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Published in: Supportive Care in Cancer 11/2018

01-11-2018 | Original Article

Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer

Authors: Anna Ugalde, Clare O’Callaghan, Clem Byard, Samantha Brean, Jenelle MacKay, Anna Boltong, Sondra Davoren, Deborah Lawson, Phillip Parente, Natasha Michael, Patricia Livingston

Published in: Supportive Care in Cancer | Issue 11/2018

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Abstract

Purpose

While advance care planning holds promise, uptake is variable and it is unclear how well people engage with or comprehend advance care planning. The objective of this study was to explore how people with cancer comprehended advance care plans and examine how accurately advance care planning documentation represented patient wishes.

Methods

This study used a qualitative descriptive design. Data collection comprised interviews and an examination of participants’ existing advance care planning documentation. Participants included those who had any diagnosis of cancer with an advance care plan recorded: Refusal of Treatment Certificate, Statement of Choices, and/or Enduring Power of Attorney (Medical Treatment) at one cancer treatment centre.

Results

Fourteen participants were involved in the study. Twelve participants were female (86%). The mean age was 77 (range: 61–91), and participants had completed their advance care planning documentation between 8 and 72 weeks prior to the interview (mean 33 weeks). Three themes were evident from the data: incomplete advance care planning understanding and confidence, limited congruence for attitude and documentation, advance care planning can enable peace of mind. Complete advance care planning understanding was unusual; most participants demonstrated partial comprehension of their own advance care plan, and some indicated very limited understanding. Participants’ attitudes and their written document congruence were limited, but advance care planning was seen as helpful.

