2019 Report: Scoping review of causes and contributors to deaths of people with disability in Australia

The research

In early 2019, to further inform our work in this area, we engaged Professor Julian Trollor, Chair, Intellectual Disability Mental Health, Faculty of Medicine, Department of Developmental Disability Neuropsychiatry at the University of New South Wales, to undertake a research project to obtain an Australia-wide perspective on the prevalence of, and factors contributing to, the deaths of people with disability.

Scoping review

Professor Trollor and his team were engaged to provide a synopsis of contemporary reviews of the deaths of people with disability who were in receipt of specialist disability supports and services, undertaken by Australian state or territory bodies such as disability commissioners or equivalent, and to establish a national baseline that aggregates the findings of the state and territory bodies.

The scoping review draws on recent reviews of deaths of people with disability conducted in New South Wales, Victoria and Queensland.

  • The New South Wales Ombudsman is responsible under legislation for reviewing and reporting on the deaths of people with disability in residential care or an assisted boarding house in New South Wales every two years. The reports published in 2015 and 2018 covered reviewable deaths from 2012 to 2017.
  • At the request of the relevant Victorian Minister, the Victorian Disability Services Commissioner commenced reviewing and reporting on the deaths of people receiving services from a disability service provider or a regulated disability service in Victoria. The first report, which was included in the scoping review, covered part of 2017-18.
  • The Parliament of Victoria’s Family and Community Development Committee published information in relation to some deaths of people with disability in its final report on the inquiry into abuse in disability services published in 2016.
  • The Office of the Public Advocate in Queensland reported in 2016 on its review of the deaths in care of adults with an intellectual disability in Queensland from 2009 to 2014.

In total, the scoping review includes reviews of the deaths of 901 people with disability, with 733 people in New South Wales, 95 people in Victoria and 73 people in Queensland.

Key findings

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.

Our actions in response to the research

The scoping review provides a strong evidence base which enables us, as the regulator of quality and safeguards for the NDIS, to take action to reduce identified risks to the lives of people with disability.

Increasing awareness and knowledge

We will take the following steps over the next six months, focused on increasing NDIS providers’ and workers’ awareness and knowledge in order to prevent deaths and serious injuries:

  • publish the research and promote it widely
  • issue a further Provider Alert to inform registered NDIS providers that we have published the research and our planned actions (we also issued a Provider Alert about the research projects on 18 December 2019)
  • develop and issue a number of Provider Practice Alerts on:
    • dysphagia and mealtime management plans including transition to hospital
    • antipsychotic medications that impact on swallowing and alertness during mealtimes
    • polypharmacy and the need for regular medical reviews
    • the need for regular comprehensive health care plans, including oral health screening, oral hygiene and access to dental health care
    • transitional support planning for hospital discharge
    • vaccination for the flu season
    • lifestyle risks and the importance of ensuring NDIS participants have access to information about lifestyle risks and are offered healthier choices
  • develop a guideline, in consultation with senior clinical practitioners, to provide best practice advice and quality indicators designed to reduce the use of chemical restraints and to promote the human rights and dignity of people with disability
  • work with relevant bodies to develop a Provider Practice Alert addressing how NDIS providers should enable NDIS participants with epilepsy to improve the management of their epilepsy.

Based on what we observe about deaths and serious injuries reported to us over time, we will develop a longer-term education strategy to continue to increase the awareness and capability of providers and workers in relation to these issues.

Increasing skills

We will develop targeted projects to:

  • build the capacity of direct support workers in mealtime management and understanding of dysphagia
  • build the capacity of providers in supporting people with communication impairment.

As part of our focus on incident management and prevention, we are seeking to educate NDIS providers on the benefits of proactively reviewing and learning from incidents in order to drive continuous improvements to their services and develop a culture of prevention. Over the next six months, we will develop materials to help NDIS providers to design and conduct practice reviews of incidents – including ‘near misses’ – so that they can:

  • prevent further incidents occurring
  • better equip workers to manage incidents when they do occur
  • influence improvements across other service delivery functions.

We will also develop an additional e-learning module targeted at workers who are involved in mealtime management to improve their understanding of dysphagia and risks in relation to respiratory conditions and aspiration.

Ensuring action and compliance

We will reinforce the importance of preventative action through our registration function by:

  • briefing our approved quality auditors on the issues and actions we identify in the Provider Practice Alerts listed above so that they can focus on these issues and registered NDIS providers’ incident management responses in conducting audits
  • developing an additional requirement in the Practice Standards and Quality Indicators to explicitly address quality and safety in mealtime supports.

We will ensure that action on these issues is supported by our compliance and enforcement work by:

  • developing a process to inform the registered NDIS provider’s approved quality auditor before they conduct a mid-term audit that there are particular practice standards we want them to look at in the audit, in circumstances where the registered NDIS provider has had recent reportable incidents involving deaths, or where there may be particular issues in relation to their implementation of health care actions or other issues that may increase the risk to participants of serious injury or death
  • prioritising for possible investigation and compliance action any NDIS providers where there are reports of preventable deaths, frequent hospitalisations or persistent health-related concerns
  • further developing our compliance activity to consider requiring NDIS providers to undertake practice reviews of or arising from incidents involving death or serious injury or ‘near misses’, where appropriate.

Finalising our data analytics and reporting framework

We are also finalising our data analytics and reporting framework across the NDIS Commission to help us mature our data collection systems and make best use of data for our quality and safeguarding activities, including our regulatory action.

The scoping review, together with the AIHW research, will enable us to establish a national baseline against which we can review the data we collect on the deaths of NDIS participants.

We will draw on the research to inform our data and reporting activities, and make necessary enhancements to our reporting system to better inform our regulatory action.

As our data holdings mature, we will work towards collecting, analysing and reporting the data in a manner that is also useful for other agencies and researchers to the extent that this is appropriate, given our functions and our obligations to protect information, including for reasons of privacy.

Working with other agencies and bodies

The issues identified in the research extend beyond the NDIS and the disability sector.

We are promoting the research to other relevant government agencies and non-government bodies, and we will continue to do this.

We will also approach other regulatory bodies and sector representatives to work with them to develop appropriate guidance, procedures and tools to assist in preventing avoidable deaths and reducing the risk of serious injury to people with disability.

Summary of Recommendations and our response

In addition to the Findings and a Summary of key findings, Professor Trollor and Dr Salomon also gave us a document setting out a Summary of recommendations. This includes practice improvement recommendations made in the New South Wales, Victorian and Queensland death review reports to reduce respiratory related deaths and deaths related to choking, improve epilepsy management and reduce lifestyle risks.

We have prepared a more detailed response to the Summary of Recommendations. We have focused on responding to the practice improvement recommendations taken from the New South Wales, Victorian and Queensland death review reports to reduce respiratory related deaths and deaths related to choking, improve epilepsy management and reduce lifestyle risks. Professor Trollor and Dr Salomon also make recommendations focusing on how a broad disability death review function should be performed. In the response, we discuss how the NDIS Commissioner’s functions and powers apply in relation to reviewing deaths.