Skip to main content
SpringerLink
Log in

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

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

Data availability

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

References

  1. Australian Institute of Health and Welfare 2019. Cancer in Australia: in brief 2019. Cancer Series No. 122. Cat No. CAN 126. Canberra: AIHW

  2. World Health Organisation (2018) International Agency for Research on Cancer: latest global cancer data. Geneva. Cited 1 May 2020. Available https://www.who.int/cancer/PRGlobocanFinal.pdf

  3. American Cancer Society (2018) Global cancer facts and figures 4th edition. Cited 26 June 2020. Available www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/global-cancer-facts-and-figures/global-cancer-facts-and-figures-4th-edition.pdf

  4. Langton JM, Srasuebkul P, Reeve R, Parkinson B, Gu Y, Buckley NA, Haas M, Viney R, Pearson S-A (2015) Resource use, costs and quality of end-of-life care: observations in a cohort of elderly Australian cancer decedents. Implement Sci 10(1):25

    Article  Google Scholar 

  5. Langton JM, Reeve R, Srasuebkul P, Haas M, Viney R, Currow D, Pearson S-A (2016) Health service use and costs in the last 6 months of life in elderly decedents with a history of cancer: a comprehensive analysis from a health payer perspective. Brit J Cancer 114(11):1293–1302

    Article  CAS  Google Scholar 

  6. Johnson S, Butow P, Kerridge I, Tattersall M (2016) Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers. Psycho-Oncol. 25(4):362–386

    Article  Google Scholar 

  7. Lawlor PG, Gagnon B, Mancini IL, Pereira JL, Hanson J, Suarez-Almazor ME, Bruera ED (2000) Occurrence, causes, and outcome of delirium in patients with advanced cancer: a prospective study. Arch Intern Med 160(6):786–794

    Article  CAS  Google Scholar 

  8. Reeve R, Srasuebkul P, Langton JM, Haas M, Viney R, Pearson S-A (2018) Health care use and costs at the end of life: a comparison of elderly Australian decedents with and without a cancer history. BMC Palliat Care 17(1):1

    Article  Google Scholar 

  9. Network NCI (2015) Older people and cancer. NHS England

  10. Australian Commission on Safety and Quality in Health Care (2015) National Consensus Statement: essential elements for safe and high-quality end-of-life care. ACSQHC, Sydney Cited 25 Jul 2019. Available https://www.safetyandquality.gov.au/sites/default/files/migrated/National-Consensus-Statement-Essential-Elements-forsafe-high-quality-end-of-life-care.pdf

    Google Scholar 

  11. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski PK (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300(14):1665–1673

    Article  CAS  Google Scholar 

  12. Mack JW, Weeks JC, Wright AA, Block SD, Prigerson HG (2010) End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol 28(7):1203–1208

    Article  Google Scholar 

  13. Rhee JJ, Zwar NA, Kemp LA (2013) Why are advance care planning decisions not implemented? Insights from interviews with Australian general practitioners. J Palliat Med 16(10):1197–1204

    Article  Google Scholar 

  14. Silvester W, Fullam RS, Parslow RA, Lewis VJ, Sjanta R, Jackson L, White V, Gilchrist J (2013) Quality of advance care planning policy and practice in residential aged care facilities in Australia. BMJ Support Palliat 3(3):349–357

    Article  Google Scholar 

  15. Rodi H, Sellars M, Todd J, Detering KM, Nolte L (2020) Advance care planning for people with cancer: a rapid review of the literature. Advance Care Planning Australia, Austin Health

    Google Scholar 

  16. Gamertsfelder EM, Seaman JB, Tate J, Buddadhumaruk P, Happ MB (2015) Prevalence of advance directives among older adults admitted to intensive care units and requiring mechanical ventilation. J Gerontol Nurs 42(4):34–41

    Article  Google Scholar 

  17. Meeussen K, Van den Block L, Echteld M, Bossuyt N, Bilsen J, Van Casteren V, Abarshi E, Donker G, Onwuteaka-Philipsen B, Deliens L (2011) Advance care planning in Belgium and The Netherlands: a nationwide retrospective study via sentinel networks of general practitioners. J Pain Symptom Manag 42(4):565–577

