOL care was stratified by sex, race and place of residence in the last month of life. Trend comparisons for five years were conducted. Cohorts’ weights were applied to main representativeness of all Medicare beneficiaries.

Results: While the percentages of people who reported not receiving enough help with breathing difficulties significantly decreased from 2013 to 2016, the unmet needs for psychological well-being (i.e., anxiety/sadness) increased from 2014 to 2016. The percentage of unwanted care significantly decreased after 2013, but increasingly families reported not being kept informed of health-related status. People in residential care settings reported lower rates of dissatisfaction across all ten indicators across five years. Compared to males, females reported lower rates of unmet needs for pain management and breathing problems, but higher rates of unmet needs for anxiety/sadness than males. Compared to the general population, African Americans reported lower rates of not treated with respect and not clear with the in-charged doctors.

 Conclusions and implications: Over the last five years, the quality of EOL care has remained stable in most aspects, despite evolving technologies. However, disparities by sex, race, and care settings are still apparent.