A national profile of kinlessness at the end of life among older adults: Findings from the Health and Retirement Study

Abstract

Background/objectives: The majority of end-of-life (EOL) caregiving is provided by unpaid family members. An increasing number of older adults are kinless (without close family/partnerships) and may have insufficient caregiver support to remain at home at the EOL. We therefore determined what proportion of older adults are kinless at the EOL and assessed the association of kinlessness with EOL care.

Design: Retrospective analysis of Health and Retirement Study decedents, 2002-2015.

Setting: US population-based sample.

Participants: Decedents age 51+ who died within 1 year of interview (n = 3844) and subset who are community-dwelling at last interview.

Measurements: Kinlessness was defined as lacking a spouse/partner and children. Primary outcome measure was location of death. Secondary outcome measures included contextual EOL measures such as symptom burden and caregiver support.

Results: A total of 7.4% of decedents were kinless at the EOL. Kinless decedents were more likely to be female, nonwhite, enrolled in Medicaid, living alone, or living in a nursing home prior to death. Although community-dwelling kinless decedents received fewer hours of caregiving per week at the EOL (34.7 vs. 56.2, p < 0.05) and were more likely to die in nursing homes (18.1% vs. 10.3%, p < 0.05) than those with kin, they did not have higher EOL symptom burden or treatment intensity (e.g., intensive care unit use). In multinomial logistic analysis controlling for demographic and illness characteristics, kinless decedents living in the community before death had a twofold increased risk of dying in the nursing home (odds ratio [OR] = 2.02 [95% confidence interval (CI) = 1.09-3.72]) and a trend toward increased risk of hospital death (OR = 1.60 [95% CI = 0.96-2.69]) versus home setting.

Conclusions: Kinless individuals are more likely to die in nursing homes, even if they are living in the community in their last year of life. Expanded long-term care services and policies are needed to enable all older adults regardless of their family support systems to receive high-quality EOL care.

Keywords: caregiving; end of life; families; kinlessness; location of death.