Care crisis for ventilator patients: Who cares for the most vulnerable?

Care crisis for ventilator patients: Who cares for the most vulnerable?

In Austria, people who rely on invasive ventilation face major challenges. According to that courier These patients need specialized nursing staff around the clock to avoid life-threatening situations such as suffocation. The official cost of ventilation is around 2,000 euros per day, but actual costs can often be double or triple that. The costs add up to up to one million euros per patient per year.

It is currently estimated that there are between 500 and 3,000 people in Austria with a tracheostomy who are ventilated via a cannula. However, doctors often advise against this measure because they see dying as the better option. A current study by the Berlin Charité gives hope: Patients with amyotrophic lateral sclerosis (ALS) live on average seven years longer if they are ventilated, instead of just three years, as would be the case without ventilation. There are even reports of those affected who are able to lead a normal working and traveling life despite their illness.

Care and situation in Vienna

In Vienna, four care companies have specialized in home care for respiratory patients and offer tailor-made services, with hourly rates varying between 60 and 100 euros. Nevertheless, there are repeated reports of inadequate care and the problematic discharge of patients, often without appropriate follow-up care. It happened that a patient was no longer picked up after being admitted to a hospital and others were “parked” in intensive care units for years.

The waiting times for places in professional homes can be up to two years, which makes the situation even more difficult for many of those affected. Around 100 patients currently live in such facilities, while hundreds of others are underserved and have to manage their own care. Particularly in Styria, patients can apply for a personal budget in order to organize their care themselves. This raises the question: Is it time to sustainably improve care regulations?

Ventilation challenges

PD Dr. med. habil. Martin Winterholler points out that the need for ventilation is determined in special clinical centers and the diagnosis requires comprehensive examinations such as pulmonary function tests and blood gas analysis. The original focus was on non-invasive ventilation, but invasive methods such as tracheostomy are unavoidable for many patients, even though they are often associated with paralysis of the voluntary muscles and unexpected deaths due to autonomic dysregulation, as described in the article by dgm.org is explained.

The situation of these patients is further complicated by bureaucratic hurdles, which Dragan V., an ALS patient, for example, struggles with. Rita Fussenegger plans to set up ventilation communities based on successful German models. It remains to be seen whether such initiatives can offer promising solutions. In addition, there is currently a secret working group that is working on regulations for care - but without the voices of patient representatives, which calls into question transparency and participation in such a sensitive matter.

The challenges are therefore great, and the question always arises as to how the needs of this vulnerable group of people can be met. A system that is tailored to the needs of patients could not only improve the quality of life of those affected, but also ensure their survival. The discussion about quality assurance and regulated patient allocation has only just begun, and it remains to be hoped that the responsible bodies recognize the urgency of these issues. In the meantime, society must pay attention and act to enable these people to live with dignity and safety.