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. 2017 Aug;18(5-6):388-396.
doi: 10.1080/21678421.2017.1285317. Epub 2017 Mar 5.

Advance care planning for patients with amyotrophic lateral sclerosis

Benjamin H Levi  1 , Zachary Simmons  2 , Courtney Hanna  3 , Allyson Brothers  4 , Erik Lehman  5 , Elana Farace  5 , Megan Bain  6 , Renee Stewart  6 , Michael J Green  7
Affiliations

Advance care planning for patients with amyotrophic lateral sclerosis

Benjamin H Levi et al. Amyotroph Lateral Scler Frontotemporal Degener. 2017 Aug.

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.

Keywords: Advance care planning; advance directive; decision-aid; end of life; ethics; living will; surrogate decision-making.

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