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Exploring advance care planning awareness, experiences, and preferences of people with cancer and support people: an Australian online cross-sectional study

Supportive Care in Cancer volume 29, pages 3677–3688 (2021)Cite this article

Abstract

Purpose

To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia.

Methods

Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey.

Results

Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region.

Conclusion

Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.

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Fig. 1

Data availability

The corresponding author should be contacted directly for any queries related to the availability of data and material.

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Funding

This study is a Cancer Australia Supporting people with cancer Grant initiative, funded by the Australian Government. The study was delivered under the auspices of Advance Care Planning Australia which is funded by the National Palliative Care Projects within the Public Health and Chronic Disease Program, Australian Government Department of Health.

Author information

Authors and Affiliations

  1. Advance Care Planning Australia, Austin Health, PO Box 5555, Heidelberg, Melbourne, Victoria, 3084, Australia

    Helena Rodi, Karen Detering, Marcus Sellars, Ashley Macleod, Julia Todd & Linda Nolte

  2. Faculty of Health, Arts and Innovation, Swinburne University, Melbourne, Australia

    Karen Detering

  3. Australian Centre for Health Law Research, Queensland University of Technology, Brisbane, Queensland, Australia

    Marcus Sellars

  4. Department of Palliative Medicine, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia

    Sonia Fullerton

  5. School of Medicine and Public Health, University of Newcastle, Newcastle, New South Wales, Australia

    Amy Waller

Authors
  1. Helena Rodi
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  2. Karen Detering
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  4. Ashley Macleod
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  5. Julia Todd
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  6. Sonia Fullerton
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  7. Amy Waller
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  8. Linda Nolte
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Contributions

Linda Nolte (senior author) contributed to the conceptualization of the study, acquisition of funding, and final approval of the manuscript. All authors contributed to study design. Data collection and analysis were performed by Helena Rodi, Marcus Sellars, and Ashley Macleod. Manuscript development and writing were led by Helena Rodi in consultation with Karen Detering and Linda Nolte. All authors commented on previous versions of the manuscript and approved the final manuscript.

Corresponding author

Correspondence to Helena Rodi.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethics approval

The study was approved by Austin Health Human Research Ethics Committee, Melbourne, Australia (reference number: HREC/57061/Austin-2019).

Consent to participate

Participants were informed that consent was implied by completing the survey, which was voluntary and anonymous and allowed participants were able to withdraw from the survey at any time.

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Not relevant to this study.

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Rodi, H., Detering, K., Sellars, M. et al. Exploring advance care planning awareness, experiences, and preferences of people with cancer and support people: an Australian online cross-sectional study. Support Care Cancer 29, 3677–3688 (2021). https://doi.org/10.1007/s00520-020-05878-z

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  • DOI: https://doi.org/10.1007/s00520-020-05878-z

Keywords

  • Advance care planning
  • Advance care directive
  • Oncology
  • Survey
  • Caregiver
  • End-of-life care