Quality of life in fatal disease: the flawed judgement of the social environment

• Published in: Journal of neurology Vol. 260; no. 11; pp. 2836 - 2843
• Main Authors: Lulé, Dorothée, Ehlich, Benedikt, Lang, Dirk, Sorg, Sonja, Heimrath, Johanna, Kübler, Andrea, Birbaumer, Niels, Ludolph, Albert C.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01.11.2013; Springer Nature B.V
• Subjects: Adult; Aged; Amyotrophic lateral sclerosis; Amyotrophic Lateral Sclerosis - complications; Amyotrophic Lateral Sclerosis - psychology; Attitude to Health; Caregivers; Caregivers - psychology; Case-Control Studies; Decision making; Depression - etiology; Depression - psychology; Disease; Ethics; Fatalities; Female; Health care; Humans; Judgment; Male; Medicine; Medicine & Public Health; Mental depression; Middle Aged; Neurology; Neuroradiology; Neurosciences; Original Communication; Patients; Quality of life; Quality of Life - psychology; Social Environment; Statistics, Nonparametric; Surveys and Questionnaires; Young Adult; Germany; Decisions; Depression; Amyotrophic lateral sclerosis; Fatal; Caregiver; Quality of life

Decisions to prolong or shorten life in fatal diseases like amyotrophic lateral sclerosis are strongly influenced by healthy individuals, such as caregivers and physicians. Furthermore, many believe that amyotrophic lateral sclerosis (ALS) patients should decide ahead of time on advanced directives...