Management of patients with amyotrophic lateral sclerosis

Standard recommendations for the clinical management of patient with ALS have been edited in recent years. These documents emphasise the importance of patient's autonomy.

To measure how these different recommendations can be applied in the context of a general hospital without a specific ALS clinic.

Review of medical records of 21 patients with an ALS diagnosis treated by the University Hospitals Geneva who died from 1996-2002.

Patients suffered from distressing symptoms during their last hospitalisation. Artificial nutrition was given to 5 patients. Six patients had non invasive ventilation (NIV). Written advance directives were only available in 2 cases. Discussions about theses issues were also conducted late in the evolution of the disease.

Some discrepancies between our daily practice and the existing recommendations exist, particularly regarding the key issues of artificial nutrition and ventilatory support.