Guideline development on motor neuron disease (MND) in Germany is driven mainly by the German Neurological Society and German Association for Muscle Diseases. Greater research funding, a national strategy, and programs on MND are still lacking. General and specialized palliative care home services, palliative care units, or hospice care are accessible for all MND patients in Germany. Assistive technologies can be ordered by treating physicians in experienced centers. In symptomatic patients, qualified neurologists can request genetic testing of about five to ten genes per year. Withholding or withdrawing mechanical ventilation in end-of-life situations of MND can be described as “passive help in dying,” and the German Ethics Council recommends use of the term “letting die.” Palliative sedation therapy is allowed in Germany, euthanasia is prohibited.
