Aides want more EOL care involvement

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Frontline workers often are the first to notice dementia patients' pain and detect changes in their behavior, but a new study finds long-term care and hospice facilities need to do more to include them in end-of-life treatment.

In-depth interviews of 14 British and Irish healthcare workers found they were often frustrated by their exclusion from multidisciplinary team meetings — a signal to some that they were unqualified despite 15 years' average experience. 

Workers pointed out a series of pain-related signs in those with dementia — physical rigidity, wounds, reluctance to move — that might seem normal to clinicians who see patients less often. Most said being able to access patient information could help them improve pain management.

Researchers found three themes in the interviews: Ability to recognize pain, reporting pain, and desire for formal training in pain monitoring. Healthcare assistants gave more comprehensive reports when they felt valued; negative relationships led to perfunctory reporting. 

Writing in the January issue of BMC Palliative, study authors urged providers to reverse the stigma.