Skip to main content
Top
Published in: BMC Palliative Care 1/2015

Open Access 01-12-2015 | Research article

A mixed method feasibility study of a patient- and family-centred advance care planning intervention for cancer patients

Authors: Natasha Michael, Clare O’Callaghan, Angela Baird, Karla Gough, Mei Krishnasamy, Nathaniel Hiscock, Josephine Clayton

Published in: BMC Palliative Care | Issue 1/2015

Login to get access

Abstract

Background

Advance care planning (ACP) is a process whereby values and goals are sensitively explored and documented to uphold patients’ wishes should they become incompetent to make decisions in the future. Evidenced-based, effective approaches are needed. This study sought to assess the feasibility and acceptability of an ACP intervention informed by phase 1 findings and assessed the suitability of measures for a phase 3 trial.

Methods

Prospective, longitudinal, mixed methods study with convenience sampling. A skilled facilitator conducted an ACP intervention with stage III/IV cancer patients and invited caregivers. It incorporated the vignette technique and optional completion/integration of ACP documents into electronic medical records (EMR). Quantitative and qualitative data were collected concurrently, analysed separately, and the two sets of findings converged.

Results

Forty-seven percent consent rate with 30 patients and 26 caregivers completing the intervention. Ninety percent of patient participants had not or probably not written future care plans. Compliance with assessments was high and missing responses to items low. Small- to medium-sized changes were observed on a number of patients and caregiver completed measures, but confidence intervals were typically wide and most included zero. An increase in distress was reported; however, all believed the intervention should be made available. Eleven documents from nine patients were incorporated into EMR. ACP may not be furthered because of intervention inadequacies, busy lives, and reluctance to plan ahead.

