End-of-life care for Aboriginal and Torres Strait Islander people with cancer: an exploratory study of service utilisati
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ORIGINAL ARTICLE
End-of-life care for Aboriginal and Torres Strait Islander people with cancer: an exploratory study of service utilisation and unmet supportive care needs Christina M Bernardes 1
&
Vanessa Beesley 1 & Shaouli Shahid 2 & Linda Medlin 1 & Gail Garvey 3 & Patricia C. Valery 1
Received: 3 April 2020 / Accepted: 21 August 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
Abstract Background Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with nonIndigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs. Purpose To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life. Method Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life. Needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous Cancer Patients which measures 26 need items across 4 domains (physical/psychological; hospital care; information/ communication; practical/cultural). A descriptive analysis of health service utilisation and unmet needs was conducted. Results In total, 58 Indigenous cancer patients were included in this analysis. All patients had at least one hospital admission within the last year of their life. Most hospital admissions occurred through emergency (38%) and outpatient (31%) departments and were for acute care (85%). Palliative care represented 14% of admissions and 78% died in hospital. Approximately half (48%) did not report any unmet needs. The most frequently reported moderate-to-high unmet need items were worry about the treatment results (17%), money worries (16%) and anxiety (16%). Conclusions Utilisation of palliative care services that manage a full range of physical and psychosocial needs was low. Addressing worries about treatment results, finances and generalised anxiety are priorities in this population. Keywords End-of-life . Indigenous Australians . Cancer . Unmet supportive care needs . Service utilisation
Introduction Cancer is the third leading cause of burden of disease for Aboriginal and Torres Strait Islander people (respectfully referred to as Indigenous Australians). Indigenous Australians
* Christina M Bernardes [email protected] 1
QIMR Berghofer Medical Research Institute, 300 Herston Road, Herston QLD 4006, Australia
2
Centre for Aboriginal Studies, Curtin University, Bentley, WA, Australia
3
Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia
continue to experience significant disparities in cancer outcomes compared with other Australians [1–3]. Indigenous Australians have a higher incidence of cancers with poorer prognosis, leading to a growing need for end-of-life care [1, 4]. However, end-of-life care is not a singular entity with a universal experience and well agreed upon cou
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