Withdrawal of assisted ventilation
This information is for health and social care professionals and contains sensitive information about withdrawal of treatment at end of life.
You may want to see our information for people living with or affected by MND on:
Motor neurone disease (MND) is a progressive and terminal disease that attacks the motor neurones, or nerves, in the brain and spinal cord. Respiratory muscle weakness occurs eventually in everyone with MND.
When someone uses non-invasive ventilation (NIV), there will come a time when respiratory muscles fail to such an extent that ventilation is insufficient to alleviate symptoms or to correct blood gas abnormalities. In such situations, a discussion may take place about whether it is appropriate to continue using NIV.
Assisted ventilation (NIV or invasive ventilation via tracheostomy) may also be withdrawn according to wishes recorded in an Advance Decision to Refuse Treatment (ADRT). Withdrawal of assisted ventilation should be carefully planned so that symptoms can be managed to avoid distress or discomfort. Medication will be used for palliation of symptoms.
Many hospice doctors have experience in managing the process of withdrawing ventilation and may be called upon if needed for support and information. It has been recognised that withdrawal of ventilation can be very challenging for professionals.
Guidance for professionals
The Association for Palliative Medicine of Great Britain and Northern Ireland has published professional guidelines:
Other useful resources