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
- EYE MOVEMENTS
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.
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.