Patterns of Unmet Care Needs and Place of Death Among Older Adults with Chronic Diseases

Background/Purpose: Although community-based surveys consistently show that older adults want to die in their own homes, the majority will die in either a hospital or long-term care setting. Additionally, millions of older Americans experience adverse consequences linked to inadequate assistance with personal or household tasks each year. Unmet or under-met care needs increase risk of hospitalization, institutionalization, and morbidity at the end of life. While a growing body of research has focused on sociodemographic disparities in the prevalence of unmet care needs and place of death among older adults, less is known about the relationship between unmet care needs and place of death at the intersection of race and socioeconomic status. Therefore, this study examined patterns of unmet care needs and place of death among older adults to identify disparities in care and inform policy and programs.

Methods: Utilizing data from the National Health & Aging Trends Study Round 5 - representative sample of older adults aged 65 years and older living in the U.S- this study used last month of life interviews including validated measures of perceptions of care needs as they relate to self-care activities of daily living. Unmet care needs were operationalized by whether individuals had help in the last month of life with self-care activities of daily living (dressing, bathing, eating, transferring, and toileting). Bivariate analyses were conducted using Pearson's chi-square test to compare decedent characteristics and perceptions of informant respondents who reported care were consistent versus inconsistent with their loved one's wishes. All analyses were conducted using appropriate survey weights.

Results: Consistent with existing literature, preliminary findings from this analysis suggest that an overwhelming majority of the sample died outside of the home - hospitals (27.82%), nursing homes (25.86%), and hospice residences (9.77%). Of the quarter of the sample that died at their homes (28.84%), roughly 88% were White, 6% were Black, and 5% were Hispanic. 70% of older adults using hospice in their last month of life died at home as compared with the 30% using hospice who died outside of the home. 11% of Black older adults did not use hospice in their last month of life, as compared with 5% of Black older adults who did. The highest rate of unmet care needs was related to bathing, where 80% of older adults indicated needing help with this activity of daily living during the last month of their life. Additional analyses until January 2021 will further investigate how individual characteristics impact unmet care needs and place of death among this population.

Conclusions/Implications: Our initial models point to important trends in unmet care needs and place of death among older adults in their last month of life. These findings suggest that despite a preference to die at home, many older adults continue to die elsewhere. Further, a majority of older adults who die at home use hospice care which highlights the need for targeted policies to improve assistive services and enhance access to affordable end of life healthcare and caregiving services.