DÄ internationalArchive47/2008Depression and Quality of Life in Patients With Amyotrophic Lateral Sclerosis: Inappropriate Simplification

Correspondence

Depression and Quality of Life in Patients With Amyotrophic Lateral Sclerosis: Inappropriate Simplification

Dtsch Arztebl Int 2008; 105(47): 825. DOI: 10.3238/arztebl.2008.0825a

Meyer, T

LNSLNS The authors draw a rather surprising conclusion in saying that "in ALS patients the quality of life was comparable with healthy controls." This statement directly contradicts my daily clinical experience with ALS patients. These patients are usually stunned and in despair that their life plans will remain forever unachievable, and that is before the prognosis of a fatal illness comes into play. During the subsequent disease progression patients and their families also experience sadness and grief, fear, and exhaustion. The fact that a "normal" quality of life was observed in the study provokes the question whether the available neuropsychological methods are appropriate for describe the main implications of ALS.

The study reported in the article has numerous methodological limitations. The number of subjects is low, at 39. Only four patients received invasive ventilation. Only two patients were in a state of total immobilization.

The study captured mainly patients half way through the course of their illness. The authors' conclusion of a sufficient quality of life in all stages of ALS is therefore not justified.

The assessment of the study results seems too wideranging. The authors conclude that in a scenario of "excellent palliative care", the patients' desire to stop treatment loses relevance. Our own studies of ventilation treatment contradict this abstract and simplified interpretation (1). A patient's desire to stop treatment can arise even in a scenario of optimal medical or social care structures. It is associated with the subjective experience of the severe loss of autonomy and may be caused by concrete biographical circumstances. A reasoned decision on the part of the patient to stop treatment should not be put into question or stigmatized as a result of overinterpreting the results of the study under discussion.
DOI: 10.3238/arztebl.20080825a

Prof. Dr. med. Thomas Meyer
Charité – Universitätsmedizin Berlin
Neurologische Klinik
Ambulanz für ALS und andere Motoneuronenerkrankungen
Augustenburger Platz 1
13353 Berlin, Germany
thomas.meyer@charite.de
1.
Meyer T, Dullinger JS, Münch C et al.: Elektive Beendigung der Beatmungstherapie bei der Amyotrophen Lateralsklerose. Nervenarzt 2008; 79: 684–90. MEDLINE
1. Meyer T, Dullinger JS, Münch C et al.: Elektive Beendigung der Beatmungstherapie bei der Amyotrophen Lateralsklerose. Nervenarzt 2008; 79: 684–90. MEDLINE