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.
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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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