Determinanten der Entscheidungen bei ALS-PatientInnen bezüglich lebensverlängernder und lebensverkürzender Maßnahmen
Böhm, Sarah Larissa Leonie
Background: Patients with amyotrophic lateral sclerosis are faced with different decisions in the course of the disease regarding life prolonging and life shortening treatments. Determinants of these decisions are rarely defined so far. The aim of this study was to identify possible determinants of the decision making process. Methods: A total of N=100 ALS-patients were interviewed with questionnaires concerning their decisions of life prolonging and life shortening treatments. Furthermore, possible determinants were acquired such as subjective feeling of autonomy, family bonding, subjective quality of life, depression, coping strategies, religiousness and cognition. Logistic and linear regressions were used for statistical analysis of the identification of determinants on decision making. Additionally, qualitative in-depth interviews (N=10) were performed and analysed by qualitative content analysis. Results: Family bonding was a strong determinant of decisions to prolong life. The majority (93 %) of the patients named the wishes of their caregivers as important for them and 79 % declared that the opinion of their caregivers influence their decisions. Similarly, increasing number of children of the patients showed a significant impact on the decisions to prolong life. Concurrently, the patients showed a strong need for autonomy which turned out to be a strong determinant of decisions to shorten life. Furthermore, degree of depression and religiousness had a significant influence on fatal decision making. Cognitive impairments however had no impact on decisions. Discussion: The results demonstrate a distinct discrepancy between the patients need for autonomy and the influence of the patient’s family bonding on their decisions. Patients that are more influenced by their need for autonomy decide towards life shortening treatments, whereas the patients that are influenced by their family ties tend to decide towards life prolonging treatments.
Subject HeadingsAngehöriger [GND]
Myatrophische Lateralsklerose [GND]
Amyotrophic lateral sclerosis; Psychology [MeSH]
Decision making [MeSH]
Life support care [MeSH]