Care by Visiting Nurses for Amyotrophic Lateral Sclerosis Patients Who Have Difficulty Communicate in a Totally Locked-In Syndrome

Abstract

This study aimed to investigate how visiting nurses comprehend and cater to the needs of patients with Totally Locked-In Syndrome (TLS) who are unable to communicate effectively due to amyotrophic lateral sclerosis. Four nurses caring for two TLS patients were surveyed by participant observation and semi-structured interviews. The results revealed the following categories related to understanding the wishes of a patient: “looking carefully at the expressions of the patient’s eyes to gauge their condition,” “ascertaining the patient’s condition based on their physical signs,” and “empathizing with the patient’s suffering through a personal connection with the patient from before the onset of TLS,” as well as the categories related to care respecting the patient’s wishes: “providing care that makes them feel comfortable,” “talking with the patient to help them feel the ‘present’ and ‘themselves’,” “acknowledging and conveying the patient’s uniqueness,” and “looking after the health of the patient’s family.” Nurses provide care by interpreting patients’ conditions and feelings based on their expression of eyes.