Ventilator dependency in ALS: Management, disease progression, and issues of coping

Abstract

The natural progression of amyotrophic lateral sclerosis (ALS) leads to respiratory failure and death. Artificial ventilation can prolong the course, leading to extreme degrees of weakness and dependence. Little specific information is available to counsel ALS patients about making the decision for artificial ventilation. In order to gain more information, we visited four ventilator-dependent ALS patients and their primary caregivers. We determined the neurologic state and level of function of the patients and interviewed their primary caregivers to assess medical care and management needs (both social and financial) and how they were being met. We also administrated questionnaires to assess the psychological well-being of both patient and primary caregiver and how the relationship between the patient and primary caregiver changed under these circumstances. © 1996 Demos Vermande.