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A difficult case
Withdrawal of invasive ventilation in a patient with motor neurone disease and total locked-in syndrome
  1. Aoife Gleeson,
  2. Faye Johnson
  1. Department of Palliative Medicine, Aneurin Bevan University Health Board, Gwent, UK
  1. Correspondence to Dr Aoife Gleeson, Department of Palliative Medicine, Aneurin Bevan University Health Board, Ysbyty Ystrad Fawr, Ystrad Mynach, Gwent CF82 7EP, UK; aoife.gleeson{at}wales.nhs.uk

Abstract

Withdrawing invasive ventilation from a person with motor neurone disease who lacks the relevant mental capacity raises ethical issues such as the withdrawal of life-sustaining treatment and establishing best interests. There is little available information on providing optimal symptom management to these patients during the withdrawal process. We describe a man with motor neurone disease who also had total locked-in syndrome at the time of ventilation withdrawal, and we document the legal, ethical, emotional and symptom control issues encountered in supporting him.

  • MOTOR NEURON DISEASE
  • ESPIRATORY MEDICINE
  • QUALITY OF LIFE
  • NEUROMUSCULAR
  • EYE MOVEMENTS

https://doi.org/10.1136/practneurol-2016-001574

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    Footnotes

    • Contributors AG: conception or design of the work, data collection, critical revision of the article. AG and FJ: data analysis or interpretation, final approval of the version to be published. FJ: drafting the article.

    • Competing interests None declared.

    • Patient consent Consent was obtained from the wife of the deceased patient.

    • Provenance and peer review Not commissioned; externally peer reviewed. This paper was reviewed by Chris McDermott, Sheffield, UK.

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