Motor Neurone Disease (MND) is a fatal neurodegenerative disease affecting some 2000 Australians. Average life expectancy from symptom onset is around 30 months.
Patients show different clinical phenotypes and rates of progression. Death usually results from ventilatory failure secondary to progressive respiratory muscle weakness and can be complicated by aspiration and respiratory infection. Offering respiratory support through non-invasive assisted ventilation (NIV) is considered best practice and can improve quality of life, symptoms and survival in selected patients. Patients usually begin using NIV overnight to improve sleep and daytime wellbeing. Over time, most will use it increasingly across the day, with some becoming NIV dependent.
Some patients who are dependent on NIV may ask that it be stopped. This is their right. It is not assisted suicide or assisted dying, it is withdrawal of medical treatment. Withdrawal of ventilation needs to be thought through and carefully discussed and planned to ensure that the patient is comfortable throughout the process and both staff and family/carers are supported.
This presentation gives the opportunity to hear from specialists in Neurology, Respiratory Medicine and Palliative Medicine about the management of NIV in MND and elective withdrawal of ventilation.