Introduction: There is increasing debate on the issue of whether to facilitate the end-of-life decisions of severely disabled patients with diseases such as amyotrophic lateral sclerosis (ALS). Our two studies were intended to explore the emotional state and quality of life of patients with ALS.
Methods: Two studies were performed to investigate depression and the quality of life in ALS patients: one was a longitudinal study, the other a comparison of ALS patients to normal control subjects.
Results: These studies found no correlation between physical disability in ALS and either depression or the quality of life. The severity of depression was found to be inversely related to educational status. In ALS patients the quality of life was comparable with healthy controls.
Discussion: The rationale for not providing life-sustaining treatment to severely disabled patients is that a poor quality of life is expected after such treatment. Our studies have shown, however, that ALS patients can experience a satisfactory quality of life without depressive manifestations even if they are severely physically impaired, including in the terminal phase.
Keywords: amyotrophic lateral sclerosis; assisted suicide; depression; quality of life; respiratory insufficiency.