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Thinking about the end of life: a common issue for patients with Huntington’s disease

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Abstract

The aim of this study was to investigate the presence of thoughts or wishes for the end of life in patients with Huntington’s disease (HD) or identified gene carriers (further mentioned together as patients). A custom-made questionnaire, based on previous qualitative research, was sent out to 242 patients with HD and identified gene carriers. Presence of wishes was investigated and correlated to demographic and clinical characteristics. A total of 134 patients (55 %) returned the questionnaire. 101 respondents (75 %) reported to have some kind of thoughts or wishes for the end of life. For 15 respondents (11 %) these thoughts concerned care; 86 respondents (64 %) reported to have also thoughts about euthanasia or physician-assisted suicide (PAS). The presence of any thoughts about the end of life was significantly related to being familiar with HD in the family, but not related to any other demographic or clinical variable. Participants with thoughts specifically about euthanasia or PAS were of higher education and in earlier stages of the disease than participants without such thoughts. Thoughts or wishes for the end of life are present amongst patients with HD. These thoughts include euthanasia or PAS in a majority of the respondents. It is suggested that prudential addressing of these issues may enhance the doctor–patient relationship.

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Acknowledgments

We thank all patients for their participation in this study. There was no funding involved.

Ethical standards

The study protocol was approved by the Medical Ethics Committee of the Leiden University Medical Center (MEC LUMC registration number P11.035).

Conflicts of interest

None declared.

Author information

Authors and Affiliations

  1. Department of Neurology, Leiden University Medical Center (LUMC), P.O. Box 9600, 2300 RC, Leiden, The Netherlands

    Suzanne J. Booij, Johan Marinus & Raymund A. C. Roos

  2. Department of Medical Ethics and Health Law, LUMC, Leiden, The Netherlands

    Suzanne J. Booij & Dick P. Engberts

  3. Center for Human and Clinical Genetics, LUMC, Leiden, The Netherlands

    Aad Tibben

Authors
  1. Suzanne J. Booij
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  2. Aad Tibben
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  3. Dick P. Engberts
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  4. Johan Marinus
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  5. Raymund A. C. Roos
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Correspondence to Suzanne J. Booij.

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Booij, S.J., Tibben, A., Engberts, D.P. et al. Thinking about the end of life: a common issue for patients with Huntington’s disease. J Neurol 261, 2184–2191 (2014). https://doi.org/10.1007/s00415-014-7479-4

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  • DOI: https://doi.org/10.1007/s00415-014-7479-4

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