Hostname: page-component-78c5997874-4rdpn Total loading time: 0 Render date: 2024-11-19T18:45:27.759Z Has data issue: false hasContentIssue false
  • English
  • Français

Decisional control preferences of patients with advanced cancer receiving palliative care

Published online by Cambridge University Press:  02 November 2017

Colombe Tricou ,
Sriram Yennu ,
Murielle Ruer ,
Eduardo Bruera  and
Marilène Filbet
Colombe Tricou
Affiliation:
Department of Palliative Medicine, Centre Hospitalier de Lyon-Sud, Hospices Civils de Lyon, Pierre-Bénite, France
Sriram Yennu
Affiliation:
Department of Palliative Care and Rehabilitation Medicine, University of Texas MD Anderson Cancer Center, Houston, Texas, USA
Murielle Ruer
Affiliation:
Department of Palliative Medicine, Centre Hospitalier de Lyon-Sud, Hospices Civils de Lyon, Pierre-Bénite, France
Eduardo Bruera
Affiliation:
Department of Palliative Care and Rehabilitation Medicine, University of Texas MD Anderson Cancer Center, Houston, Texas, USA
Marilène Filbet*
Affiliation:
Department of Palliative Medicine, Centre Hospitalier de Lyon-Sud, Hospices Civils de Lyon, Pierre-Bénite, France
*
Address correspondence and reprint requests to: Marilène Filbet, Department of Palliative Medicine, Centre Hospitalier de Lyon-Sud, Hospices Civils de Lyon, 165 Chemin du Grand Revoyet, 69310 Pierre-Bénite, France. E-mail: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Understanding patients' decisional control preferences (DCPs) is important to improving the quality of care and the satisfaction of patients who have advanced cancer with their care. In addition to passive decisional control (i.e., the patient prefers his/her doctor or family caregiver to make a decision on their behalf) and active decisional control (i.e., the patient decides alone), shared decisional control, where patients and caregivers decide together, could be more appropriate. The primary aim of our study was to describe the decision-making process and the DCPs of patients with advanced cancer receiving palliative care in France.

Method:

We conducted a prospective survey with advanced cancer patients referred to a palliative care team in an outpatient setting. We collected information about patients' demographic and clinical characteristics using the Decision Control Preference Scale, the Satisfaction with the Decisions and Care questionnaire, and the Understanding of Illness questionnaire.

Results:

A total of 200 patients were evaluable. The median age was 63.5 years and 53.5% female. The cancers most commonly represented were gastrointestinal and breast. A total of 72 patients (36.2%) preferred active decisional control, 52 (26.1%) preferred shared decisional control, and 75 (37.7%) preferred passive decisional control. Younger age (p = 0.003), higher education (p < 0.001), and employment status (p = 0.046) were found to be associated with active or shared DCPs. Some 82% of patients were satisfied with the decision-making process, 35% of whom expressed wishes that did not match the actual decision-making process. Only 23% of patients thought they could be cured of their illness, and 47% thought that their treatment would “get rid of ” their disease.

Significance of Results:

The decision-making processes are shared in the three models of DCPs in our cohort of French patients with advanced cancer. Further prospective studies are needed.

Keywords

Palliative careAdvanced cancerDecisional control preferencesDecision-making process
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Issue 5 , October 2018 , pp. 544 - 551
Copyright
Copyright © Cambridge University Press 2017 

