Reader response: An observational study on quality of life and preferences to sustain life in locked-in state.

Abstract

The finding of a good subjective quality of life (QoL) by Kuzma-Kozakiewicz et al.1 in patients with ALS in locked-in state (LIS) confirms our previous results.2 Although we agree with the authors and editorial3 that it is now necessary to conduct longitudinal studies starting at earlier disease stages, we would even set their starting points far before patients decide over mechanical ventilation to understand how this decision is influenced by internal states such as subjective QoL in interaction with external conditions. However, we mainly stress the need to gain more distinctive insights into the psychologic adaptation process underlying such outcomes in future work, taking patients but also their next of kin (NOK) into account. In this regard, what have been the SEIQol domains noted as important by patients and their NOK and how was the NOK's own QoL, considering that NOK often do not adapt properly?2 Beyond the selection bias of such studies, it is time to look deeper into social network changes,4 socioeconomic/religious factors5—but also patient's secondary morbid gain—and the question to what extent it occurs at the expense of their beloved ones. Finally, how significant are such results concerning end-of-life decisions and presumed patients' will beyond ALS?