Supportive Care in Cancer

, Volume 21, Issue 8, pp 2195–2205 | Cite as

Understanding how cancer patients actualise, relinquish, and reject advance care planning: implications for practice

  • Natasha Michael
  • Clare O’Callaghan
  • Josephine Clayton
  • Annabel Pollard
  • Nikola Stepanov
  • Odette Spruyt
  • Michael Michael
  • David Ball
Original Article

Abstract

Purpose

Although advance care planning (ACP) is recognised as integral to quality cancer care, it remains poorly integrated in many settings. Given cancer patients’ unpredictable disease trajectories and equivocal treatment options, a disease-specific ACP model may be necessary. This study examines how Australian cancer patients consider ACP. Responses will inform the development of an Australian Cancer Centre’s ACP programme.

Methods

A constructivist research approach with grounded theory design was applied. Eighteen adults from lung and gastro-intestinal tumour streams participated. Participants first described their initial understanding of ACP, received ACP information, and finally completed a semi-structured interview assisted by the vignette technique. Qualitative inter-rater reliability was integrated.

Results

Participants initially had scant knowledge of ACP. On obtaining further information, their responses indicated that: For cancer patients, ACP is an individualised, dynamic, and shared process characterised by myriad variations in choices to actualise, relinquish, and/or reject its individual components (medical enduring power of attorney, statement of choices, refusal of treatment certificate, and advanced directive). Actualisation of each component involves considering, possibly conversing about, planning, and communicating a decision, usually iteratively. Reactions can change over time and are informed by values, memories, personalities, health perceptions, appreciation of prognoses, and trust or doubts in their substitute decision makers.

Conclusion

Findings endorse the value of routinely, though sensitively, discussing ACP with cancer patients at various time points across their disease trajectory. Nonetheless, ACP may also be relinquished or rejected and ongoing offers for ACP in some patients may be offensive to their value system.

