Hostname: page-component-78c5997874-g7gxr Total loading time: 0 Render date: 2024-11-05T16:20:06.927Z Has data issue: false hasContentIssue false
  • English
  • Français

Advance care planning discussions in advanced cancer: Analysis of dialogues between patients and care planning mediators

Published online by Cambridge University Press:  25 February 2011

Kelly A. Barnes ,
Cate A. Barlow ,
Jane Harrington ,
Karon Ornadel ,
Adrian Tookman ,
Michael King  and
Louise Jones
Kelly A. Barnes
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Cate A. Barlow
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Jane Harrington
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Karon Ornadel
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Adrian Tookman
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Michael King
Affiliation:
Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
Louise Jones*
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, UCL Medical School, Royal Free Campus, London, United Kingdom
*
Address correspondence and reprint requests to: Louise Jones, Department of Mental Health Sciences, 2nd Floor, UCL Medical School, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, United Kingdom. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Advance care planning (ACP) provides patients with an opportunity to consider, discuss, and plan their future care with health professionals. Numerous policy documents recommend that ACP should be available to all with life-limiting illness.

Method:

Forty patients with recurrent progressive cancer completed one or more ACP discussions with a trained planning mediator using a standardized topic guide. Fifty-two interviews were transcribed verbatim and analyzed for qualitative thematic content.

Results:

Most patients had not spoken extensively to health professionals or close persons about the future. Their concerns related to experiencing distressing symptoms or worrying how family members would cope. Some patients wished for more accurate information and were unaware of their options for care. Many felt it was doctors' responsibility to initiate such discussions, but perceived that their doctors were reluctant to do so. However, some patients felt that the time was not yet right for these conversations.

Significance of results:

This article reports on the recorded content of ACP discussions. The extent to which patients want to engage in ACP is variable, and support and training are needed for health professionals to initiate such discussions. Our findings do not fully support the current United Kingdom policy of introducing ACP early in life-threatening disease.

Keywords

ACPEnd of lifeFuture careAdvance decisionsPalliative careTerminal illness
Type
Original Articles
Information
Palliative & Supportive Care , Volume 9 , Issue 1 , March 2011 , pp. 73 - 79
Copyright
Copyright © Cambridge University Press 2011

