Advance directive

Amyotrophic lateral sclerosis is an incurable neurological disease. There is a steady progression that can at best be delayed with the currently available drugs. In the course of the disease, relevant swallowing and/or breathing disorders occur at some point, which is why every patient should think about the further course at an early stage. Sooner or later the question of artificial nutrition and, if necessary, non-invasive or even invasive home ventilation will arise.

However, not every patient wants this. Some patients opt for artificial nutrition up to invasive ventilation, some reject invasive ventilation. The patient's wishes are always decisive. In order to enable all patients, even in the advanced stage, to be treated in accordance with their wishes or values, the existence of a living will is very important or indispensable.

It's not about making a final commitment to something right at the beginning of the illness. However, one should familiarize oneself with the course of the disease and the necessary aids at an early stage in order to have enough time to develop an idea of what one wants for oneself and what not.

Living wills are not intended to relieve the doctor of responsibility, but to ensure that the patient's wishes are complied with - even in situations where a patient may no longer be able to express themselves. Conversely, this even obliges the doctor to act in accordance with the will expressed therein. Once a living will has been drawn up, it can be revoked at any time. Sometimes it is also necessary to adjust these more precisely due to changes in the course of the disease.

It is important in every living will that the patient makes a statement as precisely as possible about the situations in which and to what extent you want medical help. The more precisely this is formulated, the easier it is to comply with the respective request if necessary. We would like to point out that general statements such as "in the case of an incurable neurological disease..." should be avoided, since as an ALS patient you suffer by definition from an incurable neurological disease. Rather, a position should be taken on exactly which treatments a patient wants or does not want to have at all. This includes in particular statements on artificial nutrition and invasive home ventilation.