Professor Trollor and Dr Carmela Salomon provided the NDIS Commission with a report of Findings and a Summary of key findings for the scoping review.
Key findings about the people with disabilities who died include:
- The median age at death was substantially (20-36 years) lower than that of the general Australian population.
- The overwhelming majority of deaths within the scope of the project involved people with intellectual disability.
Key findings about risks and vulnerabilities include:
- There were high levels of co-occurring mental health concerns, including depression, self-harming behaviours and anxiety.
- The vast majority of people who died experienced multiple health problems in addition to their disability, including dental problems and epilepsy.
- A considerable proportion of people who died experienced issues that may have negatively affected their eating or drinking, including dental problems and swallowing problems related to Gastro Oesophageal Reflux Disease (GORD), medications and disease processes.
- A high number of in-scope deaths involved people who required communication and/or mobility support.
- There were high rates of polypharmacy, including psychotropic medications being commonly prescribed to people with disability who had died, often in the absence of a diagnosed mental illness.
- There were low levels of influenza and pneumococcal vaccinations.
- The date of the last comprehensive health assessment was unknown for a number of the people who died. In some cases, there was a lack of documented referral and follow-up for people with identified health risks such as diabetes, obesity and hypertension.
- Where reported, it appeared that over half the people who died were outside a healthy weight range. Weight and exercise status was unknown for a significant minority, suggesting that regular monitoring may not have been occurring.
Key findings about causes of death include:
- The majority of deaths were ‘unexpected’. ‘Unexpected’ deaths are defined differently for the purposes of the different state death review reports. (See Table 18 in the Findings of the scoping review).
- The vast majority of deaths were attributed to ‘natural’ causes (i.e. illness and disease).
- The four most common underlying causes of death were:
- Respiratory diseases (19%)
- Nervous system diseases (14%)
- Circulatory diseases (13%)
- Neoplasms (13%).
Key findings about respiratory deaths include:
- Respiratory disease was the major underlying cause of death for people with disability across reviewed reports.
- Aspiration pneumonia was the most common underlying cause of respiratory death for people with disability, accounting for just under half of all respiratory deaths.
- Identified areas of concern include:
- High rates of psychotropic prescriptions and polypharmacy, increasing risk of impaired swallowing function, sedation and hypersalivation.
- Lack of proactive and appropriate treatment of known risks such as dental problems, GORD, epilepsy, dysphagia and pica (eating non-food items).
- Delays in diagnosis and treatment of respiratory related illness.
- Lack of timely access to influenza and pneumococcal vaccines.
- Lack of comprehensive nutrition and swallowing assessments for at-risk groups.
- Safe mealtime guidelines not consistently being adhered to due to lack of staff knowledge and/or understaffing.
- Poor management of respiratory infection risk following surgery for falls and fractures.
- Poor access to respiratory specialists and other chronic disease management and other out-of-hospital programs.
Key findings about deaths related to choking include:
- Accidental choking was the leading external cause of death in the deaths reviewed.
- The vast majority of deaths caused by choking related to choking on food.
- Risk factors and areas of problematic practice for deaths related to choking were similar to those for respiratory deaths.
Key findings about deaths related to epilepsy, a nervous system disease, include:
- Epilepsy was the leading cause of more than a third of nervous system deaths. Epilepsy accounted for 5% of the total 901 deaths included in the scoping review.
- Identified areas of concern are:
- Some people who died appeared to have been administered sub-therapeutic dosages of anticonvulsant medication.
- It was not always clear whether people had access to a specialist neurologist for management and oversight of their epilepsy, including regular medication reviews, prior to death.
- Some cases of sub-optimal recording and charting of seizure activity were noted.
Key findings about deaths due to neoplasms and circulatory disease include:
- Malignant neoplasms of the digestive organs and malignant neoplasms of the trachea, bronchus and lungs were the most frequently reported neoplasm types.
- Ischaemic heart disease featured as the leading underlying cause of circulatory deaths.
- Identified areas of concern are:
- High prevalence of known risk factors including obesity, hypertension, diabetes, and low physical activity levels.
- Lack of care co-ordination between services to address identified risk factors.
- Poor management of lifestyle related risks including insufficient referral and contact with specialists to manage known risks.
- Lack of staff awareness of, or compliance with, healthy lifestyle policies.
- High rates of psychotropic prescriptions and polypharmacy and insufficient specialist review of medications.
The scoping review also identifies four overarching issues spanning jurisdictions and types of death:
- Across reports, a lack of proactive support for preventative health care measures, including recommended vaccinations, dental check-ups, comprehensive health examinations and allied health referrals was noted.
- Limited use of communication plans and other communication accommodations may have curtailed some clients’ ability to express emerging health concerns to staff. The one report that examined this issue in detail found 38% of those who required a communication plan did not have one in place.
- Findings across jurisdictions raise concerns about service providers failing to proactively manage emerging and chronic health risks. For example, identifying obesity but failing to refer the person for weight loss support.
- Staff were not always confident about, or aware of, best practice standards for responding to a medical emergency such as an epileptic seizure or a choking event. In some cases, staff had difficulty distinguishing between an urgent and a non-urgent health situation, thus leading to delays in treatment.