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Barriers to Staff Involvement in End-of-Life Decision-Making for Long-Term Care Residents with Dementia

  • Nisha Sutherland (a1), Elaine Wiersma (a1) and Paula Vangel (a1)

Although providing direct care to residents with dementia, long-term care (LTC) home staff of registered nurses’, registered practical nurses’, and personal support workers’ involvement in end-of-life decision-making is rarely acknowledged. The purpose of this study was to examine barriers and facilitators to LTC home staff involvement in end-of-life decision-making for people with advanced dementia. We report on the barriers to staff involvement in decision-making. Using an interpretive descriptive design, four major barriers to staff involvement in decision-making were identified: (a) the predominance of a biomedical model of care; (b) a varied understanding of a palliative approach; (c) challenging relationships with families; and (d) a discomfort with discussing death. Findings suggest that the predominant biomedical model in LTC homes, while important, must be imbued with a philosophy that emphasizes relationships among residents with dementia, family and staff.

Bien que le personnel infirmier (autorisé et auxiliaire) et de soutien à la personne des centres de soins de longue durée (CSLD) fournisse des soins directs aux résidents atteints de démence, son implication est rarement considérée dans la prise de décisions en fin de vie. L’objectif de cette étude était d’examiner les obstacles et les facilitateurs à la participation du personnel des CSLD dans la prise de décisions liées à la fin de vie chez les personnes atteintes de démence sévère. Nous présentons les obstacles rencontrés en matière de participation à cette prise de décision pour ces travailleurs. Un design descriptif interprétatif a permis de mettre en évidence quatre principaux obstacles liés à la participation du personnel dans la prise de décisions : a) la prédominance d’un modèle de soins biomédical, b) les divergences dans la compréhension de l’approche palliative, c) la complexité des relations avec les familles, et d) le malaise associé aux discussions concernant le décès. Les résultats suggèrent que le modèle biomédical, qui est important et prédominant dans les CSLD, devrait s’inspirer d’une approche philosophique mettant davantage l’accent sur les relations entre les résidents atteints de démence, leur famille et le personnel.

Corresponding author
La correspondance et les demandes de tirés-à-part doivent être adressées à : / Correspondence and requests for offprints should be sent to: Nisha Sutherland, RN, PhD Assistant Professor Lakehead University 955 Oliver Road Thunder Bay, ON P7B 5E1 (
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We are grateful to staff and administration of the long-term care facilities for giving their time and participating in the study.

Funding: Lakehead University Senate Research Committee Research Development Fund

The authors declare that there are no conflicts of interest with respect to research, authorship, and publication of this article.

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