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Withdrawal of tracheostomy ventilation in motor neurone disease: implementing advance directives
  1. Christopher J McDermott1,
  2. Christina Faull2
  1. 1 Sheffield Institute of Translational Neuroscience, University of Sheffield, Sheffield, UK
  2. 2 LOROS Hospice and University Hospitals of Leicester, Leicester, UK
  1. Correspondence to Professor Christopher J McDermott, Sheffield Institute of Translational Neuroscience, University of Sheffield, Sheffield S10 2HQ, UK; c.j.mcdermott{at}

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Making decisions about withdrawing life-sustaining treatment is something that a neurologist will most frequently be involved with in the intensive care unit setting, in people who have suffered a catastrophic brain injury. The ethical position is relatively clear when there is no prospect of meaningful recovery and, inevitably, the patient lacks awareness. Such decisions are made on the basis of futility and on a best-interest basis. The decision will be made in consultation with any appointed attorney for such decisions or following discussion with family members about any wishes the patient may have expressed and recorded, including any advance statements.

However, when patients themselves request the withdrawal (or refuse the continuation) of life-sustaining treatment, this raises significant challenges for doctors and others and is the subject of the General Medical Council (UK) and other guidance. In UK law, a patient with capacity for that decision has the right to refuse any medical intervention or treatment. This request by the patient may be made either directly or through an advance decision to refuse treatment, which becomes …

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  • Contributors All authors contributed to all aspects of the article.

  • Competing interests CJM was a coauthor on the APM guidelines and receives funding from the Motor Neurone Disease (MND) Association. CF led the work on the APM guidelines and receives funding from the MND Association.

  • Provenance and peer review Commissioned; internally peer reviewed. This paper was reviewd by Christopher J McDermott, Sheffield, UK.

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