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

Blackhall, L. J., Frank, G., Murphy, S., et al. (2001). Bioethics in a different tongue: The case of truth-telling. Journal of Urban Health, 78(1), 59–71.Google Scholar
Bruera, E. (2006). Process and content of decision making by advanced cancer patients. Journal of Clinical Oncology, 24(7), 1029–1030.Google Scholar
Bruera, E., Sweeney, C., Calder, K., et al. (2001). Patient preferences versus physician perceptions of treatment decisions in cancer care. Journal of Clinical Oncology, 18(11), 2883–2885.Google Scholar
Bruera, E., Willey, J. S., Palmer, J. L., et al. (2002). Treatment decisions for breast carcinoma: Patient preferences and physician perceptions. Cancer, 94(7), 2076–2080.Google Scholar
Burns, C. M., Broom, D. H., Smith, W. T., et al. (2007). Fluctuating awareness of treatment goals among patients and their caregivers: A longitudinal study of a dynamic process. Supportive Care in Cancer, 15(2), 187–196.Google Scholar
Butow, P. N., Maclean, M., Dunn, S. M., et al. (1997). The dynamics of change: Cancer patients' preferences for information, involvement and support. Annals of Oncology, 8(9), 857–863.Google Scholar
Charles, C., Gafni, A. & Whelan, T. (1997). Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science & Medicine, 44(5), 681–692.Google Scholar
Davison, B. J., Parker, P. A. & Goldenberg, S. U. (2004). Patients' preferences for communicating a prostate cancer diagnosis and participating in medical decision-making. BJU International, 93(1), 47–51.Google Scholar
Degner, L. F. & Sloan, J. A. (1992). Decision making during serious illness: What role do patients really want to play? Journal of Clinical Epidemiology, 45(9), 941–950.Google Scholar
Degner, L. F., Kristjanson, L. G., Bowman, D., et al. (1997). Information needs and decisional preferences in women with breast cancer. The Journal of the American Medical Association, 277(18), 1485–1492.Google Scholar
El-Jawahri, A., Traeger, L., Park, E. R., et al. (2014). Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer. Cancer, 120(2), 278–285.Google Scholar
Ferguson, M. & Rodrigues, G. (2013). Bridging the communication gap between oncologists and patients receiving palliative therapies. Annals of Palliative Medicine, 2(4), 197–201.Google Scholar
Florin, J., Ehrenberg, A. & Ehnfors, M. (2006). Patient participation in clinical decision-making in nursing: A comparative study of nurses' and patients' perceptions. Journal of Clinical Nursing, 15(12), 1498–1508.Google Scholar
Gafni, A., Charles, C. & Whelan, T. (1998). The physician–patient encounter: The physician as a perfect agent for the patient versus the informed treatment decision-making model. Social Science & Medicine, 47(3), 347–354.Google Scholar
Gattellari, M., Butow, P. N. & Tattersall, M. H. (2001). Sharing decisions in cancer care. Social Science & Medicine, 52(12), 1865–1878.Google Scholar
Ghane, A., Huynh, H. P., Andrews, S. E., et al. (2014). The relative importance of patients' decisional control preferences and experiences. Psychology & Health, 29(10), 1105–1118.Google Scholar
Hagerty, R. G., Butow, P. N. & Ellis, P. M. (2005). Communicating prognosis in cancer care: A systematic review of the literature. Annals of Oncology, 16(7), 1005–1053.Google Scholar
HAS (2002). Loi N° 2002-303 du 4 mars 2002. Available from https://www.legifrance.gouv.fr/affichTexte.do?cidTexte=JORFTEXT000000227015.Google Scholar
Janz, N. K., Wren, P. A., Copeland, L. A., et al. (2004). Patient–physician concordance: Preferences, perceptions, and factors influencing the breast cancer surgical decision. Journal of Clinical Oncology, 22(15), 3091–3098.Google Scholar
Kelley, A. S., Wenger, N. S. & Sarkisian, C. A. (2010). Opiniones: End-of-life care preferences and planning of older Latinos. Journal of the American Geriatrics Society, 58(6), 1109–1116.Google Scholar
Lechner, S., Herzog, W., Boehlen, F., et al. (2016). Control preferences in treatment decisions among older adults: Results of a large population-based study. Journal of Psychosomatic Research, 86, 28–33.Google Scholar
Levinson, W., Kao, A., Kuby, A., et al. (2005). Not all patients want to participate in decision making: A national study of public preferences. Journal of General Internal Medicine, 20(6), 531–535.Google Scholar
Mollica, M. A., Underwood, W. 3rd, Homish, G. G., et al. (2016). Spirituality is associated with better prostate cancer treatment decision making experiences. Journal of Behavioral Medicine, 39(1), 161–169.Google Scholar
