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 and ask questions of specialists in Neurology, Respiratory Medicine and Palliative Medicine about the management of NIV in MND and elective withdrawal of ventilation.
Dr Rowan Hearn
Dr Hearn is the Clinical Director Palliative Medicine at Calvary Health Care Bethlehem (CHCB), a subacute health service that provides specialist palliative care and is the home of the Statewide Progressive Neurological Disease Service (SPNDS). He supports the improvement of quality and safety in palliative care, having served as a member of the Governance Committee for the Palliative Care Clinical Network for the Department of Health, and Co-Chair of the Network’s Expert Working Group for Care of the Dying Person. Dr Hearn is active in research into Neuro Palliative Care and telehealth with further research interest in carer support. Prior to working at CHCB Dr Hearn spent 15 years working in the National Health Service (NHS) in London, during which time he completed a Masters in Medical Ethics and Law and was lead for clinical governance for his service.
Dr Susan Mathers
Dr Mathers is a neurologist at Monash Health, Adjunct Senior Lecturer, School of Clinical Sciences, Monash University and Clinical Director of Neurology at Calvary Health Care Bethlehem, Melbourne. Her clinical and research interests focus on the management of progressive neurological diseases and models of care. She is a member of the scientific committee of Motor Neurone Disease Research Australia, the Fight MND CURE Sub-Committee and a founding member of the Australian Motor Neurone Disease Registry and Victorian MND research tissue bank.
Associate Professor Mark Howard
A/Prof Howard has been director of the Victorian Respiratory Support Service and Victorian Weaning Unit at the Austin Hospital for over fifteen years, which provides state-wide services for domiciliary ventilation in Victoria. He completed his PhD and is Clinical Associate Professor at the University of Melbourne, and is Adjunct Associate Professor at Monash University and a board member for the Institute for Breathing and Sleep. His research has included development of new models of care for domiciliary ventilation, evaluation of diaphragm pacing and trials of different ventilation modes, with a current focus on telehealth and digital health innovations.