Conclusions

In this phase 2 study we demonstrated feasibility of recruitment and acceptability of the ACP intervention and most outcome measures. However, patient/family preferences about when and whether to document ACP components need to be respected. Thus flexibility to accommodate variability in intervention delivery, tailored to individual patient/family preferences, may be required for phase 3 research.
Appendix
Available only for authorised users
Literature
1.
go back to reference Sanders Thompson V. Making decisions in a complex information environment: evidential preference and information we trust. BMC Med Inform Decis Mak. 2013;13 Suppl 3:S7.PubMedPubMedCentralCrossRef Sanders Thompson V. Making decisions in a complex information environment: evidential preference and information we trust. BMC Med Inform Decis Mak. 2013;13 Suppl 3:S7.PubMedPubMedCentralCrossRef
2.
go back to reference Khan SA, Gomes B, Higginson IJ. End-of-life care–what do cancer patients want? Nat Rev Clin Oncol. 2014;11(2):100–8.PubMedCrossRef Khan SA, Gomes B, Higginson IJ. End-of-life care–what do cancer patients want? Nat Rev Clin Oncol. 2014;11(2):100–8.PubMedCrossRef
3.
go back to reference Peppercorn JM, Smith TJ, Helft PR, Debono DJ, Berry SR, Wollins DS, et al. American Society of Clinical Oncology Statement: Toward individualized care for patients with advanced cancer. J Clin Oncol. 2011;29(6):755–60.PubMedCrossRef Peppercorn JM, Smith TJ, Helft PR, Debono DJ, Berry SR, Wollins DS, et al. American Society of Clinical Oncology Statement: Toward individualized care for patients with advanced cancer. J Clin Oncol. 2011;29(6):755–60.PubMedCrossRef
5.
go back to reference Barnes K, Jones L, Tookman A, King M. Acceptability of an advance care planning interview schedule: a focus group study. Palliat Med. 2007;21(1):23–8.PubMedCrossRef Barnes K, Jones L, Tookman A, King M. Acceptability of an advance care planning interview schedule: a focus group study. Palliat Med. 2007;21(1):23–8.PubMedCrossRef
6.
go back to reference Michael N, O'Callaghan C, Baird A, Hiscock N, Clayton J. Cancer caregivers advocate a patient- and family-centered approach to advance care planning. J Pain Symptom Manage. 2014;47(6):1064–77.PubMedCrossRef Michael N, O'Callaghan C, Baird A, Hiscock N, Clayton J. Cancer caregivers advocate a patient- and family-centered approach to advance care planning. J Pain Symptom Manage. 2014;47(6):1064–77.PubMedCrossRef
7.
go back to reference Ferrell BR, Smith TJ, Levit L, Balogh E. Improving the quality of cancer care: implications for palliative care. J Palliat Med. 2014;17(4):393–9.PubMedCrossRef Ferrell BR, Smith TJ, Levit L, Balogh E. Improving the quality of cancer care: implications for palliative care. J Palliat Med. 2014;17(4):393–9.PubMedCrossRef
8.
go back to reference Wendtlandt K, Burman D, Swami N, Hales S, Rydall A, Rodin G, et al. Preparation for the end of life in patients with advanced cancer and association with communication with professional caregivers. Psychooncology. 2012;21(8):868–76.CrossRef Wendtlandt K, Burman D, Swami N, Hales S, Rydall A, Rodin G, et al. Preparation for the end of life in patients with advanced cancer and association with communication with professional caregivers. Psychooncology. 2012;21(8):868–76.CrossRef
11.
go back to reference Robinson CA. Our best hope is a cure. Hope in the context of advance care planning. Palliat Support Care. 2012;10(2):75–82.PubMedCrossRef Robinson CA. Our best hope is a cure. Hope in the context of advance care planning. Palliat Support Care. 2012;10(2):75–82.PubMedCrossRef
12.
go back to reference Almack K, Cox K, Moghaddam N, Pollock K, Seymour J. After you: conversations between patients and healthcare professionals in planning for end of life care. BMC Palliat Care. 2012;11:15.PubMedPubMedCentralCrossRef Almack K, Cox K, Moghaddam N, Pollock K, Seymour J. After you: conversations between patients and healthcare professionals in planning for end of life care. BMC Palliat Care. 2012;11:15.PubMedPubMedCentralCrossRef
13.
