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Supportive Care in Cancer
Published in: Supportive Care in Cancer 8/2013

01-08-2013 | Original Article

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

Authors: Natasha Michael, Clare O’Callaghan, Josephine Clayton, Annabel Pollard, Nikola Stepanov, Odette Spruyt, Michael Michael, David Ball

Published in: Supportive Care in Cancer | Issue 8/2013

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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.
Appendix
Available only for authorised users
Footnotes
1
A MEPOA is a legal document where an individual (the ‘donor’) appoints another person (the ‘agent’) to make decisions about medical treatment on their behalf in circumstances when the donor becomes incompetent and is unable to make decisions for themselves due to accident or illness resulting in incapacity [2].
 
2
A statement of choices provides specific information related to a person’s wishes and values [3].
 
3
A refusal of treatment certificate applies to the refusal of a medical treatment for a current condition and not to an illness/condition that may occur in the future. It does not allow for the refusal of palliative care [2].
 
4
An advance directive (AD) is typically defined as a document which is created by a person while they are competent, that defines the medical treatment that the person wishes to refuse should they become incompetent in the defined circumstances [2].
 
5
Ages and genders are stated to indicate the different participants (there were no patients with same age and gender).
 
6
To refuse to engage in all or some of ACP components and decisions.
 
7
To consciously hand over ACP decisions and/or have an expectation that others will assume ACP decisions on their behalf.
 
Literature
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, Canada
2.
3.
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 26:3896–3902PubMedCrossRef
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):355–359PubMedCrossRef
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 39:100–103PubMedCrossRef
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):341–348PubMedCrossRef
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.
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):73–79PubMedCrossRef
10.
Lamont EB, Siegler M (2000) Paradoxes in cancer patients’ advance care planning. J Palliat Med 3:27–35PubMedCrossRef
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 9:3–13PubMedCrossRef
12.
Barnes K, Jones L, Tookman A, King M (2007) Acceptability of an advance care planning interview schedule: a focus group study. Palliat Med 21:23–28PubMedCrossRef
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 30:2891–2896PubMedCrossRef
14.
Gattellari M, Butow PN, Tattersall MH, Dunn SM, MacLeod CA (1999) Misunderstanding in cancer patients: why shoot the messenger? Ann Oncol 10:39–46PubMedCrossRef
15.
Robinson CA (2012) “Our best hope is a cure.” Hope in the context of advance care planning. Palliat Support Care 10:1–8CrossRef
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 49:718–726CrossRef
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 29:755–760PubMedCrossRef
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 28:299–304PubMedCrossRef
19.
Patel RV, Sinuff T, Cook DJ (2004) Influencing advance directive completion rates in non-terminally ill patients: a systematic review. J Crit Care 19:1–9PubMedCrossRef
20.
Hanson LC, Tulsky JA, Danis M (1997) Can clinical interventions change care at the end of life? Ann Intern Med 126:381–388PubMedCrossRef
21.
Ho A (2008) Relational autonomy or undue pressure? Family’s role in medical decision-making. Scand J Caring Sci 22(1):128–135PubMedCrossRef
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 13:589–599PubMedCrossRef
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 19:281–290CrossRef
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 67:1122–1132PubMedCrossRef
25.
26.
27.
Finnemore M, Sikkink (2001) Taking stock: the constructivist research program in international relations and comparative politics. Annu Rev Polit Sci 4:301–416CrossRef
28.
Corbin J, Strauss A (2008) Basics of qualitative research 3e: techniques and procedures for developing grounded theory. Sage Publications, Thousand Oaks
29.
Finch J (1987) The vignette technique in survey research. Sociology 21:105–114CrossRef
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 29:55–68CrossRef
31.
ATLAS (2009) ATLAS V.5.5.9. ATLAS.ti Scientific Software Development, Berlin
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 188:243–246PubMed
33.
Horne G, Seymour J, Shepherd K (2006) Advance care planning for patients with inoperable lung cancer. Int J Palliat Nurs 12:172–178PubMed
34.
Simon J, Murray A, Raffin S (2008) Facilitated advance care planning: what is the patient experience? J Palliat Care 24:256–264PubMed
35.
Johnstone MJ, Kanitsaki O (2009) Ethics and advance care planning in a culturally diverse society. J Transcult Nurs 20:405–416PubMedCrossRef
36.
Candib L (2002) Truth telling and advance planning at the end of life: Problems with autonomy in a multicultural world. Fam Sys Health 20:213–228CrossRef
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 47:594–598CrossRef
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 367:1616–1625PubMedCrossRef
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 279:1709–1214PubMedCrossRef
40.
Zimmermann C (2004) Denial of impending death: a discourse analysis of the palliative care literature. Soc Sci Med 59:1769–1780PubMedCrossRef
41.
42.
Tulsky JA, Fischer GS, Rose MR, Arnold RM (1998) Opening the black box: how do physicians communicate about advance directives? Ann Intern Med 129:441–449PubMedCrossRef
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 25:715–723PubMedCrossRef
44.
Lethborg C, Aranda S, Kissane D (2008) Meaning in adjustment to cancer: a model of care. Palliat Support Care 6:61–70PubMedCrossRef
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 56:1006–1013PubMedCrossRef
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 20:397–406PubMedCrossRef
Metadata
Title
Understanding how cancer patients actualise, relinquish, and reject advance care planning: implications for practice
Authors
Natasha Michael
Clare O’Callaghan
Josephine Clayton
Annabel Pollard
Nikola Stepanov
Odette Spruyt
Michael Michael
David Ball
Publication date
01-08-2013
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 8/2013
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-013-1779-6

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