Euthanasia and physician-assisted suicide in amyotrophic lateral sclerosis: a prospective study
Open accessAbstract
The objective of this study is to determine if quality of care, symptoms of depression, disease characteristics and quality of life of patients with amyotrophic lateral sclerosis (ALS) are related to requesting euthanasia or physician-assisted suicide (EAS) and dying due to EAS. Therefore, 102 ALS patients filled out structured questionnaires every 3 months until death and the results were correlated with EAS. Thirty-one percent of the patients requested EAS, 69% of whom eventually died as a result of EAS (22% of all patients). Ten percent died during continuous deep sedation; only one of them had explicitly requested death to be hastened. Of the patients who requested EAS, 86% considered the health care to be good or excellent, 16% felt depressed, 45% experienced loss of dignity and 42% feared choking. These percentages do not differ from the number of patients who did not explicitly request EAS. The frequency of consultations of professional caregivers and availability of appliances was similar in both groups. Our findings do not support continuous deep sedation being used as a substitute for EAS. In this prospective study, no evidence was found for a relation between EAS and the quality and quantity of care received, quality of life and symptoms of depression in patients with ALS. Our study does not support the notion that unmet palliative care needs are related to EAS.
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Data on psychedelic-assisted therapy for psycho-existential distress are promising.
“Interestingly, data on psychedelicassisted therapy to improve psycho-existential distress are promising, suggesting ways Michael's experience with psilocybin mushrooms might have been further integrated into his existential therapy.10”
From “When Will All of This End?”: A 65-Year-Old Man With Amyotrophic Lateral Sclerosis and Psychiatric Distress (2023) · cites this paper as [10]
The Discussion (page unavailable) mentions existential suffering in patients with ALS, and the Symptoms of depression and quality of life section assesses depression and quality of life. Neither addresses whether psychedelic-assisted therapy or psilocybin improves psycho-existential distress; searches for those terms found no relevant passage in our copy. (LLM, conf=0.76)
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References 33 · Cited by 61
Research works printed but not linked: 2
- Brooks BR (1994) El Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis. Sub- committee on Motor Neuron Diseases/Amyotrophic Lateral Sclerosis of the World Federation of Neurology Research Group on Neuromuscular Diseases and the El Escorial ''Clinical limits of amyotrophic lateral sclerosis'' workshop contributors. J Neurol Sci 124(Suppl):96-107
- Onwuteaka-Philipsen BD, Brinkman-Stoppelenburg A, Penning C, de Jong-Krul GJ, van Delden JJ, van der Heide A (2012) Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey. Lancet. doi:10.1016/S0140- 6736(12)61034-4 · DOI
- Authors
- Maessen, M., Veldink, J. H., Onwuteaka-Philipsen, B. D., Hendricks, H. T., Schelhaas, H. J., Grupstra, H. F., van der Wal, G., & van den Berg, L. H.
- Affiliations
- University of Bern (CH)
- University Medical Center Utrecht (NL)
- Amsterdam Public Health (NL)
- Radboud University Medical Center (NL)
- Radboud University Nijmegen (NL)
- Amsterdam UMC Location University of Amsterdam (NL)
- Corresponding author
- Maessen, Maud
- Venue
- Journal of Neurology
- Published
- 2014-07-15
- Volume
- 261
- Issue
- 10
- Pages
- 1894-1901
- ISSN
- 0012-1037 (ISSN-L)
- 0340-5354
- 1432-1459
- OpenAlex
- W2091351745
- Cited by
- 61
- References
- 33
- Citations by year
- 2026: 2 · 2025: 3 · 2024: 12 · 2023: 9 · 2022: 1 · 2021: 10 · 2020: 1 · 2019: 5 · 2018: 2 · 2017: 1 · 2016: 9 · 2015: 5 · 2014: 1
- FWCI
- 4.91
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Journal of Neurology (publishedVersion)
- PubMed (publishedVersion)
- Amsterdam UMC (VU Amsterdam) - Institutional Repository (publishedVersion)
- reroDoc Digital Library (submittedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion)
- BORIS (University Library Bern) (submittedVersion, cc-by)
- Pure Amsterdam UMC (submittedVersion)
- Open Access CRIS of the University of Bern
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Keywords
- amyotrophic lateral sclerosis, euthanasia, physician-assisted suicide, quality of life, depression, palliative care, continuous deep sedation, end-of-life care, patient dignity, unmet palliative care needs, symptom burden
- MeSH terms
- Adult, Aged, Aged, 80 and over, Amyotrophic Lateral Sclerosis, Decision Making, Depression, Euthanasia, Female, Follow-Up Studies, Humans, Male, Middle Aged, Palliative Care, Prospective Studies, Quality of Life, Surveys and Questionnaires, Suicide, Assisted
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