Keywords

Advance care planning Cancer Adults Advance directives 

References

  1. 1.
    Canadian Hospice Palliative Care Association (2009) Advance care planning in Canada: a national framework and implementation. National roundtable proceedings. Advance Care Planning in Canada: National Roundtable Proceedings, CanadaGoogle Scholar
  2. 2.
    Office of the Public Adocate (2012) Promoting the rights, interests and dignity of people with a disability. Victoria, Australia. http://www.publicadvocate.vic.gov.au/. Accessed 6 October 2012
  3. 3.
    Respecting Patient Choices (2012) http://www.respectingpatientchoices.org.au/. Accessed 6 October 2012
  4. 4.
    Walling A, Lorenz KA, Dy SM, Naeim A, Sanati H, Asch SM, Wenger NS (2008) Evidence-based recommendations for information and care planning in cancer care. J Clin Oncol 26:3896–3902PubMedCrossRefGoogle Scholar
  5. 5.
    Epstein AS, Volandes AE, O’Reilly EM (2011) Building on individual, state, and federal initiatives for advance care planning, an integral component of palliative and end-of-life cancer care. J Oncol Pract 7(6):355–359PubMedCrossRefGoogle Scholar
  6. 6.
    Tan TS, Jatoi A (2008) An update on advance directives in the medical record: findings from 1186 consecutive patients with unresectable exocrine pancreas cancer. J Gastrointest Cancer 39:100–103PubMedCrossRefGoogle Scholar
  7. 7.
    Levin TT, Li Y, Weiner JS, Lewis F, Bartell A, Piercy J, Kissane DW (2008) How do-not-resuscitate orders are utilized in cancer patients: timing relative to death and communication-training implications. Palliat Support Care 6(4):341–348PubMedCrossRefGoogle Scholar
  8. 8.
    Detering KM, Hancock AD, Reade MC, Silvester W (2010) The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. doi:10.1136/bmj.c1345
  9. 9.
    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):73–79PubMedCrossRefGoogle Scholar
  10. 10.
    Lamont EB, Siegler M (2000) Paradoxes in cancer patients’ advance care planning. J Palliat Med 3:27–35PubMedCrossRefGoogle Scholar
  11. 11.
    Jones L, Harrington J, Barlow CA, Tookman A, Drake R, Barnes K, King M (2011) Advance care planning in advanced cancer: can it be achieved? An exploratory randomized patient preference trial of a care planning discussion. Palliat Support Care 9:3–13PubMedCrossRefGoogle Scholar
  12. 12.
    Barnes K, Jones L, Tookman A, King M (2007) Acceptability of an advance care planning interview schedule: a focus group study. Palliat Med 21:23–28PubMedCrossRefGoogle Scholar
  13. 13.
    Fu S, Barber FD, Naing A, Wheler J, Hong D, Falchook G et al (2012) Advance care planning in patients with cancer referred to a phase I clinical trials program: the MD Anderson Cancer Center experience. J Clin Oncol 30:2891–2896PubMedCrossRefGoogle Scholar
  14. 14.
    Gattellari M, Butow PN, Tattersall MH, Dunn SM, MacLeod CA (1999) Misunderstanding in cancer patients: why shoot the messenger? Ann Oncol 10:39–46PubMedCrossRefGoogle Scholar
  15. 15.
    Robinson CA (2012) “Our best hope is a cure.” Hope in the context of advance care planning. Palliat Support Care 10:1–8CrossRefGoogle Scholar
  16. 16.
    Horne G, Seymour J, Payne S (2012) Maintaining integrity in the face of death: a grounded theory to explain the perspectives of people affected by lung cancer about the expression of wishes for end of life care. Internat J Nurs Stud 49:718–726CrossRefGoogle Scholar
  17. 17.
    Peppercorn JM, Smith TJ, Helft HR, DeBono DJ, Berry SR, Wollins DS et al (2011) American Society of Clinical Oncology Statement: toward individualized care for patients with advanced cancer. J Clin Oncol 29:755–760PubMedCrossRefGoogle Scholar
  18. 18.
    Dow LA, Matsuyama RK, Ramakrishnan V, Kuhn L, Lamont EB, Lyckholm L, Smith TJ (2010) Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives. J Clin Oncol 28:299–304PubMedCrossRefGoogle Scholar
  19. 19.
    Patel RV, Sinuff T, Cook DJ (2004) Influencing advance directive completion rates in non-terminally ill patients: a systematic review. J Crit Care 19:1–9PubMedCrossRefGoogle Scholar
  20. 20.
    Hanson LC, Tulsky JA, Danis M (1997) Can clinical interventions change care at the end of life? Ann Intern Med 126:381–388PubMedCrossRefGoogle Scholar
  21. 21.
    Ho A (2008) Relational autonomy or undue pressure? Family’s role in medical decision-making. Scand J Caring Sci 22(1):128–135PubMedCrossRefGoogle Scholar
  22. 22.
    Clayton JM, Butow PN, Arnold RM, Tattersall MH (2005) Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study. Support Care Cancer 13:589–599PubMedCrossRefGoogle Scholar
  23. 23.
    Butow P, Sze M, Dugal-Beri P, Mikhail M, Eisenbruch M, Jefford M et al (2011) From inside the bubble: migrants’ perceptions of communication with the cancer team. Support Care Cancer 19:281–290CrossRefGoogle Scholar
  24. 24.
    Bravo G, Dubois MF, Wagneur B (2008) Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis. Soc Sci Med 67:1122–1132PubMedCrossRefGoogle Scholar
  25. 25.
    Berry SR, Singer PA (1998) The cancer specific advance directive. Cancer 82:1570–1577PubMedCrossRefGoogle Scholar
  26. 26.
    Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M (2006) Developing and evaluating complex interventions: new guidance. Medical Research Council.www.mrc.ac.uk/complexinterventionsguidance. Accessed 6 October 2012
  27. 27.
    Finnemore M, Sikkink (2001) Taking stock: the constructivist research program in international relations and comparative politics. Annu Rev Polit Sci 4:301–416CrossRefGoogle Scholar
  28. 28.
    Corbin J, Strauss A (2008) Basics of qualitative research 3e: techniques and procedures for developing grounded theory. Sage Publications, Thousand OaksGoogle Scholar
  29. 29.
    Finch J (1987) The vignette technique in survey research. Sociology 21:105–114CrossRefGoogle Scholar
  30. 30.
    Fins JJ, Maltby BS, Friedmann E, Greene MG, Norris K, Adelman R, Byock I (2005) Contracts, covenants and advance care planning: an empirical study of the moral obligations of patient and proxy. J Pain Symptom Manag 29:55–68CrossRefGoogle Scholar
  31. 31.
    ATLAS (2009) ATLAS V.5.5.9. ATLAS.ti Scientific Software Development, BerlinGoogle Scholar
  32. 32.
    Kitto SC, Chesters J, Grbich C (2008) Criteria for authors in the submission and assessment of qualitative research articles for the Medical Journal of Australia. Med J Aust 188:243–246PubMedGoogle Scholar
  33. 33.
    Horne G, Seymour J, Shepherd K (2006) Advance care planning for patients with inoperable lung cancer. Int J Palliat Nurs 12:172–178PubMedGoogle Scholar
  34. 34.
    Simon J, Murray A, Raffin S (2008) Facilitated advance care planning: what is the patient experience? J Palliat Care 24:256–264PubMedGoogle Scholar
  35. 35.
    Johnstone MJ, Kanitsaki O (2009) Ethics and advance care planning in a culturally diverse society. J Transcult Nurs 20:405–416PubMedCrossRefGoogle Scholar
  36. 36.
    Candib L (2002) Truth telling and advance planning at the end of life: Problems with autonomy in a multicultural world. Fam Sys Health 20:213–228CrossRefGoogle Scholar
  37. 37.
    Gillam L, Sullivan J (2011) Ethics at the end of life: who should make decisions about treatment limitations for young children with life-threatening or life-limiting conditions? J Paeditr Child Health 47:594–598CrossRefGoogle Scholar
  38. 38.
    Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keating NL et al (2012) Pateints’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med 367:1616–1625PubMedCrossRefGoogle Scholar
  39. 39.
    Weeks JC, Cook F, O’Day SJ, Peterson LM, Wenger N, Reding D et al (1998) Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA 279:1709–1214PubMedCrossRefGoogle Scholar
  40. 40.
    Zimmermann C (2004) Denial of impending death: a discourse analysis of the palliative care literature. Soc Sci Med 59:1769–1780PubMedCrossRefGoogle Scholar
  41. 41.
    Billings JA (2012) The need for safeguards in advance care planning. JGIM 27:595–600PubMedCrossRefGoogle Scholar
  42. 42.
    Tulsky JA, Fischer GS, Rose MR, Arnold RM (1998) Opening the black box: how do physicians communicate about advance directives? Ann Intern Med 129:441–449PubMedCrossRefGoogle Scholar
  43. 43.
    Clayton JM, Butow PN, Tattersall MH, Devine RJ, Simpson JM, Aggarwal G et al (2007) Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care. J Clin Oncol 25:715–723PubMedCrossRefGoogle Scholar
  44. 44.
    Lethborg C, Aranda S, Kissane D (2008) Meaning in adjustment to cancer: a model of care. Palliat Support Care 6:61–70PubMedCrossRefGoogle Scholar
  45. 45.
    Sudore RL, Schickedanz AD, Landefeld CS, Williams BA, Lindquist K, Pantilat SZ, Schillinger D (2008) Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults. J Am Geriatr Soc 56:1006–1013PubMedCrossRefGoogle Scholar
  46. 46.
    Schofield P, Carey M, Love A, Nehill C, Wein S (2006) “Would you like to talk about your future treatment options?” discussing the transition from curative cancer treatment to palliative care. Palliat Med 20:397–406PubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2013