Conclusions

This study highlighted advance care planning was not a completely accurate representation of patient wishes. There is opportunity to improve how patients comprehend their own advance care planning documentation.
Literature
1.
go back to reference Singer PA, Robertson G, Roy DJ (1996) Bioethics for clinicians: 6. Advance care planning. Can Med Assoc J 155:1689 Singer PA, Robertson G, Roy DJ (1996) Bioethics for clinicians: 6. Advance care planning. Can Med Assoc J 155:1689
2.
go back to reference Sudore RL, Lum HD, You JJ et al (2017) Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J. Pain Symptom Manag 53:821–832. e821CrossRef Sudore RL, Lum HD, You JJ et al (2017) Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J. Pain Symptom Manag 53:821–832. e821CrossRef
3.
go back to reference 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 340:c1345CrossRef 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 340:c1345CrossRef
4.
go back to reference Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A (2014) The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 28:1000–1025CrossRef Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A (2014) The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 28:1000–1025CrossRef
5.
go back to reference Houben CHM, Spruit MA, Groenen MTJ, Wouters EFM, Janssen DJA (2014) Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc 15:477–489CrossRef Houben CHM, Spruit MA, Groenen MTJ, Wouters EFM, Janssen DJA (2014) Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc 15:477–489CrossRef
6.
go back to reference 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-Oncology 25:362–386CrossRef 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-Oncology 25:362–386CrossRef
7.
go back to reference Lewis E, Cardona-Morrell M, Ong KY, Trankle SA, Hillman K (2016) Evidence still insufficient that advance care documentation leads to engagement of healthcare professionals in end-of-life discussions: a systematic review. Palliat Med 30:807–824CrossRef Lewis E, Cardona-Morrell M, Ong KY, Trankle SA, Hillman K (2016) Evidence still insufficient that advance care documentation leads to engagement of healthcare professionals in end-of-life discussions: a systematic review. Palliat Med 30:807–824CrossRef
8.
go back to reference Street M, Ottmann G, Johnstone MJ, Considine J, Livingston PM (2015) Advance care planning for older people in Australia presenting to the emergency department from the community or residential aged care facilities. Health Soc Care Community 23:513–522CrossRef Street M, Ottmann G, Johnstone MJ, Considine J, Livingston PM (2015) Advance care planning for older people in Australia presenting to the emergency department from the community or residential aged care facilities. Health Soc Care Community 23:513–522CrossRef
9.
go back to reference Tunzi M (2011) Advance care directives: realities and challenges in Central California. J Clin Ethics 22:239–248PubMed Tunzi M (2011) Advance care directives: realities and challenges in Central California. J Clin Ethics 22:239–248PubMed
10.
go back to reference Lovell A, Yates P (2014) Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008–2012. Palliat Med 28:1026–1035CrossRef Lovell A, Yates P (2014) Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008–2012. Palliat Med 28:1026–1035CrossRef
11.
go back to reference Michael N, O’Callaghan C, Clayton J, Pollard A, Stepanov N, Spruyt O, Michael M, Ball D (2013) Understanding how cancer patients actualise, relinquish, and reject advance care planning: implications for practice. Support Care Cancer 21:2195–2205CrossRef Michael N, O’Callaghan C, Clayton J, Pollard A, Stepanov N, Spruyt O, Michael M, Ball D (2013) Understanding how cancer patients actualise, relinquish, and reject advance care planning: implications for practice. Support Care Cancer 21:2195–2205CrossRef
12.
go back to reference Barnato AE, Moore R, Moore CG, Kohatsu ND, Sudore RL (2017) Financial incentives to increase advance care planning among Medicaid beneficiaries: lessons learned from two pragmatic randomized trials. J Pain Symptom Manag 54:85–95.e1CrossRef Barnato AE, Moore R, Moore CG, Kohatsu ND, Sudore RL (2017) Financial incentives to increase advance care planning among Medicaid beneficiaries: lessons learned from two pragmatic randomized trials. J Pain Symptom Manag 54:85–95.e1CrossRef
13.
go back to reference Sudore R, Boscardin J, Barnes D (2017) A patient-facing advance care planning (ACP) website called PREPARE increases ACP documentation and engagement in a randomized trial of diverse older primary care patients at a VA medical center (TH307B). J Pain Symptom Manag 53:317–318CrossRef Sudore R, Boscardin J, Barnes D (2017) A patient-facing advance care planning (ACP) website called PREPARE increases ACP documentation and engagement in a randomized trial of diverse older primary care patients at a VA medical center (TH307B). J Pain Symptom Manag 53:317–318CrossRef
14.
go back to reference Jordan JE, Buchbinder R, Osborne RH (2010) Conceptualising health literacy from the patient perspective. Patient Educ Couns 79:36–42CrossRef Jordan JE, Buchbinder R, Osborne RH (2010) Conceptualising health literacy from the patient perspective. Patient Educ Couns 79:36–42CrossRef
15.
go back to reference Hickman SE, Hammes BJ, Torke AM, Sudore RL, Sachs GA (2017) The quality of physician orders for life-sustaining treatment decisions: a pilot study. J Palliat Med 20:155–162CrossRef Hickman SE, Hammes BJ, Torke AM, Sudore RL, Sachs GA (2017) The quality of physician orders for life-sustaining treatment decisions: a pilot study. J Palliat Med 20:155–162CrossRef
16.
go back to reference Sandelowski M (2000) Focus on research methods—whatever happened to qualitative description? Res Nurs Health 23:334–340CrossRef Sandelowski M (2000) Focus on research methods—whatever happened to qualitative description? Res Nurs Health 23:334–340CrossRef
17.
go back to reference Corbin S, Strauss A (2008) Basics of qualitative research 3e: techniques and procedures for developing grounded theory. Sage, Thousand OaksCrossRef Corbin S, Strauss A (2008) Basics of qualitative research 3e: techniques and procedures for developing grounded theory. Sage, Thousand OaksCrossRef
18.
go back to reference Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 19:349–357CrossRef Tong A, Sainsbury P, Craig J (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 19:349–357CrossRef
19.
go back to reference ATLAS. ti V7: qualitative data analysis (computer program on CD-ROM). Version 7 for Windows 7 (Germany) ATLAS. ti V7: qualitative data analysis (computer program on CD-ROM). Version 7 for Windows 7 (Germany)
20.
go back to reference Rhee JJ, Zwar NA, Kemp LA (2012) Advance care planning and interpersonal relationships: a two-way street. Fam Pract 30:219–226CrossRef Rhee JJ, Zwar NA, Kemp LA (2012) Advance care planning and interpersonal relationships: a two-way street. Fam Pract 30:219–226CrossRef
21.
go back to reference Michael N, O’Callaghan C, Sayers E (2017) Managing ‘shades of grey’: a focus group study exploring community-dwellers’ views on advance care planning in older people. BMC Palliat Care 16:2CrossRef Michael N, O’Callaghan C, Sayers E (2017) Managing ‘shades of grey’: a focus group study exploring community-dwellers’ views on advance care planning in older people. BMC Palliat Care 16:2CrossRef
22.
go back to reference Fried T, Zenoni M, Iannone L (2017) A dyadic perspective on engagement in advance care planning. J Am Geriatr Soc 65:172–178CrossRef Fried T, Zenoni M, Iannone L (2017) A dyadic perspective on engagement in advance care planning. J Am Geriatr Soc 65:172–178CrossRef
23.
go back to reference Michael N, O’Callaghan C, Baird A, Hiscock N, Clayton J (2014) Cancer caregivers advocate a patient-and family-centered approach to advance care planning. J Pain Symptom Manag 47:1064–1077CrossRef Michael N, O’Callaghan C, Baird A, Hiscock N, Clayton J (2014) Cancer caregivers advocate a patient-and family-centered approach to advance care planning. J Pain Symptom Manag 47:1064–1077CrossRef
24.
go back to reference Johnson S, Clayton J, Butow PN, Silvester W, Detering K, Hall J, Kiely BE, Cebon J, Clarke S, Bell ML, Stockler M, Beale P, Tattersall MHN (2016) Advance care planning in patients with incurable cancer: study protocol for a randomised controlled trial. BMJ Open 6:e012387CrossRef Johnson S, Clayton J, Butow PN, Silvester W, Detering K, Hall J, Kiely BE, Cebon J, Clarke S, Bell ML, Stockler M, Beale P, Tattersall MHN (2016) Advance care planning in patients with incurable cancer: study protocol for a randomised controlled trial. BMJ Open 6:e012387CrossRef
25.
go back to reference Flory J, Emanuel E (2004) Interventions to improve research participants’ understanding in informed consent for research: a systematic review. JAMA 292:1593–1601CrossRef Flory J, Emanuel E (2004) Interventions to improve research participants’ understanding in informed consent for research: a systematic review. JAMA 292:1593–1601CrossRef
26.
go back to reference Emanuel LL, Danis M, Pearlman RA, Singer PA (1995) Advance care planning as a process: structuring the discussions in practice. J Am Geriatr Soc 43:440–446CrossRef Emanuel LL, Danis M, Pearlman RA, Singer PA (1995) Advance care planning as a process: structuring the discussions in practice. J Am Geriatr Soc 43:440–446CrossRef
27.
go back to reference Mullick A, Martin J, Sallnow L (2013) Advance care planning. BMJ 347:28–32CrossRef Mullick A, Martin J, Sallnow L (2013) Advance care planning. BMJ 347:28–32CrossRef
Metadata
Title
Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer
Authors
Anna Ugalde
Clare O’Callaghan
Clem Byard
Samantha Brean
Jenelle MacKay
Anna Boltong
Sondra Davoren
Deborah Lawson
Phillip Parente
Natasha Michael
Patricia Livingston
Publication date
01-11-2018
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 11/2018
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-018-4241-y

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