Disability documentation issues linked to deaths in residential care

Information that could affect the quality of care for people with disability living in residential care is being overlooked, ignored or isn’t being shared with providers – putting people at risk of death.

That’s one of the key findings from research, published in the Journal of Patient Safety, by the Australian Institute of Health Innovation, Macquarie University and UTS.

The researchers looked at 99 case studies extracted from eight New South Wales Ombudsmen reports of reviewable deaths.

Almost all (91 per cent) case studies contained information relating to documentation.

Just under half (47 per cent) linked failures in documentation to risk of death.

Lead author Dr Mary Dahm said important health information is being overlooked or lost in a system that does not communicate well across different services.

“This gap between what is known to be the best care and what is actually delivered endangers the lives of people with disability,” Dahm said.

Important documents, which include medication information and safe mealtime and behavioural plans, are rarely collated or linked in a way that helps the person, their carers, families or providers, the team said.

For example, the case studies showed that some people who died of aspiration pneumonia had safe foods recommended for them by a speech pathologist and written into a mealtime plan, but this was not adopted by the disability service provider.

They also showed a person could have an accident such as a choking but no incident report would be made to alert staff.

It also revealed that while strategies might be successfully implemented by care workers, when the person with disability enters hospital, staff may not locate, read or follow the recommendation from the home.

Jim Simpson, senior advocate with the Council for Intellectual Disability, said it’s “appalling and unacceptable” that the lives of people with disability are being put at risk by inadequate systems to document their healthcare needs. “Health agencies and the NDIS must act now to right this wrong,” Simpson said.

Dahm said there was a need for better education of the workforce in residential and long-term care, and health services.

She added the review also showed that when there is good communication and information shared between all of the service providers, and includes input from the person with the disability and their family, there will be a much better outcome for patients.

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