The Relationship of Loneliness to End-of-Life Experience in Older Americans: A Cohort Study

Abstract

Objectives: Little is known about the relationship between loneliness and end-of-life (EOL) experience including symptom burden, intensity of care, and advance care planning among older adults.

Design: Secondary analysis of the Health and Retirement Study (HRS).

Setting: Population based.

Participants: Decedents older than 50 years who died between 2004 and 2014 (n = 8700). Exclusions included those who were ineligible for surveys assessing loneliness (n = 2932) or had missing or incomplete loneliness or symptom data (n = 2872).

Measurements: Individuals were characterized as lonely based on responses to the three-item Revised University of California, Los Angeles Loneliness Scale in the most recent HRS survey before death. Outcomes were proxy reports of total EOL symptom burden, intensity of EOL care (eg, late hospice enrollment, place of death, hospitalizations, use of life support), and advance care planning. Results were expressed as adjusted odds ratios (aORs) with 95% confidence intervals (CIs).

Results: One-third of 2896 decedents (n = 942) were lonely. After adjusting for demographics, socioeconomic status, multimorbidity, depressive symptoms, family and friends, and social support, loneliness was independently associated with increased total symptom burden at EOL (ß = .13; P = .004). Compared with nonlonely individuals, lonely decedents were more likely to use life support in the last 2 years of life (35.5% vs 29.4%; aOR = 1.36; 95% CI = 1.08-1.71) and more likely to die in a nursing home (18.4% vs 14.2%; aOR = 1.78; 95% CI = 1.30-2.42). No significant differences in other measures of intense care (late hospice enrollment, number of hospitalizations, or dialysis use) or likelihood of advance care planning were observed.

Conclusion: Lonely older people may be burdened by more symptoms and may be exposed to more intense EOL care compared with nonlonely people. Interventions aiming to screen for, prevent, and mitigate loneliness during the vulnerable EOL period are necessary. J Am Geriatr Soc 68:1064-1071, 2020.

Keywords: advance care planning; aggressive care; end of life; loneliness; symptoms.

Figure 1:

Construction of the HRS decedent cohort from 2004-2014

Figure 2:

Proportion of lonely versus non-lonely older adults experiencing individual symptoms in the last year of life (n=2896)

Figure 3:

Unadjusted odds of symptoms experienced by lonely versus non-lonely older adults in the last year of life (n=2896)