Project: Strategies and interventions for vital decisions in Amyotrophic Lateral Sclerosis in different European countries

The overall aim of the project is to determine factors of decisions to prolong or shorten life in patients with a severe life -threatening disease in different European countries. Amyotrophic lateral sclerosis (ALS) will serve as a model disease in which body functions are lost in a short period of time. Loss of movements and speech are most prominent and death usually occurs within 3-5 years. The reasons for decisions to prolong (with for example, mechanical ventilation) or shorten life (with for example, euthanasia) are mostly unknown. ALS patients, caregivers and physicians will be interviewed in Germany, Sweden and Poland. Official records (legislative texts, health insurance standards and medical practice guidelines) will additionally be used. Individual factors (e.g. personal beliefs) will be distinguished from general factors (e.g. national healthcare policy). It will be a unique approach on how and why severely physically challenged patients decide the way they do and why decisions varies significantly be-tween different European countries. Data will impact on general discussions on living wills and end-of-life decision making policy. Best medical practice guidelines for clinicians and handbooks for patients will be provided. Workshops for expert and layman discussions will be organised.

Acronym NEEDS_in_ALS (Reference Number: JPND_HC-559-024)
Duration 01/01/2014 - 01/01/2017
Project Topic Neurodegenerative disease
Website visit project website
Network JPND
Call European research projects for the evaluation of health care policies, strategies and interventions for Neurodegenerative Diseases.

Project partner

Number Name Role Country
1 University of Ulm Coordinator Germany
2 University of Ulm Partner Germany
3 Umea University and Sunderby Hospital Luleå Partner Sweden
4 Medical University of Warsaw Partner Poland