Editors' note: An observational study on quality of life and preferences to sustain life in locked-in state

Abstract

It is well-established that for many patients with chronic neurologic conditions—even in patients in a locked-in state (LIS)—they may experience a good personal quality of life. In their retrospective cohort of 19 patients with amyotrophic lateral sclerosis (ALS) in LIS; Drs. Kuzma-Kozakiewicz et al. corroborated previous findings that most patients in LIS are generally satisfied with their quality of life and do not wish for a hastened death. This study may have been subject to selection bias given the low response rate (76% of caregivers who were contacted did not respond or chose not to participate), but the results add to our understanding of despondency in LIS among patients with ALS. In response, Drs. Hermann and Aust comment on the importance of the caregiver and next of kin perspective. Although data from this study and others indicate caregivers frequently overestimate depressive symptoms in patients with LIS, other social factors and the caregiver-patient dynamic ought to be explored in future studies. It is well-established that for many patients with chronic neurologic conditions—even in patients in a locked-in state (LIS)—they may experience a good personal quality of life. In their retrospective cohort of 19 patients with amyotrophic lateral sclerosis (ALS) in LIS; Drs. Kuzma-Kozakiewicz et al. corroborated previous findings that most patients in LIS are generally satisfied with their quality of life and do not wish for a hastened death. This study may have been subject to selection bias given the low response rate (76% of caregivers who were contacted did not respond or chose not to participate), but the results add to our understanding of despondency in LIS among patients with ALS. In response, Drs. Hermann and Aust comment on the importance of the caregiver and next of kin perspective. Although data from this study and others indicate caregivers frequently overestimate depressive symptoms in patients with LIS, other social factors and the caregiver-patient dynamic ought to be explored in future studies.