Me & My Wishes: Concordance of End-of-Life Preferences between Residents with Dementia, Family, and Staff.

Abstract

Objective: Me & My Wishes involves videos of persons living with dementia talking about their end-of-life (EOL) care preferences. This study aimed to examine the concordance of EOL treatment and psychosocial preferences expressed by assisted living community and nursing home residents in these videos with family and staff knowledge of preferences. Design: Randomized wait-list control. Setting/Subjects: Assisted living and nursing home residents in the United States, and their family members and caregivers. Measurements: Five EOL treatment preferences (cardiopulmonary resuscitation or CPR, breathing machine, tube feeding, life support, and pain treatment) and four near EOL psychosocial preferences (having family at the bedside, engaging in faith practices such as prayer, having a pet at bedside, and engaging in activities such as being read to or listening to music) extracted from residents' videos and captured through family and staff surveys. Results: Thirty-six resident videos were shared with family (N = 50) and staff (N = 38) during care plan meetings. Concordance between residents' stated EOL treatment preferences and family and staff knowledge improved, with results showing a treatment effect at time of sharing the video (family: Beta = 0.21, p < 0.001; staff: Beta = 0.35, p < 0.001). Conclusion: Our findings indicate that sharing Me & My Wishes videos improved family and staff concordance of EOL psychosocial and treatment preferences for assisted living and nursing home residents living with dementia. Personalized videos conveying resident preferences can help informal and formal caregivers understand the resident as a person and foster concordant care. Clinical Trial Registration Number NCT03861429.