Multidisciplinary palliative care team experiences when caring for people with intellectual disability who are dying

Introduction: In the state of New South Wales (NSW) Australia the legislation requires that deaths of people with disability living in, or temporarily absent from, a government assisted accommodation service are reportable to the Coroner. Collated data from this reporting requirement offers information about where people with disability die, details of the death, and accommodation and health conditions at the time of death. Methods: Using a de-identified version of the collated database we analysed the reported deaths for 599 people with intellectual disability who had died during 2012 to 2016 across NSW. Results: The data set will be described in terms of key variables, including number of deaths per year, place of death, expectancy of death, and associated health risks. Significant relationships between place of death and policy compliance will also be described; for example compliance with coronial death reporting, and presence of health care plans. Implications: Recommendations about future data collection will be presented with a focus on policy compliance, data fidelity, and data collection methods. The findings will be discussed in light of Australia's current move from a state-based to national reporting system for out-of-home deaths.