Advance care planning for patients with amyotrophic lateral sclerosis

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
• living will
• decision-aid
• surrogate decision-making
• end of life
• ethics

Acknowledgements

This research was supported by a grant from the Emily Davie and Joseph S. Kornfeld Foundation, administered by the Greenwall Foundation.

Declaration of interest

Two of the authors (BHL & MJG) have intellectual property and copyright interests for the decision-aid used in this study, Making Your Wishes Known: Planning Your Medical Future (MYWK), which is available online free of charge. A version of MYWK that can be widely distributed is currently under development in partnership with a private commercial enterprise.