Improving palliative care for more South Australians

“Australia has an excellent palliative care system, being deemed second only to the UK; however, we know palliative care in Australia is underfunded,” says the University of Adelaide’s Associate Professor Jaklin Eliott from the School of Public Health, who is leading the study.

“We want to better understand how several underserved population groups access and receive care, the barriers and enablers to their care, and whether they experience gaps in care provision.”

The research project, titled My Story, Our Journey, is especially interested in the experience of participants with culturally and linguistically diverse backgrounds, those impacted by low-socioeconomic circumstances, and rural residents.

“We know that palliative care services are less accessible for people with these backgrounds, so we hope individuals who identify with one or more of those backgrounds sign up to this project,” says Dr Georgia Rowley, from the University’s School of Public Health.

“Through their participation, we can better learn how to ensure that they get the care they need, where and when they need it.”

The study, which is funded by The Hospital Research Foundation Group – Palliative Care and also involves researchers from Flinders University, and University of South Australia, will capture behaviours, experiences, and key moments over time that shape how and why people living with a life-limiting illness who need assistance with their care needs, and their chosen carers, make decisions about care at the end-of-life.

Researchers will interview participants every three months in order to gain insight into their behaviours and experiences.

My Story, Our Journey is currently underway, with some findings already surprising the researchers.

“We’re heartened by the enthusiasm about the research project from all our partners, organisations, and people involved,” says Associate Professor Eliott.

“Hearing the stories of those living with a life-limiting illness – both from patients and families – is clearly addressing a need.

“We were also struck by how much people with these illnesses factor their family’s needs into their decision-making. This is different to assumptions that people make decisions by themselves thinking about their needs and desires only.”

Death and end-of-life issues are still a sensitive topic in Australian society, but examining palliative care services through people’s lived experience, as this study is doing, is expected to have multi-faceted benefits.

“There is a myth that palliative care means that death is imminent and that you are ‘giving up’, but palliative care is really about providing emotional and practical support for those living with a life-limiting illness,” says Associate Professor Eliott.

“Research tells us that earlier referral to palliative care gives patients and families more control and helps to coordinate the care provided.

“In addition, palliative care can extend the time you have left and improve the quality of that time – for both patients and families, who can feel comforted their family member received the care they needed so their last days were as good as they could be.”

Those interested in participating in the study can email pcrc@adelaide.edu.au.