A Queensland father with motor neurone disease has been refused a tracheostomy he believes could extend his life, prompting his family to campaign for greater choice for Australian patients.
Aaron Reardon, from Logan in Brisbane’s south, asked Princess Alexandra Hospital to carry out the procedure as his condition began to affect his breathing. A tracheostomy creates an opening in the throat through which a person can breathe and receive ventilator support.
The hospital declined the request after clinicians considered it extensively, saying elective tracheostomy for permanent invasive ventilation in people with MND was not standard practice.
It said the treatment carried significant risks and there was no evidence it would improve a patient’s quality of life.
Family seeks change to MND treatment options
Mr Reardon’s wife, Rebecca, said the family wanted the Australian standard of care to change so that tracheostomy ventilation could be offered to suitable patients.
“It’s going to be too late for Aaron, so it definitely will be a legacy that he leaves that he’s tried to pave the path for other families not to go through what we’ve gone through,” she said.
The family has launched a Queensland Parliament e-petition calling for a framework that would give people with MND timely information about clinically appropriate treatments, including tracheostomy, and allow decisions to be made on an individual basis.
The proposed framework also calls for greater involvement of families and carers, transparent decision-making and access to an independent clinical review where appropriate. The petition is due to close on Saturday, 12 September.
Stacey Thorpe, chief executive of MND Queensland, said there appeared to be fewer options for people seeking to prolong their lives than for those considering voluntary assisted dying.
“There doesn’t seem to be the same opportunities for those people that are looking to extend their survival time in any way possible,” she said.
Andy Taylor, from Newmarket, underwent a tracheostomy in London after being diagnosed with MND. He said the procedure allowed mucus to be removed directly from his lungs, something he said could not be achieved in the same way with a mask.
“I can have a pretty normal life expectancy now,” Mr Taylor told 7NEWS.
MND can cause progressive paralysis and breathing difficulties. Supporters of tracheostomy ventilation say it can extend survival for some patients, while clinicians warn that the procedure can involve serious complications and a substantial long-term care burden.
