Factors That Impact Family Perception of Goal-Concordant Care at the End of Life

Background: Goal-concordant care (GCC)-care aligned with a patient's known goals and values-is a measure of the quality of end-of-life (EOL) care that can be assessed by surveying family members after a patient's death. It is unknown whether patient characteristics affect this measure. Objective: The objective of the article was to examine family report of GCC and its associations with patient characteristics. Methods: Using the Health and Retirement Study, which is a nationally representative, longitudinal cohort of adults over age 50, we sampled decedents whose family completed the 2014 postdeath interview. Families reported frequency of GCC at the EOL. A multivariable regression model assessed the associations between family report of GCC and decedent characteristics. Results: Of 1175 respondents, 76% reported that the decedent "usually" or "always" received GCC. Proxy report of GCC was independently associated with age (adjusted odds ratio [AOR] 1.02, 95% confidence interval [CI] 1.01-1.03), having three or more chronic medical conditions (AOR 1.34, CI 1.02-1.77), the presence of written or verbal advance care planning (ACP) (AOR 1.38, CI 1.02-1.88), and an interaction term of race and ability to participate in EOL decision making (AOR 3.83, CI 1.02-14.40). African American race was not independently associated with GCC (AOR 0.73, CI 0.5-1.06). Conclusion: Family's report of GCC is associated with ACP, age, and multimorbidity. Being African American and perceived as able to participate in EOL decision making was significantly associated with report of GCC. Bringing the patient's voice into EOL care discussions through upstream ACP with likely surrogates may be particularly important to improving GCC for African Americans.