Advance care planning in motor neurone disease

Helping people with end of life planning is never easy. In those with motor neurone disease there are extra obstacles. It is a rare condition, and diagnosis can be difficult and delayed. The disease often progresses rapidly and is incurable, though not untreatable. Communication usually becomes more and more difficult, and some patients develop cognitive impairment.

The symptoms of neuromuscular respiratory failure can be relieved with non-invasive ventilatory support (NIV.) For those patients who use NIV it is essential to plan for the time they become ventilator dependent. This means that quite early in the course of the disease the doctor must introduce discussions on the use of gastrostomy feeding (PEG) and NIV, and must explain the risks, benefits and burdens of these interventions. My talk will outline the approach used in our combined clinic with the Victorian Respiratory Support Service.