go back to reference Barnes KA, Barlow CA, Harrington J, Ornadel K, Tookman A, King M, et al. Advance care planning discussions in advanced cancer: analysis of dialogues between patients and care planning mediators. Palliat Support Care. 2011;9(1):73–9.PubMedCrossRef Barnes KA, Barlow CA, Harrington J, Ornadel K, Tookman A, King M, et al. Advance care planning discussions in advanced cancer: analysis of dialogues between patients and care planning mediators. Palliat Support Care. 2011;9(1):73–9.PubMedCrossRef
14.
go back to reference Dow LA, Matsuyama RK, Ramakrishnan V, Kuhn L, Lamont EB, Lyckholm L, et al. Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives. J Clin Oncol. 2010;28(2):299–304.PubMedCrossRef Dow LA, Matsuyama RK, Ramakrishnan V, Kuhn L, Lamont EB, Lyckholm L, et al. Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives. J Clin Oncol. 2010;28(2):299–304.PubMedCrossRef
15.
go back to reference Clayton JM, Butow PN, Tattersall MH, Devine RJ, Simpson JM, Aggarwal G, et al. 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. 2007;25(6):715–23.PubMedCrossRef Clayton JM, Butow PN, Tattersall MH, Devine RJ, Simpson JM, Aggarwal G, et al. 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. 2007;25(6):715–23.PubMedCrossRef
16.
go back to reference Michael N, O'Callaghan C, Clayton J, Pollard A, Stepanov N, Spruyt O, et al. Understanding how cancer patients actualise, relinquish and reject advance care planning: implications for practice. Support Care Cancer. 2013;21(2):2195–205.PubMedCrossRef Michael N, O'Callaghan C, Clayton J, Pollard A, Stepanov N, Spruyt O, et al. Understanding how cancer patients actualise, relinquish and reject advance care planning: implications for practice. Support Care Cancer. 2013;21(2):2195–205.PubMedCrossRef
17.
go back to reference Back AL, Anderson WG, Bunch L, Marr LA, Wallace JA, Yang HB, et al. Communication about cancer near the end of life. Cancer. 2008;113(7 Suppl):1897–910.PubMedPubMedCentralCrossRef Back AL, Anderson WG, Bunch L, Marr LA, Wallace JA, Yang HB, et al. Communication about cancer near the end of life. Cancer. 2008;113(7 Suppl):1897–910.PubMedPubMedCentralCrossRef
18.
go back to reference Tulsky JA. Beyond advance directives: importance of communication skills at the end of life. J Am Med Assoc. 2005;294(3):359–65.CrossRef Tulsky JA. Beyond advance directives: importance of communication skills at the end of life. J Am Med Assoc. 2005;294(3):359–65.CrossRef
19.
go back to reference Jezewski MA, Seeker MA, Sessana L, Finnell DS. The effectiveness of interventions to increase advance directive completion rates. J Aging Health. 2007;19(3):519–36.PubMedCrossRef Jezewski MA, Seeker MA, Sessana L, Finnell DS. The effectiveness of interventions to increase advance directive completion rates. J Aging Health. 2007;19(3):519–36.PubMedCrossRef
20.
go back to reference Butler M, Ratner E, McCreedy E, Shippee N, Kane RL. Decision aids for advance care planning: an overview of the state of the science. Ann Intern Med. 2014;161(6):408–18.PubMedCrossRef Butler M, Ratner E, McCreedy E, Shippee N, Kane RL. Decision aids for advance care planning: an overview of the state of the science. Ann Intern Med. 2014;161(6):408–18.PubMedCrossRef
21.
go back to reference El-Jawahri A, Podgurski LM, Eichler AF, Plotkin SR, Temel JS, Mitchell SL, et al. Use of video to facilitate end-of-life discussions with patients with cancer: a randomized controlled trial. J Clin Oncol. 2010;28(2):305–10.PubMedCrossRef El-Jawahri A, Podgurski LM, Eichler AF, Plotkin SR, Temel JS, Mitchell SL, et al. Use of video to facilitate end-of-life discussions with patients with cancer: a randomized controlled trial. J Clin Oncol. 2010;28(2):305–10.PubMedCrossRef
22.
go back to reference Bravo G, Dubois MF, Wagneur B. Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis. Soc Sci Med. 2008;67(7):1122–32.PubMedCrossRef Bravo G, Dubois MF, Wagneur B. Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis. Soc Sci Med. 2008;67(7):1122–32.PubMedCrossRef
23.
go back to reference Patel RV, Sinuff T, Cook DJ. Influencing advance directive completion rates in non-terminally ill patients: a systematic review. J Crit Care. 2004;19(1):1–9.PubMedCrossRef Patel RV, Sinuff T, Cook DJ. Influencing advance directive completion rates in non-terminally ill patients: a systematic review. J Crit Care. 2004;19(1):1–9.PubMedCrossRef
