What do “limiting therapy” and “discontinuing treatment” mean?

Respiratory and nutritional support (PEG, mask ventilation, or invasive ventilation) can help prolong life in patients with ALS. However, some ALS patients find these life-prolonging measures burdensome or see them as conflicting with their personal values.

In this case, they may refuse to undergo ventilatory or nutritional therapy (withholding of treatment) and instead opt for palliative care. A different and special situation arises when patients have already begun PEG feeding or ventilator therapy and, as the disease progresses, decide to discontinue this care (discontinuation of treatment). From both a medical-ethical and legal perspective, the termination of life-sustaining measures is possible and permissible.

By discontinuing the use of the ventilator or the PEG tube, the original course of the illness (without life-prolonging measures) resumes, and the patient is allowed to die. The patient’s wish to refuse or discontinue ventilatory and nutritional therapy should be consistently and clearly ascertained and documented through direct doctor-patient communication. If the patient is no longer able to communicate, consultation takes place with the authorized representatives.