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Barnes, K., Jones, L., Tookman, A., et al. (2007). Acceptability of an advance care planning interview schedule: A focus group study. Palliative Medicine, 21, 23–28.CrossRefGoogle ScholarPubMed
Bravo, G., Dubois, M.F. & Wagneur, B. (2008). Assessing the effectiveness of interventions to promote advance directives among older adults: A systematic review and multi-level analysis. Social Science and Medicine, 67, 1122–1132.Google Scholar
Curtis, J.R., Patrick, D.L., Caldwell, E.S., et al. (2000). Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians. Archives of Internal Medicine, 160, 1690–1696.Google Scholar
Davison, S.N. & Simpson, C. (2006). Hope and advance care planning in patients with end stage renal disease: Qualitative interview study. British Medical Journal, 333, 886.Google Scholar
Department of Health. (2007). Cancer Reform Strategy. London: Crown.Google Scholar
Department of Health. (2008). End of Life Care Strategy - Promoting High Quality Care for All Adults at the End of Life. London: Crown.Google Scholar
Gott, M., Gardiner, C., Small, N., et al. (2009). Barriers to advance care planning in chronic obstructive pulmonary disease. Palliative Medicine, 23, 642–648.Google Scholar
Horne, G., Seymour, J. & Shepherd, K. (2006). Advance care planning for patients with inoperable lung cancer. International Journal of Palliative Nursing, 12, 172–178.CrossRefGoogle ScholarPubMed
Jezewski, M., Meeker, M. & Schrader, M. (2003). Voices of oncology nurses: What is needed to assist patients with advanced directives. Cancer Nursing, 26, 105–112.Google Scholar
Johnston, S.C., Pfeifer, M.P. & McNutt, R. (1995). The discussion about advance directives. Patient and physician opinions regarding when and how it should be conducted. Archives of Internal Medicine, 155, 1025–1030.CrossRefGoogle ScholarPubMed
Morrison, R.S., Chichin, E., Carter, J., et al. (2005). The effect of a social work intervention to enhance advance care planning documentation in the nursing home. Journal of the American Geriatric Society, 53, 290–294.CrossRefGoogle ScholarPubMed
Morrison, R.S. & Meier, D.E. (2004). High rates of advance care planning in New York City's elderly population. Archives of Internal Medicine, 164, 2421–2426.Google Scholar
Munday, D., Petrova, M. & Dale, J. (2009). Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England. British Medical Journal, 339, 214–218.Google Scholar
NHS End of Life Care Programme. (2008). Advance Care Planning: A Guide for Health and Social Care Staff. London: National Health Service.Google Scholar
Pearlman, R.A., Starks, H., Cain, K.C., et al. (2005). Improvements in advance care planning in the Veterans Affairs System: results of a multifaceted intervention. Archives of Internal Medicine, 165, 667–674.Google Scholar
Perry, E., Swartz, R. & Smith–Wheelock, L. (1996). Why is it difficult for staff to discuss advance directives with chronic dialysis patients? Journal of the American Society of Nephrology, 7, 2160–2170.Google Scholar
Prommer, E.E. (2010). Using the values-based history to fine-tune advance care planning for oncology patients. Journal of Cancer Education, 25, 66–69.Google Scholar
Ratner, E., Norlander, L. & McSteen, K. (2001). Death at home following a targeted advance care planning process at home: The kitchen table discussion. Journal of the American Geriatric Society, 49, 778–781.CrossRefGoogle ScholarPubMed
Ritchie, J. & Lewis, J. (2005). Qualitative Research Practice: A Guide for Social Science Students and Researchers. London: Sage Publications.Google Scholar
Rosenfeld, K.E., Wenger, N.S. & Kagawa-Singer, M. (2000). End of life decision making: A qualitative study of elderly individuals. Journal of General Internal Medicine, 15, 620–625.Google Scholar
Royal College of Physicians. (2009). Advance Care Planning – National Guidelines. Concise Guidance to Good Practice. A Series of Evidence-Based Guidelines for Good Clinical Management.Google Scholar
Schickedanz, A.D., Schillinger, D., Landefeld, C.S., et al. (2009). A clinical framework for improving the advance care planning process: Start with patients' self-identified barriers. Journal of the American Geriatric Society, 57, 31–39.CrossRefGoogle ScholarPubMed
Schwartz, C., Lennes, I., Hammes, B., et al. (2003) Honing an advance care planning intervention using qualitative analysis: The Living Well interview. Journal of Palliative Medicine, 6, 593–603.CrossRefGoogle ScholarPubMed
Singer, P.A., Martin, D.K., Lavery, J.V., et al. (1998). Reconceptualizing advance care planning from the patient's perspective. Archives of Internal Medicine, 158, 879–884.Google Scholar
Singer, P.A., Martin, D.K. & Merrijoy, K. (1999). Quality end of life care: patients' perspectives. Journal of the American Medical Association, 281, 163–168.Google Scholar
Terrence Higgins Trust and King's College London. (2000). Living Will, 4th Ed.Google Scholar
Voltz, R., Akabayashi, A., Reese, C., et al. (1998). End of life decisions and advance directives in palliative care: A cross cultural survey of patients and health-care professionals. Journal of Pain Symptom Management, 16, 153–162.CrossRefGoogle ScholarPubMed
Walling, A., Lorenz, K.A., Dy, S.M., et al. (2008). Evidence-based recommendations for information and care planning in cancer care. Journal of Clinical Oncology, 26, 3896–3902.Google Scholar
Zweibel, N.R. & Cassel, C.K. (1989). Treatment choices at the end of life: A comparison of decisions by older patients and their physician-selected proxies. Gerontologist, 29, 615–621.Google Scholar