Advance care planning for patients with amyotrophic lateral sclerosis. Issue 5 (3rd July 2017)

• Record Type: Journal Article
• Authors: Levi, Benjamin H.; Simmons, Zachary; Hanna, Courtney; Brothers, Allyson; Lehman, Erik; Farace, Elana; Bain, Megan; Stewart, Renee; Green, Michael J.
• Is Part Of: Amyotrophic lateral sclerosis and frontotemporal degeneration. Volume 18:Issue 5/6(2017)
• Page Start: 388
• Page End: 396
• Publication Date: 2017-07-03
• Subjects: Advance care planning -- advance directive -- living will -- decision-aid -- surrogate decision-making -- end of life -- ethics; 616.839
• DOI: 10.1080/21678421.2017.1285317
• Languages: English
• ISSNs: 2167-8421

Abstract

Abstract: Purpose : To determine whether an advance care planning (ACP) decision-aid could improve communication about end-of-life treatment wishes between patients with amyotrophic lateral sclerosis (ALS) and their clinicians. Methods : Forty-four patients with ALS (>21, English-speaking, without dementia) engaged in ACP using an interactive computer based decision-aid. Before participants completed the intervention, and again three months later, their clinicians reviewed three clinical vignettes, and made treatment decisions ( n = 18) for patients. After patients indicated their agreement with the team's decisions, concordance was calculated. Results : The mean concordance between patient wishes and the clinical team decisions was significantly higher post-intervention (post = 91.9%, 95% CI = 87.8, 96.1, vs. pre = 52.4%, 95% CI = 41.9, 62.9; p <0.001). Clinical team members reported greater confidence that their decisions accurately represented each patient's wishes post-intervention (mean = 6.5) compared to pre-intervention (mean = 3.3, 1 = low, 10 = high, p <0.001). Patients reported high satisfaction (mean = 26.4, SD = 3.2; 6 = low, 30 = high) and low decisional conflict (mean = 28.8, SD = 8.2; 20 = low, 80 = high) with decisions about end-of-life care, and high satisfaction with the decision-aid (mean = 52.7, SD = 5.7, 20 = low, 60 = high). Patient knowledge regarding ACP increased post-intervention (pre = 47.8% correct responses vs. post = 66.3%; p <0.001) without adversely affecting patient anxiety or self-determination. Conclusion : A computer based ACP decision-aid can significantly improve clinicians' understanding of ALS patients' wishes with regard to end-of-life medical care.