When thinking about palliative care, you might think about looking after people who are very unwell at home, in a Residential Aged Care Facility, or in hospital. However, many people are surprised to know that palliative care is also needed in institutional settings such as prisons, which are often overlooked.
As the number of people in prison globally grows and the prison population ages, more and more people in prison need palliative care in a correctional environment. Despite this, it is difficult to gauge the quality and accessibility of palliative care in prisons because, unlike community-based care, there are very few transparent reporting mechanisms.
PhD candidate Isabelle Schaefer1 and supervisors, Professor Jane Phillips,1,2 Associate Professor Michelle DiGiacomo,1 Associate Professor Nicole Heneka,1,3 and Dr Stacey Panozzo4 are exploring how quality indicators used in community healthcare may be useful for palliative care in the prison setting.
In their new article, ‘The importance of developing palliative care quality indicators for the prison setting: why now, and next steps’, they note how lessons learned from development of community-based palliative care indicators, and those developed specifically for the prison environment can support the generation of prison-based palliative care indicators.
In May 2022, Isabelle prepared a policy brief, ‘Ensuring the quality of palliative care in Australia’s prisons’, for the Deeble Institute for Health Policy Research. The brief delves further into the shortfall in collection of health data in Australian prisons, how the regular collection of standardised national data will assist quality improvement initiatives, and how reporting will promote transparency and accountability.
Together, these works will support and inform the National Palliative Care in Prisons (PiP) Project, led by Professor Jane Phillips. The PiP Project, funded by the Commonwealth Department of Health and Aged Care, is working collaboratively with correctional facility healthcare providers and correctional services from each state and territory in Australia to explore how palliative care is currently provided in Australian prisons.
Using PiP project data, project partners will co-design a National Framework for the Provision of Palliative Care. This will support states and territories to provide quality, accessible palliative care to people in prison throughout Australia.
The PiP project team is seeking to interview family members of people who are, or were, in prison with palliative care needs. If you would like to contribute to this research by sharing your story, please email palcareprisons@uts.edu.au.
You can read more about the project via the Palliative Care in Prisons web page or sign up to the PiP project newsletter by email to palcareprisons@uts.edu.au.
1 University of Technology Sydney
2 Queensland University of Technology
3 University of Southern Queensland
4 University of Melbourne
Isabelle Schaefer has a background in medical science and a Master of Science in Medicine (Infection and Immunity). She is a Project Officer and PhD Candidate for the National Palliative Care in Prisons Project, University of Technology Sydney.