title: Live and let die: existential decision processes in a fatal disease.
abstract: Decisions and determinants of decisions to prolong or shorten life in the course of fatal diseases like ALS are poorly understood. Decisions and desire for hastened death of N = 93 ALS patients were investigated in a prospective longitudinal approach three times in the course of 1 year. Determinants of decisions were evaluated: quality of life (QoL), depression, feeling of being a burden, physical function, social support and cognitive status. More than half of patients had a positive attitude towards life-sustaining treatments and they had a low desire for hastened death. Of those with undecided or negative attitude, 10 % changed attitudes towards life-sustaining treatments in the course of 1 year. Patients' desire to hasten death was low and decreased significantly within 1 year despite physical function decline. Those with a high desire for hastened death decided against invasive therapeutic treatments. QoL, depression and social support were not predictors for vital decisions and remained stable. Feeling of being a burden was a predictor for decisions against life-supporting treatments. Throughout physical function loss, decisions to prolong life are flexibly adapted while desire to shorten life declines. QoL was stable and not a predictor for vital decisions, even though anticipated low QoL has been reported to be the reason to request euthanasia. In contrast, feeling of being a burden in decision making needs more attention in clinical counselling. Considering a patient's possible adaptation processes in the course of a fatal disease is necessary.
authors.affiliation: Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany, dorothee.lule@uni-ulm.de.
authors.forename: Dorothée
authors.initials: D
authors.lastname: Lulé
authors.forename: Sonja
authors.initials: S
authors.lastname: Nonnenmacher
authors.forename: Sonja
authors.initials: S
authors.lastname: Sorg
authors.forename: Johanna
authors.initials: J
authors.lastname: Heimrath
authors.forename: Martin
authors.initials: M
authors.lastname: Hautzinger
authors.forename: Thomas
authors.initials: T
authors.lastname: Meyer
authors.forename: Andrea
authors.initials: A
authors.lastname: Kübler
authors.forename: Niels
authors.initials: N
authors.lastname: Birbaumer
authors.forename: Albert C
authors.initials: AC
authors.lastname: Ludolph
mesh_terms: D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology*; D001293:Attitude to Death; D017281:Cost of Illness; D003657:Decision Making; D003863:Depression / Q000209:etiology / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology; D012944:Social Support