Moreau, A., Carol, L., Dedianne, M. C., et al. (2012). What perceptions do patients have of decision making (DM)? Toward an integrative patient-centered care model: A qualitative study using focus-group interviews. Patient Education and Counseling, 87(2), 206–211.Google Scholar
Nierop-van Baalen, C., Grypdonck, M., van Hecke, A, et al. (2016). Hope dies last … A qualitative study into the meaning of hope for people with cancer in the palliative phase. European Journal of Cancer Care, 25(4), 570–579.Google Scholar
Noguera, A., Yennurajalingam, S., Torres-Vigil, I., et al. (2014). Decisional control preferences, disclosure of information preferences, and satisfaction among Hispanic patients with advanced cancer. Journal of Pain and Symptom Management, 47(5), 896–905.Google Scholar
Nolan, M. T., Hughes, M., Narendra, D. P., et al. (2005). When patients lack capacity: The roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions. Journal of Pain and Symptom Management, 30(4), 342–353.Google Scholar
Palma, A., Cartes, F., González, M., et al. (2014). Information disclosure and decision making preferences of patients with advanced cancer in a pain and palliative care unit in Chile [in Spanish]. Revista Medica de Chile, 142(1), 48–54.Google Scholar
Pardon, K., Deschepper, R., Stichele, R. V., et al. (2009). Preferences of advanced lung cancer patients for patient-centred information and decision-making: A prospective multicentre study in 13 hospitals in Belgium. Patient Education and Counseling, 77(3), 421–429.Google Scholar
Rhondali, W., Berthiller, J., Hui, D., et al. (2013). Barriers to research in palliative care in France. BMJ Supportive & Palliative Care. doi: 10.1136/bmjspcare-2012-000360. Epub ahead of print Apr 19.Google Scholar
Robinson, A. & Thomson, R. (2001). Variability in patient preferences for participating in medical decision making: Implication for the use of decision support tools. Quality in Health Care, 10(Suppl. 1), i34–i38.Google Scholar
Shin, D. W., Cho, J., Roter, D. L., et al. (2013). Preferences for and experiences of family involvement in cancer treatment decision-making: Patient–caregiver dyads study. Psycho-Oncology, 22(11), 2624–2631.Google Scholar
Shin, D. W., Cho, J., Roter, D. L., et al. (2016). Attitudes toward family involvement in cancer treatment decision making: The perspectives of patients, family caregivers, and their oncologists. Psycho-Oncology, 26(6), 770–778.Google Scholar
Shrank, W. H., Kutner, J. S., Richardson, T., et al. (2005). Focus group findings about the influence of culture on communication preferences in end-of-life care. Journal of General Internal Medicine, 20(8), 703–709.Google Scholar
Singh, J. A., Sloan, J. A., Atherton, P. J., et al. (2010). Preferred roles in treatment decision making among patients with cancer: A pooled analysis of studies using the Control Preferences Scale. The American Journal of Managed Care, 16(9), 688–696.Google Scholar
Smith, T. J., Dow, L. A., Virago, E. A., et al. (2011). A pilot trial of decision aids to give truthful prognostic and treatment information to chemotherapy patients with advanced cancer. The Journal of Supportive Oncology, 9(2), 79–86.Google Scholar
Sprangers, M. A., Cull, A., Groenvold, M., et al. (1998). The European Organization for Research and Treatment of Cancer approach to developing questionnaire modules: An update and overview. EORTC Quality of Life Study Group. Quality of Life Research, 7(4), 291–300.Google Scholar
Strull, W. M., Lo, B. & Charles, G. (1984). Do patients want to participate in medical decision making? The Journal of the American Medical Association, 252(21), 2990–2994.Google Scholar
Temel, J. S., Greer, J. A., Admane, S., et al. (2011). Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: Results of a randomized study of early palliative care. Journal of Clinical Oncology, 29(17), 2319–2326.Google Scholar
Vos, M. S. & de Haes, J. C. (2007). Denial in cancer patients, an explorative review. Psycho-Oncology, 16(1), 12–25.Google Scholar
World Health Organization (2012). Definition of Palliative Care. Geneva: World Health Organization. Available from http://www.who.int/cancer/palliative/definition/en/.Google Scholar
Yennurajalingam, S., Parsons, H. A., Duarte, E. R., et al. (2013). Decisional control preferences of Hispanic patients with advanced cancer from the United States and Latin America. Journal of Pain and Symptom Management, 46(3), 376–385.Google Scholar