Advance Care Planning and Cognitive Impairment: Care Partner-Reported Quality of Communication

Advance care planning (ACP) with patients who have cognitive impairment and their care partners is important but challenging to deliver and evaluate.

To evaluate change in care partner-reported quality of communication by examining sub-groups with improved vs. worsened scores and compare groups using mixed methods.

This is an explanatory sequential mixed methods design that draws on the intervention arm of an ACP trial involving primary care patients 80+ years old with cognitive impairment and care partners (n = 88). We examined change in quality of communication about end-of-life care questionnaire in sub-groups for whom care partner-reported scores improved or worsened at six months by ± 1 standard deviation. We evaluated attributes of ACP conversations (i.e., duration), comparing improved and worsened sub-groups. Blinded to sub-group, we qualitatively compared ACP conversations.

Cognitive impairment screening indicated 68% of patients had scores consistent with dementia. Relatively few care partners reported improved (n = 13; 15%) or worsened quality of communication scores (n = 12; 14%); most had no change (n = 63; 72%). Worsened score group conversations were longer, (mean 42 minutes) compared to improved and no change groups (mean 30-33 minutes). Qualitative findings may explain differences: 1) Care partners with worsened scores expressed concerns about serious illnesses, isolation, and dissatisfaction with the care team. 2) Care partners with improved scores expressed agreement about end-of-life treatment preferences and received more strategies for negotiating caregiving challenges.

Our results highlight ACP improvement opportunities for persons with cognitive impairment by addressing care partner concerns.