Skip to main content

Evaluation of an advance care planning web-based resource: applicability for cancer treatment patients

Abstract

Purpose

The purpose of this study was to explore the acceptability, applicability, and understandability of a promising advance care planning (ACP) web-based resource for use with oncology patients, and determine whether revisions to the website would be necessary before implementation into oncology care. The resource is called PREPARE (www.prepareforyourcare.org) and it had not been tested for use within oncology, but had previously been shown to influence the readiness of older, community-dwelling adults to engage in ACP behaviors.

Methods

This qualitative descriptive study included participants receiving cancer medications and one participant on watchful waiting post-chemotherapy (n = 21). Data were collected via cognitive interviewing, followed by a brief semi-structured interview to gather a meaningful account of the participants’ experience with PREPARE. Content analysis resulted in a comprehensive summary of what participants liked and did not like about the resource, as well as suggestions for change.

Results

Overall, participants agreed PREPARE was acceptable, applicable, and understandable for cancer patients. A small number of participants had difficulty with the life-limiting language found within the website and this requires follow-up to determine whether the language causes distress or disengagement from ACP. These findings extend our understanding of barriers to engagement in ACP that appear unique to cancer patients receiving active treatment.

Conclusions

Results indicated that PREPARE is a reflective, capacity-building ACP resource that was acceptable, applicable, and understandable for use in oncology. These findings offer direction for both research and practice.

This is a preview of subscription content, access via your institution.

References

  1. 1.

    British Columbia Ministry of Health (2012) My voice—expressing my wishes for future health care treatment Retrieved July 24, 2016, from http://www.health.gov.bc.ca/library/publications/year/2013/MyVoice-AdvanceCarePlanningGuide.pdf

  2. 2.

    Robinson C (2011) Advance care planning: re-visioning our ethical approach. Can J Nurs Res 43:18–27

    PubMed  Google Scholar 

  3. 3.

    Robinson C, Fyles G, McKenzie M (2015) Oncologist experience implementing goals of care discussions in everyday ambulatory oncology practice: implications for education. J Cancer Educ:1–7. https://doi.org/10.1007/s13187-015-z

  4. 4.

    Sudore RL, Knight SJ, McMahan RD, Feuz M, Farrell D, Miao Y, Barnes DE (2014) A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study. J Pain Symptom Manag 47:674–686. https://doi.org/10.1016/j.jpainsymman.2013.05.023

    Article  Google Scholar 

  5. 5.

    Sudore RL, Fried TR (2010) Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Ann Intern Med 153:256–261. https://doi.org/10.7326/0003-4819-153-4-201008170-00008

    Article  PubMed  PubMed Central  Google Scholar 

  6. 6.

    Downar J, You JJ, Bagshaw SM et al (2015) Nonbeneficial treatment Canada: definitions, causes, and potential solutions from the perspective of healthcare practitioners. Crit Care Med 43:270–281. https://doi.org/10.1097/CCM.0000000000000704

    Article  PubMed  Google Scholar 

  7. 7.

    Tanuseputro P, Wodchis WP, Fowler R, Walker P, Bai YQ, Bronskill SE, Manuel D (2015) The health care cost of dying: a population-based retrospective cohort study of the last year of life in Ontario, Canada: E0121759. PLoS One 10. https://doi.org/10.1371/journal.pone.0121759

  8. 8.

    Yeh JC, Cheng MJ, Chung CH, Smith TJ (2014) Using a question prompt list as a communication aid in advanced cancer care. J Oncol Pract 10:e137–e141. https://doi.org/10.1200/JOP.2013.001295

    Article  PubMed  PubMed Central  Google Scholar 

  9. 9.

    Zalonis R, Slota M (2014) The use of palliative care to promote autonomy in decision making. Clin J Oncol Nurs 18:707–711. https://doi.org/10.1188/14.CJON.707-711

    Article  PubMed  Google Scholar 

  10. 10.

    Carstairs S (2010) Raising the bar: a roadmap for the future of palliative care in Canada. Ottawa: senate of Canada. Retrieved July 24, 2016, from http://www.Virtualhospice.Ca/en_US/main+site+navigation/home/ support/resources/Books_+Links_+and+more/hospice+and+palliative+care/online+resources/raising+the+Bar_+a+roadmap+for+the+future+of+palliative+care+in+Canada.Aspx

  11. 11.

    Canadian Hospice Palliative Care Association (2012) Advance care planning in Canada: national framework. Retrieved July 24, 2016, from http://www.chpca.net/media/7449/acp_synopsis_of_the_framework_sept_1 6_10.pdf

  12. 12.

    Canadian Hospice Palliative Care Association (2013) What Canadians say: the way forward survey report, for the way forward initiative. Ottawa, ON: Harris/Decima. Retrieved July 24, 2016, from http://www.hpcintegration.ca/resources/what-canadians-say.aspx

  13. 13.

    Samara J, Larkin D, Chan CW, Lopez V (2013) Advance care planning in the oncology settings. Int J Evid Based Healthc 11:110–114. https://doi.org/10.1111/1744-1609.12011

    Article  PubMed  Google Scholar 

  14. 14.

    Peppercorn JM, Smith TJ, Helft PR et al (2011) American society of clinical oncology statement: toward individualized care for patients with advanced cancer. J Clin Oncol 29:755–760. https://doi.org/10.1200/JCO.2010.33.1744

    Article  PubMed  Google Scholar 

  15. 15.

