Comparative Studies of ALS* Patients and Relatives Concernig End of Life Issues

Project summary

The objective of this study is to identify factors influencing patients’ and caregivers’ attitudes towards life-prolonging measures and (physician-) assisted suicide, and whether these factors and attitudes change during the course of the disease. A comparison of results will be possible between two German-speaking cultures with different legal background, since a similar study has been conducted at the University of Munich applying the same validated measures. Specifically the following factors will be analyzed by means of validated questionnaires / rating scales:

  • Demographic data such as age, gender, living situation, education, profession and religious confession;
  • Neurobehavioral Rating Scale (NRS) in order to assess patients’ and caregivers’ quality of life and loneliness and on the patient's side the fear of being a burden to others;
  • Questions about social relations and whether the relationship between patient and primary caregiver has changed due to the disease;
  • Schedule for Meaning in Life Evaluation (SMiLE); Hospital Anxiety and Depression Scale (HADS);
  • Questions regarding life-prolonging measures and hastening death;
  • Idler Index of Religiosity (IRR);

In order to assess spirituality and religiosity in more depth, patients and caregivers have been / are being interviewed in a semi-structured, open and tape-recorded interview. Caregivers will also be interviewed post-mortem to assess their coping strategies and grief.

*ALS = Amyotrophic lateral sclerosis