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End-of-life care: findings from a national survey of informal caregivers

End-of-life care: findings from a national survey of informal caregivers

Archives of Internal Medicine 167(1): 40-46

Background: Family and friends are thought to be the predominant providers of end-of-life care, although nationally representative data on this topic have been lacking.Methods: This study draws from the 1999 National Long-Term Care Survey and its Informal Caregivers Survey to characterize primary informal caregivers' experiences providing end-of-life care to chronically disabled communitydwelling older adults. Study participants were 1149 primary informal caregivers, stratified by care recipients' survival or death during the following 12 months.Results: An estimated 11.2% of the chronically disabled community-dwelling older adults died within 1 year of being interviewed. Among persons who died, 72.3% were receiving help from an informal caregiver at the time of the interview. End-of-life primary informal caregivers helped an average of 43 hours per week, 84.4% provided daily assistance, and caregiver support services were infrequently used (ie, respite care and support groups were used by less than 5% of caregivers). While end-of-life caregivers reported significant emotional (28.9%), physical (18.4%), and financial (14.0%) strains, more than two thirds endorsed personal rewards related to their helping role. Compared with primary informal caregivers of persons who survived the following 12 months, end-of-life caregivers provided significantly higher levels of assistance and reported more challenges and strains, but they were no less likely to endorse rewards related to their helping role.intense assistance with few supportive services. These data underscore the relevance of families to end-of-life care, and the potential benefit of better integrating families in patient care.

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Accession: 012968898

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PMID: 17210876

DOI: 10.1001/archinte.167.1.40

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