Decision making of amyotrophic lateral sclerosis patients on noninvasive ventilation to receive tracheostomy positive pressure ventilation

Abstract

Objectives: We retrospectively evaluated the decision-making process of amyotrophic lateral sclerosis (ALS) patients on noninvasive positive pressure ventilation (NPPV) concerning respiratory management with tracheostomy positive pressure ventilation (TPPV) in the future.

Patients and methods: We investigated the clinical characteristics of 29 consecutive ALS patients who had been introduced to NPPV during a 7-year period from September 2001 to August 2008 at our institution. We evaluated whether they had decided or not to undergo respiratory management with TPPV when NPPV was introduced and compared the clinical characteristics of the patients in these 2 groups.

Results: At the point of introduction of NPPV, 16 patients had made a definite decision on whether to receive TPPV for life, whereas 13 patients made their decision after its introduction. Finally, 12 patients (75.0%) of the former group and only 3 patients (23.1%) of the latter group refused to live with TPPV. Thus, among the patients who hesitated to decide whether to receive TPPV after the initiation of NPPV, a significantly higher number (P=0.002) ultimately transferred to TPPV.

Conclusion: In Japan, NPPV is an important factor promoting the decision to receive TPPV for patients who worried about the transition to TPPV. Further study is needed to realize what kind of an education actually influences on decision-making for TPPV and results in the happiness of ALS patients.

Keywords: Amyotrophic lateral sclerosis; Decision making; Noninvasive positive pressure ventilation; Respiratory management; Tracheostomy positive pressure ventilation.