Considerations in patient education in amyotrophic lateral sclerosis (ALS)

Abstract

Given the relentless progression of amytrophic lateral sclerosis (ALS) and the lack of causative therapy, breaking the news to ALS patients and their families is a daunting task for any physician. Obviously, such a task cannot be standardized. However, it is now recognized to be the first and one of the most sensitive and important steps in palliative care. Information should be offered in a stepwise fashion, in the presence of the patient's family. All questions from the patient should be discussed openly, with emphasis on the positive aspects. Available therapeutic options should be reviewed, pointing out the fact that all symptoms of ALS can be alleviated by palliative therapy. At the onset of dyspneic symptoms, the terminal phase of the disease and the option of mechanical ventilation should be discussed.