Advance care planning for patients with ALS: Feasibility of an interactive computer program

Abstract

This pilot study examined whether an interactive, computer based decision aid can help patients with amyotrophic lateral sclerosis (ALS) engage in effective advance care planning. Individuals being treated for ALS (>18 years old, English speaking, and without dementia) were recruited to use a decision aid and complete pre-/post-intervention measures. Seventeen individuals completed the pre-intervention questionnaires and decision aid; 16/17 (94%) completed the post-intervention measures, and none reported any burden from the intervention. ‘Overall satisfaction’ with the decision aid was very high (mean = 8.5 ± 0.27: 1 = not at all satisfied, 10 = extremely satisfied), as was ‘perceived accuracy’ of the computer generated advance directive in reflecting patients’ wishes (mean = 8.6 ± 0.27: 1 = not at all accurate, 10 = extremely accurate). Participants judged the ‘amount of information’ provided by the intervention appropriate (mean = 6.8 ± 0.38: 1 = too little, 5 = about right, 10 = too much), and on a detailed, 12-item assessment judged the decision aid very positively (mean = 4.16 ± 0.16: 1 = very dissatisfied, 5 = very satisfied). The intervention prompted many participants to discuss advance care planning with loved ones and to share their computer generated advance directive with their physician. This study demonstrates that individuals with ALS can successfully complete a computer based decision aid for advance care planning, and suggests that this intervention can help promote effective advance care planning.

Key words::

• Advance care planning
• advance directive
• living will
• decision aid
• amyotrophic lateral sclerosis
• surrogate decision making
• ethics

Acknowledgements

This research was supported by grants from the Penn State University Social Science Research Institute. Benjamin Levi and Michael Green have intellectual property and copyright interests for the decision aid used for this study, and anticipate making the decision aid available through Penn State University as a marketed product.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.