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Live and let die: existential decision processes in a fatal disease

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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.

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Acknowledgments

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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Authors and Affiliations

  1. Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany

    Dorothée Lulé, Sonja Sorg, Johanna Heimrath & Albert C. Ludolph

  2. Institute of Medical Psychology and Behavioral Neurobiology, University of Tübingen, Tübingen, Germany

    Sonja Nonnenmacher & Niels Birbaumer

  3. Department of Psychology, Clinical Psychology and Psychotherapy, University of Tübingen, Tübingen, Germany

    Martin Hautzinger

  4. Department of Neurology, Charité-Universitätsmedizin Berlin, Berlin, Germany

    Thomas Meyer

  5. Department of Psychology, University of Würzburg, Würzburg, Germany

    Andrea Kübler

  6. Ospedale San Camillo, IRCCS, Venice, Italy

    Niels Birbaumer

Authors
  1. Dorothée Lulé
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  2. Sonja Nonnenmacher
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  3. Sonja Sorg
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  4. Johanna Heimrath
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  7. Andrea Kübler
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  9. Albert C. Ludolph
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Correspondence to Dorothée Lulé.

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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

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  • DOI: https://doi.org/10.1007/s00415-013-7229-z

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