… a study of the different factors that patients with ALS consider in deciding on assisted ventilation.
“(1) the meaning of the intervention— participants made a sharp distinction between non-invasive ventilation, which they viewed as a means to relieve symptoms of respiratory failure, and invasive ventilation, which they viewed as taking over their breathing and thereby saving their life when they otherwise would die, (2) the importance of context — including functional status, available supports, and financial implications, (3) the importance of values — with respect to communication, relationships, autonomy, life, and quality of life, (4) the effect of fears — particularly respiratory distress, chocking, running out of air, and the process of death itself, (5) the need for information—how use of assisted ventilation would impact daily life, how death from respiratory failure would occur, how caregivers and persons with ALS differ in their information needs and common misconceptions, and (6) adaptation to or acceptance of the intervention—a lengthy process that involved gradual familiarization with the equipment and its benefits.”