Research Article: Indigenous compared with non-Indigenous Australian patients at entry to specialist palliative care: Cross-sectional findings from a multi-jurisdictional dataset

Date Published: May 2, 2019

Publisher: Public Library of Science

Author(s): John A. Woods, Jade C. Newton, Sandra C. Thompson, Eva Malacova, Hanh T. Ngo, Judith M. Katzenellenbogen, Kevin Murray, Shaouli Shahid, Claire E. Johnson, Rosemary Frey.


There are few quantitative studies on palliative care provision to Indigenous Australians, a population known to experience distinctive barriers to quality healthcare and to have poorer health outcomes than other Australians.

To investigate equity of specialist palliative care service provision through characterising and comparing Indigenous and non-Indigenous patients at entry to care.

Using data (01/01/2010–30/06/2015) from all services participating in the multi-jurisdictional Palliative Care Outcomes Collaboration, Indigenous and non-Indigenous patients entering palliative care were compared on proportions vis-à-vis those expected from national statutory datasets, demographic characteristics, and entry-to-care status across fourteen ‘problem’ domains (e.g., pain, functional impairment) after matching by age, sex, and specific diagnosis.

Of 140,267 patients, 1,465 (1.0%, much lower than expected from statutory data) were Indigenous, 133,987 (95.5%) non-Indigenous, and 4,905 (3.5%) had a missing identifier. The proportion of patients with a missing identifier diminished markedly over the study period, without a corresponding increase in the proportion identified as Indigenous. Indigenous compared with non-Indigenous patients were younger (mean 62.8 versus 73.0 years, p<0.001), a higher proportion were female (51.5% versus 46.3%; p<0.001) or resided outside major cities (44.2% versus 21.5%, p<0.001). Across all domains, Indigenous compared with matched non-Indigenous patients had lower or equal risk of status requiring prompt intervention. Indigenous patients (especially those residing outside major cities) are substantially under-represented in care by services participating in the nationwide specialist palliative care Collaboration, likely reflecting widespread access barriers. However, the similarity of status indicators among Indigenous and non-Indigenous patients at entry to care suggests that Indigenous patients who are able to access these services do not disproportionately experience clinically important impediments to care initiation.

Partial Text

Aboriginal and Torres Strait Islander (hereafter respectfully referred to as Indigenous) people experience substantially poorer health outcomes than other Australians, with a life-expectancy gap of about a decade [1]. A considerable proportion of the gap in life expectancy is accounted for by chronic life-limiting illnesses [2]. Although the incidence rate of malignancies overall is similar among Indigenous compared with other Australians, cancers among Indigenous people tend to be diagnosed at a later stage (particularly among those residing in rural and remote areas), are more likely to be those with an inherently poor prognosis, and result in poorer survival even after stratification by stage at presentation [3, 4]. The Indigenous Australian population also has higher rates of common non-neoplastic life-limiting disorders such as chronic kidney disease [5], heart failure [6], and dementia [7]. Moreover, Indigenous patients are more likely than their non-Indigenous counterparts to encounter barriers in accessing health care [8]. The specific cultural needs of Indigenous patients are often inadequately addressed by service providers [9].

The dataset comprised records of 144,951 patients. Of these, 140,267 (96.8%) had a first recorded episode of care commencing during the study period and were included in the analyses.

In this large multi-jurisdictional Australian specialist palliative care dataset, patients identified as Indigenous were approximately ten years younger on average at entry to care compared with the non-Indigenous majority, and a higher proportion were females. Indigenous patients were more likely to reside outside major cities or in areas of socioeconomic disadvantage, and to commence care in a hospital setting. A comparable majority of Indigenous and non-Indigenous patients had a cancer as their principal diagnosis. The decade disparity in average age is in keeping with the well-recognised gap in life expectancy between the two groups [1]. Likewise, the modest relative female preponderance among Indigenous patients is consistent with their greater male-female disparity in deaths not amenable to palliative care (particularly those due to ‘external’ causes, e.g., injury) documented in national mortality data [30]. When matched by age, sex, and principal diagnosis, there was no difference between the two patient groups in the proportion assessed as functionally more dependent, and Indigenous patients had no greater likelihood than non-Indigenous patients of any symptom or other palliative care problem being assessed as being of moderate-severe intensity and therefore requiring urgent intervention.