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Mechanical ventilation withdrawal in motor neuron disease: an evaluation of practice
  1. Christina Faull1 and
  2. David Wenzel2
  1. 1LOROS Hospice, Leicester, UK
  2. 2University Hospitals of Leicester NHS Trust, Leicester, UK
  1. Correspondence to Dr Christina Faull, LOROS Hospice, Leicester LE3 9QE, UK; ChristinaFaull{at}


Objectives Clinicians report that withdrawal of mechanical ventilation in motor neuron disease is challenging. We report on the evaluation of the process and outcomes called for by the Association for Palliative Medicine of Great Britain and Ireland (APM) guidance.

Methods Excel analysis of a core data set, defined in the APM guidance, and thematic analysis of free-text comments, submitted by a UK clinician soon after withdrawal of mechanical ventilation in any care setting.

Results Thirty-seven professionals submitted 46 data sets from 4 patients with tracheostomy ventilation (TV) and 42 with non-invasive ventilation (NIV) in 35 months. These took place at home (43%), inpatient hospice (48%), hospital and care homes. Eighty-nine per cent received opioid and/or sedative medication at the initiation of withdrawal, majority of which were subcutaneous. A median of 2 doses (range 1–9) were used to manage symptoms before ventilation withdrawal. Subsequently 73% of patients required either none or one dose of medication. In addition to any background opioid, symptom management required a total parenteral morphine equivalent mean of 20.6 mg (range 0–60 mg) and midazolam mean of 25.8 mg (range 0–120 mg). The median time from first medication to removal of mechanical ventilation was 45 min. Patients with TV died within 30 min of withdrawal. The mode (14 of 42 patients) time to death after NIV withdrawal was 15 min, but ranged between <15 min and 54 hours.

Conclusions Individualised, proportionate, titrated opioid and sedative medications were used to provide good symptom management, and provided new insight into the substantial variability in what patients require to manage their symptoms and how long the process takes. Most patients required lower doses than in previous literature.

  • chronic conditions
  • drug administration
  • ethics
  • end of life care
  • neurological conditions

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  • Contributors CF with others designed the study. CF and DW collated and analysed the data and drafted the paper.

  • Funding Some funding for CF’s time was provided by the Motor Neurone Disease Association (MNDA), and other funding was provided by the employing organisation LOROS Hospice, Leicester.

  • Disclaimer The funders had no role in the study design, analysis or interpretation of the data.

  • Competing interests CF has received other competitive grant funding from the Motor Neurone Disease Association.

  • Patient consent for publication Not required.

  • Ethics approval This was an anonymised evaluation of care and did not require research ethics approval.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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