24.
go back to reference Sampson EL, Jones L, Thuné-Boyle IC, Kukkastenvehmas R, King M, Leurent B, et al. Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliat Med. 2011;25(3):197–209.PubMedCrossRef Sampson EL, Jones L, Thuné-Boyle IC, Kukkastenvehmas R, King M, Leurent B, et al. Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliat Med. 2011;25(3):197–209.PubMedCrossRef
25.
go back to reference Volandes AE, Levin TT, Slovin S, Caravajal RD, O’Reilly EM, Keohan ML, et al. Augmenting advance care planning in poor prognosis cancer with a video decision aid: A preintervention- postintervention study. Cancer. 2012;118(17):4331–8.PubMedPubMedCentralCrossRef Volandes AE, Levin TT, Slovin S, Caravajal RD, O’Reilly EM, Keohan ML, et al. Augmenting advance care planning in poor prognosis cancer with a video decision aid: A preintervention- postintervention study. Cancer. 2012;118(17):4331–8.PubMedPubMedCentralCrossRef
26.
go back to reference O'Connor A, Stacey D, Entwistle V, Llewell-Thomas H, Rovner D, Holmes-Rovner M, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2003;(2):CD001431. Review. Update in: Cochrane Database Syst Rev 2009;(3):CD001431.25. O'Connor A, Stacey D, Entwistle V, Llewell-Thomas H, Rovner D, Holmes-Rovner M, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2003;(2):CD001431. Review. Update in: Cochrane Database Syst Rev 2009;(3):CD001431.25.
27.
go back to reference Thabane L, Ma J, Chu R, Cheng J, Asmaila A, Rios LP, et al. A tutorial on pilot studies: the what, why and how. BMC Medical Res Methodol. 2010;10:1.CrossRef Thabane L, Ma J, Chu R, Cheng J, Asmaila A, Rios LP, et al. A tutorial on pilot studies: the what, why and how. BMC Medical Res Methodol. 2010;10:1.CrossRef
28.
go back to reference Epstein AS, Volandes AE, Chen LY, Gary KA, Li Y, Agre P, et al. A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients. J Palliat Med. 2013;16(6):623–31.PubMedCrossRef Epstein AS, Volandes AE, Chen LY, Gary KA, Li Y, Agre P, et al. A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients. J Palliat Med. 2013;16(6):623–31.PubMedCrossRef
29.
go back to reference Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345.PubMedPubMedCentralCrossRef Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345.PubMedPubMedCentralCrossRef
30.
go back to reference Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ. 2008;337:a1655.PubMedPubMedCentralCrossRef Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ. 2008;337:a1655.PubMedPubMedCentralCrossRef
33.
go back to reference Morse JM. Simultaneous and sequential qualitative mixed method designs. Qual Inq. 2010;16(11):483–91.CrossRef Morse JM. Simultaneous and sequential qualitative mixed method designs. Qual Inq. 2010;16(11):483–91.CrossRef
34.
go back to reference Finch J. The vignette technique in survey research. Sociology. 1987;21(1):105–14.CrossRef Finch J. The vignette technique in survey research. Sociology. 1987;21(1):105–14.CrossRef
35.
go back to reference Hughes R. Considering the vignette technique and its application to a study of drug injecting and HIV risk and safer behaviour. Sociol Health Ill. 1998;20(3):381–400.CrossRef Hughes R. Considering the vignette technique and its application to a study of drug injecting and HIV risk and safer behaviour. Sociol Health Ill. 1998;20(3):381–400.CrossRef
36.
go back to reference Creswell JW, Plano Clark VL. Designing and conducting mixed methods research, 2e. Los Angeles: SAGE Publications; 2011. Creswell JW, Plano Clark VL. Designing and conducting mixed methods research, 2e. Los Angeles: SAGE Publications; 2011.
37.
go back to reference IBM. SPSS Statistics for Windows VA. NY: IBM Corp; 2012. IBM. SPSS Statistics for Windows VA. NY: IBM Corp; 2012.
40.
go back to reference Fairclough DL. Design and analysis of quality of life studies in clinical trials 2e. Chapman & Hall/CRC: Boca Raton, FL; 2010. Fairclough DL. Design and analysis of quality of life studies in clinical trials 2e. Chapman & Hall/CRC: Boca Raton, FL; 2010.
41.
