The Terminal Phase of an Intractable Neurological Disease from the Viewpoint of Nursing Care: The Importance of the Promotion of a Barrier-Free Mind for ALS Care

Abstract

Amyotrophic lateral sclerosis (ALS) is a particularly serious intractable neurological disease. Patients with ALS have high mortality rates if they are not put on an artificial respirator. Even with an artificial respirator, individuals with ALS are forced to witness their own physical deterioration. Because 24 hour care is usually required, an intense relationship ofter develops between patients with ALS and family caregivers. This relationship forms an invisible barrier and can impede a smooth introduction of external services. As a result, there can be a degradation in the quality of care. The purpose of this paper is to describe the voluntary efforts of patients and family caregivers in order to break down this barrier and to discuss what types of care support are available to promote barrier-free minds.