What does a change in treatment goals mean?

In ALS, there are two main treatment goals: prolonging life (primarily through nutritional and ventilatory support) and alleviating symptoms (regardless of whether this treatment can prolong life). The majority of patients aim to achieve both treatment goals: symptom relief and prolonging life. Another group of ALS patients prioritizes symptom control as their treatment goal and consciously chooses not to pursue the goal of prolonging life.

This allows us to distinguish, in simplified terms, between two forms of treatment: maximal therapy (aimed at symptom control and prolonging life) and symptomatic and palliative therapy (aimed at symptom control without the goal of prolonging life). Treatment goals are developed, discussed, and documented during the doctor-patient dialogue. As the disease progresses, there may be a change in attitude toward life-prolonging measures, which is referred to as a “change in treatment goals.”

A typical scenario is one in which a patient is receiving maximal therapy but, as the disease progresses (with increasing physical strain and symptoms), chooses not to undergo life-prolonging measures. In this scenario, the treatment goal is shifted from maximal therapy to symptomatic and palliative care.

A change in treatment goals is also possible in the opposite direction: Some patients initially cannot imagine undergoing life-prolonging measures (including nutritional and respiratory therapy) and limit their treatment to symptomatic care (without life-prolonging measures). As the disease progresses, patients may develop a different perspective on their own condition and become increasingly open to life-prolonging measures (particularly respiratory therapy). In this scenario, there is a change in treatment goals (from the original) symptomatic and palliative care in favor of maximal therapy.

The treatment goal may be adjusted at any time during the course of the illness. The question of the appropriate personal treatment goal should be discussed, reviewed, and documented through dialogue between the doctor and the patient throughout the course of the illness.