Abstract

This study examined whether a computer-based decision aid for advance care planning (ACP) could help improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and the clinicians who treat them. Prior to patients with ALS engaging in ACP using the decision aid (and completing pre-/post-questionnaires), the ALS clinic team was surveyed about patient wishes for end-of-life care for 3 hypothetical vignettes (12 treatment decisions total). The clinic team was then re-surveyed 3 months after patients had used the decision aid. These responses were then compared with patient responses to the vignettes, and a concordance score calculated for the agreement between patients and the clinic team. For the 44 participants (66% male, 73% married), concordance between patient wishes and the clinic team decisions was significantly higher post-intervention (pre: M=54%, SD=34.3 → post: M=93.2%, SD=10.3; p <.001). Additionally, patients reported high satisfaction with their decisions about end-of-life care (M=26.4, SD = 3.2; 6= lowest satisfaction, 30=highest), low decisional conflict (M=28.8/80, SD = 8.2), and high satisfaction with the decision aid (M=52.7/60, SD=5.7). Further, patient knowledge regarding ACP increased post-intervention (pre: 47.8% correct responses → post: 66.2%; p <.001) without any adverse effect on patient anxiety or sense of self-determination. These findings suggest that a computer-based decision aid for ACP is well accepted by patients with ALS and that its use can significantly improve clinicians' understanding of patient wishes regarding end-of-life medical care, as well as increase patient knowledge regarding ACP.