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Euthanasia and physician-assisted suicide in amyotrophic lateral sclerosis: a prospective study

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Abstract

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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Acknowledgments

Supported by Prinses Beatrix Fonds. The study sponsor had no role in the recruitment of patients, in the management, analysis or interpretation of the data, or in the preparation, review or approval of the manuscript and the decision to submit the manuscript for publication.

Conflicts of interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

Ethical standard

This study was approved by the local ethics committee of University Medical Center Utrecht and was performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. All patients, or their legal representatives if the patient was unable to consent, signed the informed consent in the telestroke group prior to their inclusion in the study.

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Authors and Affiliations

  1. Department of Neurology, Rudolf Magnus Institute of Neuroscience, University Medical Center Utrecht, 3584 CX, Utrecht, The Netherlands

    Maud Maessen, Jan H. Veldink & Leonard H. van den Berg

  2. The Institute of Social and Preventive Medicine, University of Bern, Finkenhubelweg 11, 3012, Bern, Switzerland

    Maud Maessen

  3. Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, 1081 BT, Amsterdam, The Netherlands

    Bregje D. Onwuteaka-Philipsen & Gerrit van der Wal

  4. Department of Neurology, Donders Institute for Brain, Cognition, and Behaviour, Radboud University Nijmegen Medical Center, 6525 GA, Nijmegen, The Netherlands

    Helenius J. Schelhaas

  5. Department of Rehabilitation Medicine, Radboud University Nijmegen Medical Centre, 6525 GA, Nijmegen, The Netherlands

    Henk T. Hendricks

  6. Department of Rehabilitation Medicine, Academic Medical Centre, 1105 AZ, Amsterdam, The Netherlands

    Hepke F. Grupstra

Authors
  1. Maud Maessen
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  2. Jan H. Veldink
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  3. Bregje D. Onwuteaka-Philipsen
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  4. Henk T. Hendricks
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  5. Helenius J. Schelhaas
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  6. Hepke F. Grupstra
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  7. Gerrit van der Wal
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  8. Leonard H. van den Berg
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Corresponding author

Correspondence to Maud Maessen.

Additional information

M. Maessen and J. H. Veldink contributed equally to this work and analyses.

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Maessen, M., Veldink, J.H., Onwuteaka-Philipsen, B.D. et al. Euthanasia and physician-assisted suicide in amyotrophic lateral sclerosis: a prospective study. J Neurol 261, 1894–1901 (2014). https://doi.org/10.1007/s00415-014-7424-6

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  • DOI: https://doi.org/10.1007/s00415-014-7424-6

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