The use of noninvasive ventilation in the palliative care of ALS patients in the Hospital District of Southwest Finland 2004–2018

Amyotrophic lateral sclerosis (ALS) is a form of degenerative motor neuron disease of unknown aetiology. Noninvasive ventilation (NIV) can relieve the dyspnoea and thus increase life expectancy among ALS patients. The international guidelines recommend NIV as a palliative method during the course of the disease. In our clinical practice we have found that not all patients use the NIV despite its positive effect. The aim of this study was to clarify the use of NIV among ALS patients in the Hospital District of Southwest Finland. During the period from 2004 to 2018 we had altogether 213 ALS patients. We found that 45% (n = 79) of these patients used NIV during end-of-life care. These patients lived 7 months longer than those who did not use NIV. Adaptive difficulties, denial and frontotemporal dementia were the three most common reasons why the patients were not using the NIV. In conclusion it would be important to detect these ALS patients who do not use the NIV, because it is possible that they also experience dyspnoea even they do not use the NIV. In future it would be interesting to clarify the extent of use of NIV among ALS patients in Finland.