Understanding End-of-Life Decision-Making Terminology Among African American Older Adults.
Karen O Moss, Nancy L Deutsch, Patricia J Hollen and 3 others
PMID 28990634WHAT IT FOUND
Family caregivers of African American adults with dementia gave varied meanings to end of life, often including funeral plans, confused advance directive with living will, and relied on providers and family.
Key findings
01Caregivers' meanings of end of life often included burial insurance or funeral plans, and some said it meant both before and after death.
02Caregivers were confused about the difference between advance directive and living will, and could accurately state the purpose of either one but not both.
03End-of-life decisions were made with family, the care recipient when possible, health care providers, and faith, rather than by the caregiver alone.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study used a convenience sample of 18 caregivers from one southeastern state, so the findings may not apply to other groups. The sample was specific to African American caregivers of African American older adults with dementia. Most care recipients' dementia type was reported as unknown or unclassified. Data were collected across several communities, leaving little time to build relationships. Some socially desirable responses may have occurred, although the interviewer was of the same race as participants. Member checking was done with only two participants. The study described understanding and experiences; it did not test whether clearer terminology improves care or outcomes.
The easy way to misread this
Do not conclude that explaining end-of-life terms to caregivers will improve outcomes. The study described 18 caregivers' understanding and decision-making experiences. It did not test an education intervention or measure health outcomes.