One third of physicians discuss exit strategies with patients with amyotrophic lateral sclerosis: Results from nationwide surveys among German and Polish neurologists

Author:

Barć Krzysztof1ORCID,Finsel Julia2,Helczyk Olga2,Baader Susanne2,Aho‐Özhan Helena2,Ludolph Albert C.23,Lulé Dorothée2,Kuźma‐Kozakiewicz Magdalena45

Affiliation:

1. Department of Neurology University Clinical Centre of Medical University of Warsaw Warsaw Poland

2. Department of Neurology University of Ulm Ulm Germany

3. German Centre of Neurodegenerative Diseases (DZNE) Ulm Germany

4. Department of Neurology Medical University of Warsaw Warsaw Poland

5. Neurodegenerative Diseases Research Group Medical University of Warsaw Warsaw Poland

Abstract

AbstractObjectiveThis paper examines neurologists’ approaches to exit strategies (ESs), such as euthanasia and physician‐assisted suicide, in patients with amyotrophic lateral sclerosis (PALS) in two European countries.MethodsIn a nationwide anonymous survey, we collected responses from 237 Polish and 228 German neurologists, focusing on their practices and beliefs about ESs, as well as their viewpoints on life‐sustaining measures (LSMs) (percutaneous endoscopic gastrostomy, non‐invasive, and invasive ventilation). To analyze the data, we employed statistical methods, including Mann–Whitney U, Kruskal–Wallis, chi‐square tests, Spearman's rank correlation, and multiple regression analysis.ResultsOne third of the neurologists initiated the discussion about ESs with PALS. Half were ready to have this conversation upon patient's request. Age, gender, religiousness, and nationality were closely associated with this approach. One in 9 neurologists received a request to terminate an LSM, whereas 1 in 10 to implement an ES. German neurologists and palliative care trainees acquired both demands more commonly. Neurologists quoted a low quality of life, decreased mood, and being a burden to the family/closest ones as primary reasons for a wish to hasten death among PALS. Although the majority expressed a willingness to terminate an LSM at a request of the patient, most opposed the legalization of euthanasia. Younger and less religious individuals were more likely to favor accepting euthanasia.ConclusionNeurologists vary significantly in their approaches to terminal care. Complex relationships exist among personal indices, shared beliefs, and current practices.

Funder

Bundesministerium für Bildung und Forschung

Publisher

Wiley

Subject

Behavioral Neuroscience

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