Death certificate listed boy's disability

As Rachel Browne's son Finlay left their home in Bathurst for the last time, he put one arm around his mum and another around his dad and told them he loved them.

It had started out as an ordinary day - a Friday in the first week of the September 2016 school holidays for 16-year-old Finlay.

Finlay lived with Down syndrome and autism, Ms Browne told the disability royal commission in Sydney on Wednesday.

But about lunchtime on this day, Finlay was pale and lying on the floor. He began vomiting and was in terrible pain, Ms Browne said, and there was blood in his faeces.

As Finlay left the house for what would be the last time, his mother and father were on either side of him.

"He put an arm around each of us and he looked up and said, I love you mum, I love you dad," Ms Browne told the hearing.

Finlay collapsed when the family arrived at Bathurst Hospital's emergency department.

A CT scan at about 7.30pm revealed Finlay had a fairly significant abdominal obstruction which would require surgical intervention.

Later that night, Finlay was taken into theatre and the next morning was flown to the Children's Hospital at Westmead where he underwent further surgery, the commission heard.

Finlay spent 71 days at the hospital, 65 of which were spent in the paediatric intensive care unit, and underwent 12 surgeries.

The majority of his small bowel was removed, and the family was told he would never eat or drink again.

As a result of his injuries his liver and kidneys were shutting down, Ms Browne said.

"He kept saying, Mum, I want to go home ... I wanted to get him home but it became evident that if he did recover he would have no quality of life," Ms Browne said.

After a final surgery, the decision was made to withdraw treatment.

Finlay was too unwell to be taken home to die, and in December 2016 he died with his family around him.

On Finlay's death certificate, which was shown to the commission, "trisomy 21", or Down syndrome, is listed in the cause of death and last illness section.

"(This) indicates that one of the causes of Finlay's death is in fact his Down syndrome," Ms Browne said.

Ms Browne would like to see policy changed to ensure it is not ordinary course to identify a person with intellectual disability, and their disability, on a death certificate if it was not part of the cause of the person's death.

Six months after his death, Ms Browne addressed Bathurst Hospital staff.

"I wanted clinicians to know what the ramifications of their inaction were to not only Fin, but to his family, to his friends," she said.

"That this young man had a life, a life well lived - he was just not a person with a disability, he was a human being."

Ms Browne has also lodged complaints with Bathurst Hospital and the NSW Healthcare Complaints Commission, the inquiry heard.

The commission indicated the matter should not go to formal investigation but have suggested engaging in a conciliation process.

Ms Browne has written to the NSW Health Minister and is currently awaiting a decision on whether a coronial inquest will be held into Finlay's death.

The commission continues.

© AAP 2020