The Involvement of Caregivers in the End-of-life Care of an Older Adult Living in a Long-term Care Home: A Qualitative Case Study with Nurses and Relatives.
Isabelle Auclair, Anne Bourbonnais
PMID 38619920WHAT IT FOUND
Care partners and nurses described end-of-life involvement as more than decisions: visits, monitoring symptoms, mouth care, mobilizing, and receiving clear updates.
Preferences varied widely, and nurses often inferred wishes rather than asking.
Key findings
01Care partners were involved in ways beyond care planning and decision-making, including personal care such as mobilization, hygiene, and mouth care.
02Care partners wanted to be briefed when the older adult's health declined, and one described receiving information that was too superficial.
03Care partners’ wishes for involvement varied widely. When wishes were not stated, nurses sometimes tried to deduce them from behavior.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only seven participants were interviewed, all from one long-term care home, so the themes may not fit other homes or other care partners. Recruitment stopped early because of the COVID-19 pandemic, and the authors had planned one more care partner. The care partners were well educated, Caucasian, and two were friends rather than relatives, which limits transferability. The study included nurses but not other health professionals who provide end-of-life care. Accounts were retrospective, which may affect memory and the few strategies suggested.
The easy way to misread this
Do not read this as evidence that involving care partners improves end-of-life care. It is a small qualitative study of seven participants at one home, and it describes what nurses and relatives reported, not what worked.