Family caregivers' advocacy in voluntary stopping of eating and drinking: A holistic multiple case study.
Jasmin Eppel-Meichlinger, Sabrina Stängle, Hanna Mayer and 1 others
PMID 34751005WHAT IT FOUND
Family caregivers accompanying voluntary stopping of eating and drinking often became advocates when healthcare professionals refused support or pressured the dying person to eat and drink.
They monitored care almost around the clock, defended the person's will, and were often exhausted.
Key findings
01Caregivers who accepted the loved one's will to die by voluntary stopping of eating and drinking developed into advocates to protect that person's self-determination.
02Some healthcare professionals refused to support voluntary stopping of eating and drinking, and caregivers described food or fluids being offered or administered against the dying person's wishes.
03Caregivers who lacked advance information or practical support felt alone and exhausted, while those who knew the legal basis felt more stable.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study included only 17 family caregivers who agreed to share their experiences, so it may not represent caregivers who opposed voluntary stopping of eating and drinking or were too distressed to take part. The sample was mostly Swiss, with only one caregiver from Germany and one from Austria, so the findings may not transfer well to other health systems or countries. The study is qualitative and descriptive, so it cannot show how often advocacy, exhaustion, trauma, or satisfaction occur, or whether professional support caused better outcomes. Some participants were primary nurses included as family caregivers, so their professional knowledge and distance may differ from those of lay family caregivers.
Declared interests
The authors declare that they have no conflict of interest.
The easy way to misread this
Do not read the caregivers' satisfaction or trauma as evidence that voluntary stopping of eating and drinking works or fails. This is a qualitative study of 17 selected family caregivers' experiences, not an outcome study of patients or caregivers.