    Article  Google Scholar 

  18. Yadav KN, Gabler NB, Cooney E, Kent S, Kim J, Herbst N, Mante A, Halpern SD, Courtright KR (2017) Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Aff 36(7):1244–1251

    Article  Google Scholar 

  19. White B, Tilse C, Wilson J, Rosenman L, Strub T, Feeney R, Silvester W (2014) Prevalence and predictors of advance directives in Australia. Intern Med J 44(10):975–980. https://doi.org/10.1111/imj.12549

    Article  CAS  PubMed  Google Scholar 

  20. Buck K, Detering KM, Sellars M, Sinclair C, White B, Kelly H, Nolte L (2019) Prevalence of advance care planning documentation in Australian health and residential aged care services. Advance Care Planning Australia, Austin Health

    Google Scholar 

  21. Detering KM, Sellars M, Kelly H, Clayton JM, Buck K, Nolte L (2020) Prevalence of advance care planning documentation and self-reported uptake in older Australians with a cancer diagnosis. J Geriatr Oncol

  22. Spelten ER, Geerse O, van Vuuren J, Timmis J, Blanch B, Duijts S, MacDermott S (2019) Factors influencing the engagement of cancer patients with advance care planning: a scoping review. Eur J Cancer Care (Engl) 28(3):e13091. https://doi.org/10.1111/ecc.13091

    Article  Google Scholar 

  23. Bestvina CM, Polite BN (2017) Implementation of advance care planning in oncology: a review of the literature. J Oncol Pract 13(10):657–662

    Article  Google Scholar 

  24. Starr LT, Ulrich CM, Corey KL, Meghani SH (2019) Associations among end-of-life discussions, health-care utilization, and costs in persons with advanced cancer: a systematic review. Am J Hosp Palliat Me 1049909119848148. https://doi.org/10.1177/1049909119848148

  25. Levoy K, Salani D (2018) A systematic review of advance care planning interventions for clients with cancer using the transtheoretical model of behavior change. J Pain Symptom Manag 55(2):667–668

    Article  Google Scholar 

  26. Kiely BE, Tattersall MH, Stockler MR (2010) Certain death in uncertain time: Informing hope by quantifying a best case scenario. J Clin Oncol 28(16):2802–2804

    Article  Google Scholar 

  27. Peppercorn JM, Smith TJ, Helft PR, DeBono DJ, Berry SR, Wollins DS, Hayes DM, Von Roenn JH, Schnipper LE (2011) American society of clinical oncology statement: toward individualized care for patients with advanced cancer. J Clin Oncol 29(6):755–760

    Article  Google Scholar 

  28. Fried TR, O’Leary JR (2008) Using the experiences of bereaved caregivers to inform patient-and caregiver-centered advance care planning. J Gen Intern Med 23(10):1602–1607

    Article  Google Scholar 

  29. Robinson CA, Fyles G, McKenzie M (2017) Oncologist experience implementing goals of care discussions in everyday ambulatory oncology practice: implications for education. J Cancer Ed 32(2):301–307

    Article  Google Scholar 

  30. Baile WF, Kudelka AP, Beale EA, Glober GA, Myers EG, Greisinger AJ, Bast RC Jr, Goldstein MG, Novack D, Lenzi R (1999) Communication skills training in oncology: description and preliminary outcomes of workshops on breaking bad news and managing patient reactions to illness. Cancer: Interdisc Int J Am Cancer Soc 86(5):887–897

    Article  CAS  Google Scholar 

  31. Block SD (2002) Medical education in end-of-life care: the status of reform. J Palliat Med 5(2):243–248

    Article  Google Scholar 

  32. Boyd K, Mason B, Kendall M, Barclay S, Chinn D, Thomas K, Sheikh A, Murray SA (2010) Advance care planning for cancer patients in primary care: a feasibility study. Brit J Gen Pract 60(581):e449–e458

    Article  Google Scholar 

  33. Bernacki RE, Block S (2014) American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 174(12):1994–2003

    Article  Google Scholar 

  34. Hudson P, Payne S. The future of family caregiving: research, social policy and clinical practice. Family carers in palliative care: a guide for health and social care professionals. 2009:2009

