Caregiver support and place of death among older adults

Abstract

Background/objectives: As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver experiences at end of life. We seek to examine (1) the association between family care availability and place of death; and (2) caregiving intensity associated with place of death. Design: 2017 National Health and Aging Trends Study and National Study of Caregiving; nationally representative cross-sectional study of deceased older adults and last-month-of-life (LML) caregivers. Setting: United States; all places of deaths. Participants: Three-hundred and seventy-five decedents and 267 LML caregivers. Measurements: Place of death (home, hospital, and nursing or hospice facility), family care availability (spouse/partner, household size, number of daughters and sons), caregiving intensity (hours of help provided at LML and a binary indicator for high care-related emotional difficulty).Results: 38.9% of older adults died at home, followed by hospital (33.1%), and nursing or hospice facility (28.0%). In an adjusted multinomial logistic regression, decedents with larger household size (odds ratio [OR]: 0.441; 95% confidence interval [CI]: 0.269-0.724) and more daughters (OR: 0.743 [95% CI: 0.575-0.958]) had lower odds of dying in nursing or hospice facility relative to dying at home. For older adults who died at home, caregivers provided 209.8 h of help at LML. In contrast, when death occurred in nursing or hospice facility, caregivers provided 91.6 fewer hours of help, adjusted for decedent and caregiver characteristics. Dying in hospital was associated with higher odds of caregiver emotional difficulty relative to home deaths (OR: 4.093 [95% CI: 1.623-10.323]).Conclusions: Household size and number of daughters are important determinants of place of death. Despite dying at home being associated with more hours of direct caregiving; caregiver emotional strain was experienced as higher for hospital deaths. Better support services for end-of-life caregivers might improve patient and caregiver experiences for home and hospital deaths.

Place, cause and expectedness of death and relationship to the deceased are associated with poorer experiences of end-of-life care and challenges in early bereavement: Risk factors from an online survey of people bereaved during the COVID-19 pandemic

“…Bereaved people reported worse experiences in relation to hospital and care home deaths than deaths at home or hospice, as in pre-pandemic studies [25][26][27][28] . In the first ten weeks of the pandemic in the UK, deaths in care homes increased by 220%, and home and hospital deaths by 77% and 90%, respectively, while hospice deaths fell by 20% 29 .…”

Risk factors associated with poorer experiences of end-of-life care and challenges in early bereavement: Results of a national online survey of people bereaved during the COVID-19 pandemic

“…Bereaved people reported worse experiences of hospital and care home deaths than deaths at home or hospice, as in pre-pandemic studies. [26][27][28][29] Modelling of routine data from the first 10 weeks of the pandemic in the UK (7 March-15 May 2020), found deaths in care homes increased by 220%, and home and hospital deaths by 77% and 90% respectively, while hospice deaths fell by 20%. 30 The increase in home deaths was sustained 31 and hospices shifted their resources to the community.…”

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

“…The availability of family care resources included being married during the last year of life, number of children (0–3, 4–6, >6), and living with family members ( Choi et al, 2021 ; Gomes & Higginson, 2006 ; Lei et al, 2021 ). Deceased oldest-old with family members (i.e., spouse, children and their spouses, grandchildren and their spouses, and other family members) or friends as their primary caregivers during the last year of life were considered informal care groups.…”

“… Gomes & Higginson, 2006 ) and being married during their last year of life ( Cross, Ely, et al, 2020 ; Escobar Pinzon et al, 2011 ; Gisquet et al, 2016 ), were strongly associated with the likelihood of home death. 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 ).…”

“…To inform current policy efforts for the long-term and EOL care services, it is significant to determine how family care resources and type of primary caregiving during the last year of life influence the place of death among the oldest-old in China. Previous studies demonstrated that potential family care availability could facilitate home death ( Escobar Pinzon et al, 2011 ; Lei et al, 2021 ). Because older adults with greater availability of family care resources are more likely to receive informal care ( Choi et al, 2021 ), family members may partially exert influence on place of death by providing EOL care.…”