Family Caregiving and Place of Death: Insights From Cross-national Analysis of the Harmonized End-of-Life Data

Abstract

Objectives Family is largely overlooked in research on factors associated with place of death among older adults. We determine if family caregiving at the end of life is associated with place of death in the United States and Europe. Method We use the Harmonized End of Life data sets developed by the Gateway to Global Aging Data for the Survey of Health, Ageing and Retirement in Europe (SHARE) and the Health and Retirement Study (HRS). We conducted multinomial logistic regression on 7,113 decedents from 18 European countries and 3,031 decedents from the United States to determine if family caregiving, defined based on assistance with activities of daily living, was associated with death at home versus at a hospital or nursing home. Results Family caregiving was associated with reduced odds of dying in a hospital and nursing home, relative to dying at home in both the United States and Europe. Care from a spouse/partner or child/grandchild was both more common and more strongly associated with place of death than care from other relatives. Associations between family caregiving and place of death were generally consistent across European welfare regimes. Discussion This cross-national examination of family caregiving indicates that family-based support is universally important in determining where older adults die. In both the United States and in Europe, most care provided during a long-term illness or disability is provided by family caregivers, and it is clear families exert tremendous influence on place of death.

Advance directives completion and hospital out‐of‐pocket expenditures

“…First, we focused on hospital out‐of‐pocket costs rather than all types of health care costs such as long‐term‐care and home‐care costs, as these costs may not be as amenable to change by having an AD due to their different goals of care related to each care venue. Additionally, Exit Interviews are not weighted for national representation as the HRS does not apply sample weight variables for decedents 26 . Depending on the timing of death, participants may have had low out‐of‐pocket costs if they died close to the last core interview, while others surviving the entire 2 years between interview windows could have had relatively higher costs.…”

“…Participants are interviewed every 2 years following enrollment, and among those who die, HRS Exit Interviews are conducted with a proxy approximately 2 years following the participant's death. For this study, we used Harmonized HRS End‐of‐Life (1992−2014) data for 12,952 decedents' death‐related details, health conditions, health care utilization including hospital out‐of‐pocket costs, and AD completion status 24 . We only included participants from wave 6 through wave 12 Exit Interviews ( N = 9228) as earlier waves reported combined hospital and nursing home out‐of‐pocket costs, making it impossible to separate these costs.…”

“…The value was assigned to zero if the decedents did not use any hospital services. Depending on the year of death, the cost of hospital out‐of‐pocket expenses was adjusted to 2014 dollars in the Harmonized HRS End of Life data set 26 …”

“That Little Bit of Time”: Transition-to-Hospice Perspectives From Hospice Staff and Bereaved Family

“…Research has examined hospice staff perceptions of patient and family desire for control when referred to hospice ( Noh, 2019 ). Caregivers are an important determinant of the end-of-life experience, and their presence has been associated with an increased likelihood of dying at home ( Ailshire et al, 2021 ). Yet, how caregivers perceive the hospice admission has not previously been explored.…”

Availability of family care resources, type of primary caregiving and home death among the oldest-old: A population-based retrospective cohort study in China

“…One nationally representative study from the United States, which set the presence of a spouse, household size, and number of daughters and sons as indicators of potential family care availability, found that larger household size and more daughters could increase the likelihood of dying at home ( Lei et al, 2021 ). A recent cross-national study affirmed that family caregiving was positively associated with home death in the United States and European countries ( Ailshire et al, 2021 ).…”