How can the differences in the frequency of invasive ventilation within Germany and across Europe be explained?

There are reports from individual ALS centers regarding variations in the use of invasive ventilation, but no systematic surveys have yet been conducted. One of the main limitations in tracking regional tracheotomy rates is the lack of a national ALS registry. The available reports from ALS centers show significant variations in tracheotomy rates, ranging from less than 5% to as high as 15%.

The causes of these significant differences have not yet been systematically investigated. Overall, it can be assumed that several complex factors influence the decision to provide mechanical ventilation. The presence or absence of a ventilatory care infrastructure (intensive care teams or ventilator care communities) can lead to regional and local differences in ventilatory therapy.

Further differences can be found in the level of provision of assistive devices. Comprehensive provision of communication assistive devices (which enable internet use despite severe paralysis) as well as transfer and mobility aids (electric wheelchairs with integrated communication systems) are highly relevant to social participation and quality of life for patients on ventilator therapy. Without access to this complex array of assistive devices, it is more difficult to achieve a lifestyle that incorporates long-term ventilator therapy.

Further regional differences are likely to exist regarding access to palliative care. Certain regions of Germany have extensive experience with changing treatment goals and providing palliative care. For people on invasive ventilation, the presence of experienced palliative care structures makes it easier to discontinue existing ventilatory therapy, forgo the use of ventilators, and have palliative medications administered.

Simply being aware of the existing structures and experiences related to discontinuing ventilator therapy (if continuing treatment is no longer desired or appropriate) can influence the decision in favor of ventilator therapy.

There are even greater differences in the frequency of invasive ventilation in other countries. In Switzerland and Austria, invasive ventilation is used only in exceptional cases. Health insurance in those countries does not cover the costs of invasive ventilation. In the United Kingdom, too, invasive ventilation is used only in rare, exceptional cases. The same applies to Poland and other Eastern European countries. Limited information is available regarding the practice of tracheotomy in Russia, China, and other Asian countries.

In Japan alone, the use of invasive ventilation is known to be very common and is part of standard care. Up to 80% of all patients there receive invasive ventilation. However, in Japan, discontinuing ventilatory therapy is not possible due to the country’s medical-ethical values. The decision to initiate invasive mechanical ventilation is frequently made and, once ventilation has begun, is irreversible.

The frequency of mechanical ventilation in France, Italy, and the United States is comparable to that in Germany. Overall, despite the medical and social significance of this issue, few cross-national comparisons are available. There is a great need for research and public education on this topic.