Meaning in life in patients with amyotrophic lateral sclerosis

Abstract

The construct ‘meaning in life’ (MiL) has become increasingly important in palliative care. Several meaning-focused interventions have been developed recently. The aim of this study was to investigate MiL in patients with amyotrophic lateral sclerosis (ALS) and compare the findings with a representative sample of the German population. In the newly developed ‘Schedule for Meaning in Life Evaluation’ (SMiLE), respondents first list individual areas that provide meaning to their life before rating their current level of importance and satisfaction with each area. Overall indices of weighting (IoW, range 20–100), satisfaction (IoS, range 0–100), and weighted satisfaction (IoWS, range 0–100) are calculated. Results of our study showed that 46 ALS patients completed the SMiLE: the IoS was 74.7 ± 20.2, the IoW 88.1 ± 10.1, and the IoWS 76.3 ± 20.5. Satisfaction with MiL was negatively associated with disease duration and degree of functional impairment. After adjustment for age, sex, and marital status, the representative sample (n = 977) scored significantly higher in the IoS (82.8 ± 14.7) and the IoWS (83.3 ± 14.8). Compared to the general population, ALS patients list more meaning-relevant areas, are more likely to list partner, and less likely to list health. Thus, response shift seems to be a central coping mechanism in ALS patients. Regarding their major MiL areas, they shift their focus away from decreasing health status and towards supportive relationships.

Key words::

• Meaning in life
• Schedule for Meaning in Life Evaluation
• palliative care
• amyotrophic lateral sclerosis
• motor neuron disease
• coping

Acknowledgments

The authors are grateful to Helmut Küchenhoff, Ludwig-Maximilians University Munich for his advice and support. This study was supported by a research grant of the Friedrich Baur Foundation of the Medical Department, Ludwig-Maximilians University Munich, Germany.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.