Discussing edaravone with the ALS patient: an ethical framework from a U.S. perspective

Abstract

The recent approval of edaravone by the United States Food and Drug Administration has generated a mix of hope tempered by reality. The costs of the drug, both monetarily and with regard to intensity of treatment, are high. The benefits, while modest, will be viewed through a very different lens by individuals depending on their goals of care. By virtue of our training and experience, physicians are ideally suited to understand and explain new treatments to our patients. As healthcare providers with a fiduciary responsibility to our patients, we must make sure they are fully informed about both the costs and benefits of non-curative therapies such as edaravone, and be prepared to discuss these in the context of their goals of care and potential impact on quality of life. Respect for our patients’ autonomy is critical when discussing these issues, but we should always be guided by the ethical principles of beneficence and non-maleficence.

Keywords:

• Amyotrophic lateral sclerosis
• edaravone
• ethics
• quality of life

Declaration of interest

Dr. Yeo reports no conflict of interest.

Dr. Simmons has served as a paid consultant for Cytokinetics, has received research support from Cytokinetics, Mallinckrodt, Flex Pharma, and Synapse, and receives payments for duties as Editor of Muscle & Nerve from Wiley.