6 Mar 2017

Deaths of intellectually disabled people "misreported"

From Nine To Noon, 9:08 am on 6 March 2017

The deaths of intellectually disabled people are being incorrectly recorded in Australia, research has found, and the same problem is likely to exist in New Zealand.

A team from the University of New South Wales found some people with Downs Syndrome who had died of pneumonia or heart failure would have Downs Syndrome written on their death certificate, though the condition did not directly cause their death.

death certificate

The cause of death of some disabled New Zealanders may be incorrectly recorded. Photo: 123RF

The researchers said 38 percent of deaths of intellectually disabled people were potentially preventable, but without a robust reporting framework it was difficult to work out how to bring that figure down.

Both the Australian researchers and IHC New Zealand - this country's biggest provider of care services for intellectually disabled people - are calling for a national reporting framework for deaths of the intellectually disabled.

Dr Martyn Matthews, a spokesperson for Idea Services, an arm of IHC, did a small scale study of 54 people who died in 2015.

"I found very similar kind of things - that people were often coded wrong, the intellectual disability was coded as the cause of death," he said.

"I've gone through actual death reports to look at the real cause, the underlying condition that's caused the death, and found high rates of respiratory conditions, aspiration pneumonia ... being one of the higher ones."

The author of the University of New South Wales' study, Professor Julian Trollor, said people with intellectual disabilities died prematurely, from causes similar to the general population.

The average age of death was 54 compared to 81 in the general population, the research found. Young and middle-aged people - those aged 20 to 44 - were four times more likely to die than people of that age group without an intellectual disability.

Prof Trollor said as well as being vulnerable due to the specific cause of the intellectual disability, people with intellectual disabilities may struggle to get good health care, including preventative health care.

"We find in Australia, that often preventative health aspects are being under-detected and under applied to this group.

"They continue a life-long pattern of high risk without the risk reduction strategies", he said.

One in three deaths was potentially avoidable by individualised care and treatment through existing primary health or hospital systems.