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End-of-life care for Aboriginal and Torres Strait Islander people with cancer: an exploratory study of service utilisation and unmet supportive care needs

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Abstract

Background

Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous 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.

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Acknowledgements

We are grateful to the Indigenous Liaison Officers from the Cairns Base, Princess Alexander, Royal Brisbane and Women and Townsville hospitals. Without their help and support, this work would not have been possible. Most importantly, we are immensely grateful to the patients who participated in the study.

Funding

This study was supported by the NHMRC Project Grant (No. 552414). PC Valery was supported by an Australian Research Council Career Development Fellowship (No. 1083090). This study was also supported by the NHMRC-funded Centre of Research Excellence in Targeted Approaches to Improve Cancer Services for Aboriginal and Torres Strait Islander Australians (TACTICS; #1153027), the NHMRC-funded Centre of Research Excellence DISCOVER-TT (#1041111) and the Cancer Council NSW STREP Ca-CIndA (SRP 13-01; with supplementary funding from Cancer Council WA); G Garvey was funded by the Australian National Health and Medical Research Council (NHMRC) Early Career Research Fellowship (No. 1105399). The views expressed in this publication are those of the authors and do not necessarily reflect the views of the funder.

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Authors and Affiliations

  1. QIMR Berghofer Medical Research Institute, 300 Herston Road, Herston, QLD 4006, Australia

    Christina M Bernardes, Vanessa Beesley, Linda Medlin & Patricia C. Valery

  2. Centre for Aboriginal Studies, Curtin University, Bentley, WA, Australia

    Shaouli Shahid

  3. Menzies School of Health Research, Charles Darwin University, Darwin, NT, Australia

    Gail Garvey

Authors
  1. Christina M Bernardes
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  2. Vanessa Beesley
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  4. Linda Medlin
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  5. Gail Garvey
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  6. Patricia C. Valery
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Corresponding author

Correspondence to Christina M Bernardes.

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Competing interests

The authors declare that they have no competing interests.

Ethical approval

The study was approved by the Human Research Ethics Committees of QIMR Berghofer Medical Research Institute (P1219) and all participating hospitals. All procedures performed are in accordance with ethical standards of these institutions and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study. All data were treated as confidential and anonymous.

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Bernardes, C.M., Beesley, V., Shahid, S. et al. End-of-life care for Aboriginal and Torres Strait Islander people with cancer: an exploratory study of service utilisation and unmet supportive care needs. Support Care Cancer 29, 2073–2082 (2021). https://doi.org/10.1007/s00520-020-05714-4

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