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
• DOI: 10.1007/s00415-013-7068-y
• ISSN: 0340-5354; 1432-1459

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 to circumvent confounding effects of subsequent cognitive impairments. The ability of healthy persons (caregivers and age-matched healthy subjects) to anticipate patients’ quality of life (QoL), depression and vital decisions was determined in a cross-sectional approach. Eighty-nine ALS patients, 86 caregivers and 102 age-matched healthy subjects were asked to judge ALS patients’ QoL and depression and the patients' wish for hastened death. Patients judged their own, the caregivers judged that of the patient under their care, healthy subjects were asked to judge that of a virtual patient. Additionally, healthy persons were asked to judge their own QoL and depression. Patients reported a satisfactory well-being and a low wish for hastened death. Healthy persons rated the patients’ QoL significantly lower and the rate of depression significantly higher. The wish for hastened death was significantly lower in the patient group compared to what healthy subjects thought the patient would wish. The assessment by others was closely related to the persons’ own well-being. Significant differences were identified between caregiver’s perspectives and the patient’s own perception of their psychological well-being. Our data suggest that caregivers and the general public significantly underestimate the QoL of ALS patients. A positive affective state can indeed be preserved in a progressive, fatal disease.