Presented by: Andrea Grindrod
Disadvantaged citizens who are dependent upon social welfare systems for their well-being become even more vulnerable when an unfamiliar system is introduced, such as health. In our study with one of the most disadvantaged populations in society, those with intellectual disability, we found the interface of collaboration between systems in providing care at end of life further increased the gaps. Unhelpful assumptions, such as most disability support staff viewing dying as a medical event, resulted in transfer to hospital for what was deemed better care. When community-based collaboration was attempted in a disability setting, each through the other was co-ordinating care resulting in no-one overseeing service provision. Palliative care and disability policies were often dissonant and further inhibited collaboration between services.
The recent White Paper produced by the European Association for Palliative Care provided 13 Consensus Norms on what is good end of life care for this population, but the question of how these standards of care might be systematically implemented remains. Cases of excellent care are apparent, but evidence suggests this occurs despite systems and structures, not because of them.
We have designed a systems-based implementation strategy by assigning the Consensus Norms to sectors, thereby increasing accountability and leadership, and reducing gaps in service provision. Submitted to the Victorian Government, work has commenced in Australia and findings will be shared in this presentation. The strategy offers a workable solution to improving end-of-life outcomes for people with intellectual disability. This systems-model might suggest strategies to be considered in other jurisdictions.