  35. Edwards SB, Olson K, Koop PM, Northcott HC (2012) Patient and family caregiver decision making in the context of advanced cancer. Cancer Nurs 35(3):178–186

    Article  Google Scholar 

  36. Australian Bureau of Statistics. Australian Demographic Statistics (2019) Cited 17 Apil 2020. Available https://www.abs.gov.au/Population

  37. Ugalde A, O'Callaghan C, Byard C, Brean S, MacKay J, Boltong A, Davoren S, Lawson D, Parente P, Michael N, Livingston P (2018) Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer. Support Care Cancer 26(11):3765–3771. https://doi.org/10.1007/s00520-018-4241-y

    Article  PubMed  Google Scholar 

  38. Díaz-Montes TP, Johnson MK, Giuntoli RL, Brown AJ (2013) Importance and timing of end-of-life care discussions among gynecologic oncology patients. Am J Hosp Palliat Me 30(1):59–67

    Article  Google Scholar 

  39. Barnes KA, Barlow CA, Harrington J, Ornadel K, Tookman A, King M, Jones L (2011) Advance care planning discussions in advanced cancer: analysis of dialogues between patients and care planning mediators. Palliat Support Care 9(1):73–79

    Article  Google Scholar 

  40. Barakat A, Barnes SA, Casanova MA, Stone MJ, Shuey KM, Miller AM (2013) Advance care planning knowledge and documentation in a hospitalized cancer population. In: Baylor University Medical Center Proceedings, vol 4. Taylor & Francis, pp 368–372

  41. Waller A, Turon H, Bryant J, Zucca A, Evans TJ, Sanson-Fisher R (2019) Medical oncology outpatients’ preferences and experiences with advanced care planning: a cross-sectional study. BMC Cancer 19(1):63. https://doi.org/10.1186/s12885-019-5272-6

    Article  PubMed  PubMed Central  Google Scholar 

  42. Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keating NL, Schrag D (2012) Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med 367(17):1616–1625

    Article  CAS  Google Scholar 

  43. Waller A, Douglas C, Sanson-Fisher R, Zdenkowski N, Pearce A, Evans T, Walsh J (2018) Dances with denial: have medical oncology outpatients conveyed their end-of-life wishes and do they want to? J Natl Compr Cancer Netw 16(5):498–505. https://doi.org/10.6004/jnccn.2017.7054

    Article  Google Scholar 

  44. Dionne-Odom JN, Ejem D, Azuero A, Taylor RA, Rocque GB, Turkman Y, Thompson MA, Knight SJ, Martin MY, Bakitas MA (2018) Factors associated with family caregivers’ confidence in future surrogate decision making for persons with cancer. J Palliat Med 21(12):1705–1712

    Article  Google Scholar 

  45. Verbakel E, Tamlagsrønning S, Winstone L, Fjær EL, Eikemo TA (2017) Informal care in Europe: findings from the European Social Survey (2014) special module on the social determinants of health. Eur J Publ Health 27(suppl_1):90–95. https://doi.org/10.1093/eurpub/ckw229

    Article  Google Scholar 

  46. Detering K, Tran J, Nolte L, Sellars M (2020) The Australian public’s knowledge, attitudes and experiences regarding substitute decision-making for medical decisions: a national cross-sectional survey study. Advance Care Planning Australia, Austin Health

    Google Scholar 

  47. Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ (2014) Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc 15(7):477–489

    Article  Google Scholar 

  48. Caplan GA, Meller A, Squires B, Chan S, Willett W (2006) Advance care planning and hospital in the nursing home. Age Ageing 35(6):581–585

    Article  Google Scholar 

Download references

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
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Karen Detering
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Marcus Sellars
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Ashley Macleod
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Julia Todd
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Sonia Fullerton
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Amy Waller
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Linda Nolte
    View author publications

    You can also search for this author in PubMed Google Scholar

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.

Ethics declarations

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.

Code availability

Not relevant to this study.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

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

Keywords

Search

Navigation