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“They Make the Will, But They Want the Food:” Staff Perspectives on Challenges in Implementing Dementia Advance Directives Related to Stopping Feeding
Journal article   Open access   Peer reviewed

“They Make the Will, But They Want the Food:” Staff Perspectives on Challenges in Implementing Dementia Advance Directives Related to Stopping Feeding

Meredith Levine and Mercedes Bern-Klug
Journal of social work in end-of-life & palliative care, Vol.20(3), pp.254-275
07/2024
DOI: 10.1080/15524256.2024.2365368
PMID: 38949629
url
https://doi.org/10.1080/15524256.2024.2365368View
Published (Version of record) Open Access

Abstract

Dementia-specific advance directives are publicly available. This study breaks new ground by asking nursing home (NH) staff their perspectives of dementia-specific advance directives that offer the option of no assistance with feeding, once the ability to self-feed is lost. This pilot study uses qualitative descriptive methodology to plan, collect and analyze in-person interviews with 12 NH staff (nurses, social workers, nursing assistants, dietitians, physician) from one large facility in northeast USA. Results underscore logistic challenges (language ambiguity, the fluctuating nature of dementia, honoring “then-self” or “now-self” determination), and moral challenges related to harm. Key concepts in the directives need to be defined. Policies to operationalize the directives are needed. Attempting to implement these directives in NHs, in their current form, would likely be problematic.

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