High quality of life in spite of very severe disease

June 20, 2008

Patients with amyotrophic lateral sclerosis (ALS) experience an astonishingly high quality of life. This disease leads to progressive muscular weakness and the clinical course is always fatal. In spite of the continuously increasing loss of control, studies performed by Birbaumer et al. (Tübingen) and Ludolph et al. (Ulm) and reported in the current edition of Deutsches Ärzteblatt International have shown that many ALS patients are satisfied with their lives. (Dtsch Arztebl Int 2008; 105(23): 397-403)

http://www.aerzteblatt.de/v4/archiv/pdf.asp?id=60459

The authors showed that the quality of life of ALS patients does not depend on the severity of their physical restrictions. In contrast, it was found that patients who have to be given artificial respiration are more satisfied than patients for whom this is not necessary. Although an outside observer would have expected ALS patients to be depressed, as the disease is so serious, this was only the case for 10% of patients. This means that the proportion of depressive disorders is only slightly greater than in the overall population.

In view of the public discussion on euthanasia and assisted suicide, the authors think it essential that there should be a scientific investigation of the quality of life, as seen by the patient. The present studies show that the quality of life of patients with a fatal degenerative disease does not necessarily have to differ from that of healthy subjects.

In an accompanying editorial, Professor Hans Förstl points out the significance of these studies for the discussion of measures to shorten life. These could no longer be simply justified by saying that the patient had to be freed from his suffering. Förstl commented that the suffering is seen by the observer and not felt by the patient.
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Deutsches Aerzteblatt International

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