go back to reference Kazis LE, Anderson JJ, Meenan RF. Effect sizes for interpreting changes in health status. Med Care. 1989;27(3 Suppl):S178–89.PubMedCrossRef Kazis LE, Anderson JJ, Meenan RF. Effect sizes for interpreting changes in health status. Med Care. 1989;27(3 Suppl):S178–89.PubMedCrossRef
42.
go back to reference Cohen J. Statistical power analysis for the behavioral sciences. Hillsdale, NJ: Lawrence Erlbaum Associates; 1988. Cohen J. Statistical power analysis for the behavioral sciences. Hillsdale, NJ: Lawrence Erlbaum Associates; 1988.
43.
go back to reference Corbin JM, Strauss A. Basics of qualitative research: techniques and procedures for developing grounded theory, 3e. Thousand Oaks, CA: Sage Publications; 2008.CrossRef Corbin JM, Strauss A. Basics of qualitative research: techniques and procedures for developing grounded theory, 3e. Thousand Oaks, CA: Sage Publications; 2008.CrossRef
44.
go back to reference ATLAS.ti 7. Scientific Software Development. Berlin: ATLAS.ti; 2013. ATLAS.ti 7. Scientific Software Development. Berlin: ATLAS.ti; 2013.
45.
go back to reference Kitto SC, Chesters J, Grbich C. Quality in qualitative research. Med J Aust. 2008;188(4):243–6.PubMed Kitto SC, Chesters J, Grbich C. Quality in qualitative research. Med J Aust. 2008;188(4):243–6.PubMed
47.
go back to reference Curtis JR, Patrick DL, Caldwell E, Greenlee H, Collier AC. The quality of patient- doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians. AIDS. 1999;13(9):1123–31.PubMedCrossRef Curtis JR, Patrick DL, Caldwell E, Greenlee H, Collier AC. The quality of patient- doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians. AIDS. 1999;13(9):1123–31.PubMedCrossRef
48.
go back to reference Agar M, Ko DN, Sheehan C, Chapman M, Currow DC. Informed consent in palliative care clinical trials: challenging but possible. J Palliat Med. 2013;16(5):485–91.PubMedCrossRef Agar M, Ko DN, Sheehan C, Chapman M, Currow DC. Informed consent in palliative care clinical trials: challenging but possible. J Palliat Med. 2013;16(5):485–91.PubMedCrossRef
50.
go back to reference Vogel RI, Petzel SV, Cragg J, McClellan M, Chan D, Dickson E, et al. Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial. Gynecol Oncol. 2013;131(2):430–6.PubMedPubMedCentralCrossRef Vogel RI, Petzel SV, Cragg J, McClellan M, Chan D, Dickson E, et al. Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial. Gynecol Oncol. 2013;131(2):430–6.PubMedPubMedCentralCrossRef
51.
go back to reference Oakley A, Strange V, Bonell C, Allen E, Stephenson J. Process evaluation in randomised controlled trials of complex interventions. BMJ. 2006;332(7538):413–6.PubMedPubMedCentralCrossRef Oakley A, Strange V, Bonell C, Allen E, Stephenson J. Process evaluation in randomised controlled trials of complex interventions. BMJ. 2006;332(7538):413–6.PubMedPubMedCentralCrossRef
52.
go back to reference Aoun SM, Kristjanson LM. Challenging the framework for evidence in palliative care research. Palliat Med. 2005;19(6):461–5.PubMedCrossRef Aoun SM, Kristjanson LM. Challenging the framework for evidence in palliative care research. Palliat Med. 2005;19(6):461–5.PubMedCrossRef
54.
go back to reference Fu S, Barber FD, Naing A, Wheler J, Hong D, Falchook G, et al. Advance care planning in patients with cancer referred to a phase I clinical trials program: the MD Anderson Cancer Center experience. J Clin Oncol. 2012;30(23):2891–6.PubMedCrossRef Fu S, Barber FD, Naing A, Wheler J, Hong D, Falchook G, et al. Advance care planning in patients with cancer referred to a phase I clinical trials program: the MD Anderson Cancer Center experience. J Clin Oncol. 2012;30(23):2891–6.PubMedCrossRef
56.
go back to reference Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11(3):570–9.PubMed Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11(3):570–9.PubMed
Metadata
Title
A mixed method feasibility study of a patient- and family-centred advance care planning intervention for cancer patients
Authors
Natasha Michael
Clare O’Callaghan
Angela Baird
Karla Gough
Mei Krishnasamy
Nathaniel Hiscock
Josephine Clayton
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2015
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-015-0023-1

Other articles of this Issue 1/2015

BMC Palliative Care 1/2015 Go to the issue