We were pleased to read ‘Requested withdrawal of mechanical ventilation in six patients with motor neuron disease’,1 and congratulate the authors. We wish to add to this discussion, including both neurology and palliative medicine perspectives from our clinical practice within the State-wide Progressive Neurological Disease Service (SPNDS). The SPNDS provides multidisciplinary care for approximately 350 patients with motor neuron disease (MND) across Victoria, Australia. It combines specialist neurology, palliative medicine, psychiatry and allied health clinicians and works closely with the Victorian Respiratory Support Service, Austin Health and local community palliative care services.

Approximately 5–10 patients with MND who attend the SPNDS request elective withdrawal of ventilation annually. Some deteriorate abruptly due to intercurrent illness and elect a palliative approach. They or their medical decision-maker may discuss elective withdrawal to avoid prolonging this phase. Guidance from advance care directives is particularly helpful. Others, a smaller number in our experience, make an informed decision to electively withdraw ventilation when they perceive it has become burdensome rather than beneficial. Most of our experience has been withdrawal of non-invasive ventilation (NIV) in the community and hospice setting.

The authors identified the importance of …