Authors and Affiliations

  • Natasha Michael
    • 1
  • Clare O’Callaghan
    • 2
    • 3
    • 4
  • Josephine Clayton
    • 5
    • 6
  • Annabel Pollard
    • 7
  • Nikola Stepanov
    • 8
  • Odette Spruyt
    • 2
  • Michael Michael
    • 9
  • David Ball
    • 10
  1. 1.Department of Pain and Palliative Care, Peter MacCallum Cancer CentreVictoriaAustralia
  2. 2.Department of Pain and Palliative Care, Peter MacCallum Cancer CentreMelbourneAustralia
  3. 3.Department of OncologyThe University of MelbourneMelbourneAustralia
  4. 4.Department of MedicineThe University of MelbourneMelbourneAustralia
  5. 5.HammondCare Palliative and Supportive Care ServiceSydneyAustralia
  6. 6.University of SydneySydneyAustralia
  7. 7.Department of PsychologyPeter MacCallum Cancer CentreMelbourneAustralia
  8. 8.School of Population Health and Melbourne Medical SchoolThe University of MelbourneMelbourneAustralia
  9. 9.Department of Cancer Medicine, Peter MacCallum Cancer CentreMelbourneAustralia
  10. 10.Department of Radiation Oncology, Peter MacCallum Cancer CentreMelbourneAustralia

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