Background: Lonely adults are prone to a variety of poor health outcomes, including accelerated functional and cognitive decline, depression, and premature mortality. As a result, lonely adults may be prone to higher health-related suffering, triggering increased healthcare utilization and possibly undesired aggressive care, particularly as they approach end of life (EOL). However, little is known about the EOL experience of this population. We aimed to quantify the relationship of loneliness to symptom burden, intensity of care, and advance care planning in older adults at EOL.
Methods: We conducted a pooled cohort analysis of lonely and not lonely decedents in the Health and Retirement Study (HRS) from 2004 to 2014, a nationally representative study of individuals over the age of 50. Proxy informants were interviewed regarding decedents’ EOL experience within 2 years of a participant’s death. We defined loneliness using the 3-item Revised University of California Los Angeles (R-UCLA) Loneliness Scale derived from a decedent’s most recent HRS interview prior to death. We assessed baseline characteristics of lonely versus not lonely individuals, including demographics, socioeconomic status, multimorbidity, depressive symptoms, and measures of social network (including partner status) and social connection (reliance on others for support). We used multivariable logistic, ordinary least squares, and negative binomial regression where appropriate to examine the independent association between loneliness and (1) total symptom burden in the last year of life; (2) measures of intense EOL care; and (3) advance care planning.
Results: Of 3,065 decedents, 33% were lonely. Loneliness was independently associated with total symptom burden at EOL (ß = 0.16, 95% CI 0.05-0.28; p=0.005), after adjusting for demographics, socioeconomic status, multimorbidity, depressive symptoms, and measures of social network and social connection. Lonely decedents had higher odds of receiving life support in the last 2 years of life (AOR 1.52, 95% CI 1.03-2.24; p=0.03). However, loneliness did not have an independent association with other measures of EOL care intensity, including place of death, hospitalizations, ICU admissions, nursing home utilization, or hospice use. Lonely individuals had higher odds of engaging in EOL care discussions with their next of kin (AOR 1.70, 95% CI 1.13-2.54; p=0.01) and assigning a durable power of attorney (DPOA) (AOR 1.51, 95% CI 1.01-2.24; p=0.04), but had similar rates of documenting discussions and participating in EOL decisions.
Conclusions: Lonely older adults suffer from increased symptoms at EOL despite higher advance care planning and similar, if not higher, EOL healthcare utilization. These associations were independent of objective social network and social connection. Targeted interventions for lonely individuals are needed to improve EOL care and quality of life.