Caregivers' perceptions of illness severity and end of life service utilization in advanced heart failure.
Windy Alonso, Judith E Hupcey, Lisa Kitko
PMID 27788935WHAT IT FOUND
Most family caregivers of advanced heart failure patients did not recognize severity or terminality.
Only 19 of 40 patients who died received palliative care or hospice, and caregivers who recognized severity were more likely to have received services.
Key findings
01Fifty-four of 80 caregivers did not perceive the patient’s illness as severe, and 53 of 80 did not realize the patient was dying during the initial interview period.
02Of 40 patients who died during study enrollment, 19 received palliative care or hospice, and 8 of those 19 died in the hospital.
03Caregivers who perceived illness severity were more likely to have received palliative care or end-of-life services, while acknowledgement of terminality alone was not significantly related to service use.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The sample consisted of White/Caucasian participants, so findings may not transfer to other groups. Post-death interviews were completed with 34 of 40 caregivers whose patients died, so service-use findings may miss six caregivers. This analysis used only initial and post-death interviews, not all monthly interviews. Caregiver awareness may have been influenced by living with the patient or caring from a distance, which was not assessed. The study cannot show that caregiver perception caused service use or that education would change referrals.
Declared interests
The caregivers were recruited from a longitudinal study supported by NIH/NINR grant # 5R01-NR013419. The supplied text does not include a conflict-of-interest declaration.
The easy way to misread this
Do not read the association between caregiver severity perception and service use as proof that caregiver education caused more referrals. This qualitative study observed perceptions and service use, and 19 of 40 patients who died received palliative care or hospice.