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.
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This is an EU Joint Programme—Neurodegenerative Disease Research (JPND) project. The project is supported through the following organisations under the aegis of JPND—http://www.jpnd.eu e.g. Germany, Bundesministerium für Bildung und Forschung (BMBF, FKZ), Sweden, Vetenskaprådet Sverige, and Poland, Narodowe Centrum Badán i Rozwoju (NCBR). This work was supported by the Deutsche Forschungsgemeinschaft (DFG 336/13-2 und BI 195/54-2) and the (BMBF #01GQ0831 and BMBF #01GM1103A).
Conflicts of interest
The authors declare that they have no conflict of interest.
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Lulé, D., Nonnenmacher, S., Sorg, S. et al. Live and let die: existential decision processes in a fatal disease. J Neurol 261, 518–525 (2014). https://doi.org/10.1007/s00415-013-7229-z
- Palliative care
- Quality of life
- Amyotrophic lateral sclerosis