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Live and let die: existential decision processes in a fatal disease
Dorothée Lulé1, Sonja Nonnenmacher, Sonja Sorg
1Department of Neurology, University of Ulm, Oberer Eselsberg 45, 89081, Ulm, Germany, dorothee.lule@uni-ulm.de.
Journal of Neurology
|January 14, 2014
Summary
Patients with Amyotrophic Lateral Sclerosis (ALS) often adapt decisions to prolong life as their condition progresses, with a decreasing desire for hastened death over time. Feeling like a burden, not quality of life, predicted vital treatment decisions.
Area of Science:
- Neurology
- Palliative Care
- Medical Ethics
Background:
- Decisions regarding life-prolonging or hastening treatments in fatal diseases like Amyotrophic Lateral Sclerosis (ALS) are complex and not fully understood.
- Patient attitudes and desires concerning end-of-life care can evolve during the course of a progressive, fatal illness.
Purpose of the Study:
- To investigate the decisions and determinants influencing life-prolonging choices and the desire for hastened death in patients with ALS.
- To longitudinally assess changes in these decisions and desires over one year, correlating them with quality of life, physical function, and psychosocial factors.
Main Methods:
- A prospective longitudinal study involving 93 ALS patients, with data collected three times over one year.
- Evaluation of determinants including quality of life (QoL), depression, feeling of being a burden, physical function, social support, and cognitive status.
Main Results:
- Over half of ALS patients maintained a positive attitude towards life-sustaining treatments with a low desire for hastened death.
- A significant decrease in the desire for hastened death was observed over one year, despite declining physical function.
- Feeling of being a burden emerged as a significant predictor for decisions against life-supporting treatments, whereas QoL, depression, and social support were not predictive.
Conclusions:
- ALS patients demonstrate flexible adaptation in life-prolonging decisions, with a declining desire to hasten death throughout disease progression.
- Feeling of being a burden is a critical factor in end-of-life decision-making for ALS patients and warrants greater attention in clinical counseling.
- Adaptation processes during fatal illness progression are crucial considerations in managing patient care and decisions.
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