    Cresswell M (2015) Evaluation of a web-based tool designed to prepare people for treatment decisions and advance care planning: applicability in oncology. Thesis, University of British Columbia. Retrieved Aug 20, 2016, from https://open.library.ubc.ca/cIRcle/collections/ubctheses/24/items/1.0221369

  16. 16.

    Sandelowski M (2000) Focus on research methods: whatever happened to qualitative description? Res Nurs Health 23:334–340. https://doi.org/10.1002/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G

    CAS  Article  PubMed  Google Scholar 

  17. 17.

    Sandelowski M (2010) What's in a name? Qualitative description revisited. Res Nurs Health 33:77–84. https://doi.org/10.1002/nur.20362

    PubMed  Google Scholar 

  18. 18.

    Waddington P, Bull R (2007) Social research UPDATE: cognitive interviewing as a research technique. Department of Sociology University of Surrey. Retrieved July 24, 2016, from http://sru.soc.surrey.ac.uk/SRU50.html

  19. 19.

    Willis G (1999) Cognitive interviewing: a “how to” guide. Research Triangle Institute. Retrieved Sept 5, 2016, from http://appliedresearch.cancer.gov/archive/cognitive/interview.pdf

  20. 20.

    McMahan RD, Knight SJ, Fried TR, Sudore RL (2012) Advance care planning beyond advance directives: perspectives from patients and surrogates. J Pain Symptom Manag 46:355–365. https://doi.org/10.1016/j.jpainsymman.2012.09.006

    Article  Google Scholar 

  21. 21.

    Michael N, O’Callaghan C, Clayton J et al (2013) Understanding how cancer patients actualise, relinquish, and reject advance care planning: implications for practice. Support Care Cancer 21:2195–2205. https://doi.org/10.1007/s00520-013-1779-6

    Article  PubMed  Google Scholar 

  22. 22.

    Rand KL, Banno DA, Shea AM, Cripe LD (2016) Life and treatment goals of patients with advanced, incurable cancer. Support Care Cancer 24:2952–2962. https://doi.org/10.1007/s00520-016-3113-6

    Google Scholar 

  23. 23.

    Sulmasy DP, Astrow AB, He MK, Seils DM, Meropol NJ, Micco E, Weinfurt KP (2010) The culture of faith and hope: patients' justifications for their high estimations of expected therapeutic benefit when enrolling in early phase oncology trials. Cancer 116:3702–3711. https://doi.org/10.1002/cncr.25201

    Article  PubMed  PubMed Central  Google Scholar 

  24. 24.

    Walczak A, Henselmans I, Tattersall MHN et al (2015) A qualitative analysis of responses to a question prompt list and prognosis and end-of-life care discussion prompts delivered in a communication support program. Psycho-Oncology 24:287–293. https://doi.org/10.1002/pon.3635

    Article  PubMed  Google Scholar 

  25. 25.

    Buiting HM, Terpstra W, Dalhuisen F, Gunnink-Boonstra N, Sonke GS, den Hartogh G (2013) The facilitating role of chemotherapy in the palliative phase of cancer: qualitative interviews with advanced cancer patients: E77959. PLoS One 8:e77959. https://doi.org/10.1371/journal.pone.0077959

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  26. 26.

    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. Int J Nurs Stud 49:718–726. https://doi.org/10.1016/j.ijnurstu.2011.12.003

    Article  PubMed  Google Scholar 

  27. 27.

    Back A, Anderson W, Bunch L, Marr L, Wallace J, Yang H, Arnold R (2008) Communication about cancer near the end of life. Cancer 113:1897–1910. https://doi.org/10.1002/cncr.23653

    Article  PubMed  PubMed Central  Google Scholar 

  28. 28.

    Zhou G, Stoltzfus JC, Houldin AD, Parks SM, Swan BA (2010) Knowledge, attitudes, and practice behaviors of oncology advanced practice nurses regarding advanced care planning for patients with cancer. Oncol Nurs Forum 37:E400–E410. https://doi.org/10.1188/10.ONF.E400-E410

    Article  PubMed  Google Scholar 

  29. 29.

    Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keatin NL, Schrag D (2012) Patients' expectations about effects of chemotherapy for advanced cancer. N Engl J Med 367:1616–1625. https://doi.org/10.1056/NEJMoa1204410

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  30. 30.

    Bernacki RE, Block SD (2014) Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 174:1994–2003. https://doi.org/10.1001/jamainternmed.2014.5271

    Article  PubMed  Google Scholar 

Download references

Funding

The research was partially funded by a grant from the British Columbia Cancer Foundation (H13-02044; PI Robinson).

Author information

Affiliations

Authors

Corresponding author

Correspondence to Carole A. Robinson.

Ethics declarations

The study was approved by the University Behavioral Research Ethics Board.

Conflict of interest

The study was partially funded by a grant from the British Columbia Cancer Foundation (H13-02044; PI Robinson). The authors do not have competing financial interests or a financial relationship with the sponsoring agency. Dr. Robinson has full control of all primary data and agrees to allow the journal to review the data if requested.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Cresswell, M.A., Robinson, C.A., Fyles, G. et al. Evaluation of an advance care planning web-based resource: applicability for cancer treatment patients. Support Care Cancer 26, 853–860 (2018). https://doi.org/10.1007/s00520-017-3901-7

Download citation

Keywords

  • Advance care planning
  • Oncology
  • Cancer
  • Active treatment
  • Intervention
  • Evaluation