BY KAI SINOR

Last week the National Disability Insurance Scheme Quality and Safeguards Commission (the Commission) published the findings of research into the causes and contributors of deaths to people with disability.

The report details the findings from the review of nine-hundred and one reported deaths of people with disability across New South Wales, Queensland and Victoria. This article summaries key issues in the report’s findings, all of which will form part of the Commission’s regulatory priorities.

What did the report find?

Of the nine-hundred and one deaths reviewed within the scope of the report, the four most common causes of death were:

  • Respiratory disease (19%) of which the leading underlying causes of death were pneumonitis caused by solid and liquid irritants, and pneumonia.
  • Circulatory diseases (13%) of which ischaemic heart disease was the leading underlying cause of death.
  • Neoplasms (abnormal growths) (13%) whose most frequent types included malignant neoplasms of the digestive organs and malignant (cancerous) neoplasms of the trachea, bronchus and lungs.
  • Nervous system diseases (14%) of which epilepsy was the leading cause of death (5% of deaths overall).

Unnatural or external causes of death accounted for 5-8% of all deaths investigated, the vast majority of which related to choking (choking was associated with 34 of 901 deaths).  Of the twenty-nine reported deaths by choking:

  • 83% related to choking on food;
  • 14% related to choking on vomit; and
  • One person (3%) choked on a foreign object (latex glove).

The review focussed on deaths of people with disability living in supported disability accommodation or receiving services from specialist disability services providers.  It did not sample deaths of all people with disability.  However, the overwhelming majority of in-scope deaths involved people with intellectual disability.

The review identified that respiratory deaths involved high rates of psychotropic medications and polypharmacy, including where there was no diagnosed mental health condition.  This reflects the common (and troubling) practice of using medications to control behaviours of concern (“chemical restraint”). Data collected by agencies in New South Wales showed that, for people receiving disability services, respiratory disease was also the largest contributory cause of death.  Risk factors for the other leading causes of death are discussed below.

The regulatory response

The Commission will develop an additional NDIS Practice Standard that specifically addresses quality and safety in mealtime supports.  Once in place, the standard will apply (to providers who provide an applicable category of supports) from the time that their registration is renewed.

In the coming months, providers delivering certain categories of supports (see below) will receive “Provider Practice Alerts” outlining issues of concern and potential risks to quality and safety.  The NDIS Commission will also develop projects and training targeted at workers involved in mealtime management to build their capacity in key risk areas and understanding of dysphagia (including a new e-learning module), and will develop a guideline on reducing the use of chemical restraints.

Increased focus on incident management and reporting

The NDIS Commission is likely to increase its focus on incident management systems and incident reporting practices. Issues with incident management systems that the Commission is generally concerned with are:

  • whether incident notifications are lodged appropriately (timely and with adequate information);
  • how the provider has responded to incidents (including how impacted persons are supported); and
  • whether workers involved in incidents were appropriately trained (for delivery of the supports or in responding to the incident).

Incidents that involve the use of chemical restraint (i.e. psychotropic medication or polypharmacy), a failure to coordinate or follow up with primary healthcare services or poor client communication (i.e. poor progress noting or limited use of communication plans and communication accommodations) are indicators of risk that will be of particular concern to the Commission.

Incident management systems will continue to be a focus at audit; the NDIS Commission has stated it will put in place a process to inform the auditors if there is a provider who has had recent reportable deaths (or where there are other indicators of risk relevant to the leading causes of death), and will direct the auditor to look at particular Practice Standards.

Providers that report deaths which are preventable, or who are required to frequently hospitalise clients (or where there are reports of persistent health-related concerns) will be subject to closer scrutiny and may, where appropriate, be prioritised for compliance action or investigation.  Providers may also receive directions from the NDIS Commission to undertake practice reviews of incidents involving (or arising from) deaths, serious injuries or ‘near misses’.

Registration categories that involve risk factors

Providers registered in the following groups are most likely to involve the provision of supports that are associated with the leading causes of death or which involve identified risk factors:

  • Class 4: high intensity daily personal activities
  • Class 7: assistance with daily personal activities
  • Class 10: specialist positive behaviour support
  • Class 14: community nursing care
  • Class 15: assistance with daily life tasks in a group or shared living arrangement
  • Class 17: development of daily living and life skills
  • Class 18: early intervention supports for early childhood
  • Class 25: participation in community, social and civic activities
  • Class 28: therapeutic supports (speech pathology)
  • Class 33: specialised support coordination
  • Class 34: specialised supported employment
  • Class 37: group- and centre-based activities

Education, capacity building and other projects implemented by the Commission following the review will be targeted at providers in these registration categories.

What were the contributing risk factors?

Respiratory disease

  • 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, PICA.
  • 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 under-staffing.
  • 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.

The report found that risk factors and areas of problematic practice for choking were similar to those for respiratory deaths.

Circulatory disease and neoplasms

  • High presence of known risk factors, including obesity, hypertension, diabetes, low physical activity levels, hypertension.
  • Lack of coordination 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.

Nervous system diseases

  • It was not always clear whether people had access to a specialist neurologist for the management and oversight of their epilepsy (including regular medication reviews) prior to death.
  • Some people who died appeared to have been administered sub-therapeutic dosages of anticonvulsant medication.
  • Some cases of sub-optimal recording and charting of seizure activity were noted.

Key themes

Physical health problems

The vast majority of people who died experienced multiple physical health problems in addition to their disability. These included dental problems (51%- 83% of people) and epilepsy (28%- 49% of people). Constipation, urinary incontinence and Gastro Oesophageal Reflux Disease (GORD) were also common.

Swallowing and mealtime support

Where such data was collected, it was noted that a considerable proportion of people who died experienced issues that may have impacted how and/or what they ate. For example:

  • missing teeth and other dental problems; and
  • swallowing problems related to GORD, medications and disease processes.

Mobility & communication

A high number of in-scope deaths involved people who required communication and/or mobility support. The number of people requiring a communication plan who actually had one in place was either unknown or not reported in most samples.

Medications

The review noted high rates of polypharmacy. Amongst the deaths reported in the review, many involved people with disability who been administered psychotropic medications. Such medication was often prescribed in the absence of a diagnosed mental illness.

Vaccinations

Across samples taken of deaths in each jurisdiction, 14% to 48% of people had not received an influenza vaccination in the twelve months before their death. Where reported, it appeared that between 25% and 83% had not received a pneumococcal vaccination in the last twelve months.

 

Accessing preventive health care measures

Across reports, the review noted a lack of proactive support for preventative health care measures, including a lack of recommended vaccinations, dental check ups, comprehensive health examinations and allied health referrals.

Managing emerging and chronic risks

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.

Supporting client communication

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

 

Responding to medical emergencies

Staff were not always confident, 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.

 

Limits of the study

Differences between how agencies investigate and report deaths meant that there was no consistent method across reports for analysing cause of death based on demographic- or disability-related indicators.  There were also differences in how each jurisdiction defines a “reportable” death under coroner legislation and in the time range of deaths sampled (seven months to nine years).

For more information, contact Michael Pagsanjan (info@mpslaw.com.au).