Palliative sedation in amyotrophic lateral sclerosis: results of a nationwide survey among neurologists and palliative care practitioners in Germany

Abstract Background Palliative sedation has become widely accepted as a method to alleviate refractory symptoms in terminally ill patients. Controversies regarding this topic especially concern the use of palliative sedation for psychological symptoms, the use in patients who are not imminently dyin...

Full description

Bibliographic Details
Main Authors: Laura Salzmann, Bernd Alt-Epping, Alfred Simon
Format: Article
Language:English
Published: BMC 2022-04-01
Series:BMC Neurology
Subjects:
Online Access:https://doi.org/10.1186/s12883-022-02681-7
_version_ 1818263924897742848
author Laura Salzmann
Bernd Alt-Epping
Alfred Simon
author_facet Laura Salzmann
Bernd Alt-Epping
Alfred Simon
author_sort Laura Salzmann
collection DOAJ
description Abstract Background Palliative sedation has become widely accepted as a method to alleviate refractory symptoms in terminally ill patients. Controversies regarding this topic especially concern the use of palliative sedation for psychological symptoms, the use in patients who are not imminently dying and the simultaneous withdrawal of life-sustaining measures. Amyotrophic lateral sclerosis (ALS) is characterized by symptoms including muscle weakness, dysphagia, dysarthria, muscle spasms and progressive respiratory insufficiency. Due to these characteristic symptoms, palliative sedation might be considered to be necessary to alleviate refractory suffering in ALS patients. However, palliative sedation in ALS is only rarely discussed in current medical literature and guidelines. Methods A questionnaire survey was conducted among neurologists and palliative care practitioners in Germany. The participants were asked to evaluate the use of palliative sedation in different situations. Results Two hundred and ninety-six completed questionnaires were analyzed. The results suggest high levels of support for the use of palliative sedation in ALS patients. 42% of the participants stated that they had already used palliative sedation in the treatment of ALS patients. Acceptance of palliative sedation was higher in case of physical symptoms than in case of psychological symptoms. Refusal of artificial nutrition did not lead to a lower acceptance of palliative sedation. Doctors with specialist training in palliative care had already used palliative sedation in ALS patients more often and they were more likely to accept palliative sedation in different situations than the participants without a background in palliative care. Conclusion Our survey showed that palliative sedation in ALS is widely accepted by the attending doctors. In case of psychological symptoms, palliative sedation is looked at with more concern than in case of physical symptoms. The refusal of artificial nutrition does not result in a decreased acceptance of palliative sedation. Doctors with specialist training in palliative care are more likely to approve of palliative sedation in ALS.
first_indexed 2024-12-12T19:26:45Z
format Article
id doaj.art-cb2695fa40e44970af87b359baf34d04
institution Directory Open Access Journal
issn 1471-2377
language English
last_indexed 2024-12-12T19:26:45Z
publishDate 2022-04-01
publisher BMC
record_format Article
series BMC Neurology
spelling doaj.art-cb2695fa40e44970af87b359baf34d042022-12-22T00:14:30ZengBMCBMC Neurology1471-23772022-04-0122111010.1186/s12883-022-02681-7Palliative sedation in amyotrophic lateral sclerosis: results of a nationwide survey among neurologists and palliative care practitioners in GermanyLaura Salzmann0Bernd Alt-Epping1Alfred Simon2Department of Hematology, Oncology and Palliative MedicineDepartment of Palliative Medicine, University Hospital HeidelbergAcademy of Ethics in Medicine, University Medical Center GoettingenAbstract Background Palliative sedation has become widely accepted as a method to alleviate refractory symptoms in terminally ill patients. Controversies regarding this topic especially concern the use of palliative sedation for psychological symptoms, the use in patients who are not imminently dying and the simultaneous withdrawal of life-sustaining measures. Amyotrophic lateral sclerosis (ALS) is characterized by symptoms including muscle weakness, dysphagia, dysarthria, muscle spasms and progressive respiratory insufficiency. Due to these characteristic symptoms, palliative sedation might be considered to be necessary to alleviate refractory suffering in ALS patients. However, palliative sedation in ALS is only rarely discussed in current medical literature and guidelines. Methods A questionnaire survey was conducted among neurologists and palliative care practitioners in Germany. The participants were asked to evaluate the use of palliative sedation in different situations. Results Two hundred and ninety-six completed questionnaires were analyzed. The results suggest high levels of support for the use of palliative sedation in ALS patients. 42% of the participants stated that they had already used palliative sedation in the treatment of ALS patients. Acceptance of palliative sedation was higher in case of physical symptoms than in case of psychological symptoms. Refusal of artificial nutrition did not lead to a lower acceptance of palliative sedation. Doctors with specialist training in palliative care had already used palliative sedation in ALS patients more often and they were more likely to accept palliative sedation in different situations than the participants without a background in palliative care. Conclusion Our survey showed that palliative sedation in ALS is widely accepted by the attending doctors. In case of psychological symptoms, palliative sedation is looked at with more concern than in case of physical symptoms. The refusal of artificial nutrition does not result in a decreased acceptance of palliative sedation. Doctors with specialist training in palliative care are more likely to approve of palliative sedation in ALS.https://doi.org/10.1186/s12883-022-02681-7Palliative sedationAmyotrophic lateral sclerosis (ALS)Palliative care
spellingShingle Laura Salzmann
Bernd Alt-Epping
Alfred Simon
Palliative sedation in amyotrophic lateral sclerosis: results of a nationwide survey among neurologists and palliative care practitioners in Germany
BMC Neurology
Palliative sedation
Amyotrophic lateral sclerosis (ALS)
Palliative care
title Palliative sedation in amyotrophic lateral sclerosis: results of a nationwide survey among neurologists and palliative care practitioners in Germany
title_full Palliative sedation in amyotrophic lateral sclerosis: results of a nationwide survey among neurologists and palliative care practitioners in Germany
title_fullStr Palliative sedation in amyotrophic lateral sclerosis: results of a nationwide survey among neurologists and palliative care practitioners in Germany
title_full_unstemmed Palliative sedation in amyotrophic lateral sclerosis: results of a nationwide survey among neurologists and palliative care practitioners in Germany
title_short Palliative sedation in amyotrophic lateral sclerosis: results of a nationwide survey among neurologists and palliative care practitioners in Germany
title_sort palliative sedation in amyotrophic lateral sclerosis results of a nationwide survey among neurologists and palliative care practitioners in germany
topic Palliative sedation
Amyotrophic lateral sclerosis (ALS)
Palliative care
url https://doi.org/10.1186/s12883-022-02681-7
work_keys_str_mv AT laurasalzmann palliativesedationinamyotrophiclateralsclerosisresultsofanationwidesurveyamongneurologistsandpalliativecarepractitionersingermany
AT berndaltepping palliativesedationinamyotrophiclateralsclerosisresultsofanationwidesurveyamongneurologistsandpalliativecarepractitionersingermany
AT alfredsimon palliativesedationinamyotrophiclateralsclerosisresultsofanationwidesurveyamongneurologistsandpalliativecarepractitionersingermany