Can I do without mask ventilation?

Mask ventilation is used to reduce respiratory effort (dyspnea) and relieve the respiratory muscles when ALS has led to respiratory weakness and impaired respiratory function. Therefore, mask ventilation is an important treatment option that has been shown to be beneficial in studies and has proven effective in clinical practice.

Despite these advantages, mask ventilation can be associated with burdens and “side effects.” The balance between the expected benefits and the burdens of the therapy varies greatly from person to person. The result of this assessment may also be a decision to forgo mask ventilation (and any form of ventilatory therapy).

The decision to forgo mask ventilation may also be based on social considerations. Even the need for inpatient treatment to adjust mask ventilation settings can be a sufficient reason to forgo mask ventilation. Disturbance to the sleep of family members (who sleep in the same room) caused by the use of the equipment (handling the mask and noise) can also be a social reason for foregoing ventilator therapy.

Another fundamental consideration concerns life-prolongation through mask ventilation. Some of those affected do not wish to prolong their lives, as they consider the burdens of the illness to be unacceptable. Consequently, they consciously choose not to undergo mask ventilation in order to avoid prolonging their lives.

The withholding of life-prolonging measures, including mask ventilation, is considered a limitation of treatment that is legally permissible in Germany and viewed positively from a medical-ethical perspective. The decision to forgo mask ventilation—even if it shortens the patient’s remaining life—is an essential element of self-determination and patient autonomy.

Avoiding mask ventilation may be associated with increased respiratory effort. In this situation, palliative support with medications (particularly benzodiazepines and morphine) is an option to prevent or alleviate symptoms.