Depression and Quality of Life in Patients With Amyotrophic Lateral Sclerosis: Special Motivation

by Dr. rer. nat. Dorothée Lulé, Dipl. Psych. Sonja Häcker, Prof. Dr. med. Albert C. Ludolph, Prof. Dr. phil. Niels Birbaumer, PD Dr. rer. nat. Andrea Kübler in volume 23/2008

The published data confirm my own experiences, namely, that many people with the most severe physical impairments experience their lives as complete and often give them a satisfactory shape. During my time as a medical doctor, I have had the opportunity to learn much from my patients about what constitutes "real" life. However, there are also people with severe illness who are desperate—whom I failed often, and who taught me to be modest and live with the knowledge of my own powerlessness. Which patient belonged to which group depended less in the degree and type of their illness but on their social network, their attitudes to their own past and future, and personal values.

We know from palliative medicine and hospice work that comprehensive explanations about the disease and its progression, therapeutic options or the lack therefore, and holistic care can reduce fears and improve quality of life. The fact that lacking representativeness was mentioned and the numbers of participants were low makes me question some of the conclusions. The study subjects must have been unusually motivated (readiness to participate in the study, dependence on ALS outpatient clinics) patients, who benefited from the comprehensive care that is recommended in the conclusion. Unfortunately, no information was provided about age, social networks, or subjects' philosophy of life. I think it is not justified to conclude "a satisfactory quality of life even if they are severely physically impaired, [...]"is possible in any stage of ASL. This statement includes patients undergoing invasive ventilation. It also suggests that high quality information might increase patients' willingness to undergo therapeutic measures "including invasive ventilation". This is overstating the case, in view of the very small number of patients receiving invasive ventilation (n=4). Using the study results as instruments in the controversy about the validity or scope of advance directives (as has happened in the press) seems inappropriate. DOI: 10.3238/arztebl.2008.0825b

Dr. med. Jürgen Bickhardt
Uhlandstr. 19
85435 Erding, Germany