2019 Volume 29 Issue 1 Pages 77-84
The process of decision making regarding respiratory care for patients with multiple system atrophy (MSA) should be considered as an ethical issue. MSA is an intractable disease which causes various neurological symptoms. Because of dysarthria and motor disturbance, patients become difficult to communicate with not only via speech but also by using communication devices. MSA also gives rise to respiratory failure which may provoke sudden death, as is frequently the case. In spite of insufficient evidence that tracheostomy positive pressure ventilation (TPPV) may improve respiratory disorders and bring relatively stable long-term survival, a few patients nonetheless undergo artificial ventilation treatment. Most of them were probably led to deciding not to use TPPV, that is, to die because their objective quality of living as evaluated by others might be deemed irreversible and intolerable decline. Moreover, the theory of personhood distinguishes persons who have moral standing and nonpersons- who may be left to die- and should be thought to affect our perception of the situation of MSA patients who are almost incapable of any communicative expression. However, even in these situations, there can remain a possibility of the patient retaining various criterion of person hood. This study was conducted via a series of interviews on three patients with MSA and their families. They revealed how they avoided being induced to give up respiratory care (especially TPPV) and determined- by themselves- to continue living using ventilators. Even with patients who are in the most progressive stages, care givers who have been communicated with by patients for a long time can read and realize patients' thoughts and intentions by the subtle movement of their upper limbs and facial expressions. Hence, they can effect a translation of sorts into concrete meanings in specific patient contexts. Latterly, this should be recognized as a kind of language-game (as developed by Wittgenstein in his Philosophical Investigations). Furthermore, patients' autonomy should be respected due to the ability to engage in elaborate communication means such as those described.
