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

In line with our study,1 Hermann and Aust state that medical decision-making is a highly dynamic and complex process, which starts (long) before decisions are finally taken and for which well-being is only one determinant. In our study, family was a major determinant for QoL in line with previous studies,2,3 which facilitates patients' coping.4 Hermann and Aust point out correctly that we hereby presented patient's perspectives only, disregarding the well-being of the next of kin (n.b.: caregivers' QoL was in the range of patients'). Future work needs to address the question of how we can also secure the families' needs and how patients' possibly selfish behavior—e.g., in the context of frontal lobe damage—burden the patients' families. The foundation of liberal societies centers on the fact that one person's freedom ends where another's begins, but with patient-centered medicine, it is a general ethical question to be yielded, and it is not restricted to ALS. Some findings we presented might be specific for ALS with a predefined medical path of decision-making—such as for ventilation—but many aspects regarding the definition of quality of life are universal.