Skip to main content
NCBI home page
CMAJ : Canadian Medical Association Journal logoLink to CMAJ : Canadian Medical Association Journal
. 1997 Aug 15;157(4):383–389.

A role for the sick role: Patient preferences regarding information and participation in clinical decision-making

A M Stiggelbout 1, G M Kiebert 1
PMCID: PMC1243812  PMID: 9275945

Abstract

OBJECTIVE: To assess whether patient preferences regarding information and participation in decision-making about treatment options are related to patient characteristics and the context of the decision. Other studies have compared decision-making preferences in patients with cancer and healthy subjects, or in different contexts among patients in the same group. This study combined these designs. DESIGN: Questionnaire completed by the subjects. SETTING: Outpatient clinic of a university hospital. PARTICIPANTS: A consecutive sample of 55 patients with cancer treated at a radiotherapy clinic, 53 persons accompanying them, a consecutive sample of 53 patients visiting a surgical outpatient clinic for a nonmalignant condition and 36 persons accompanying them. MAIN MEASURES: Preferences regarding information and participation in decision-making in general and with respect to 4 vignettes that described different diseases of varying seriousness, varying treatment options and side effects. RESULTS: Older patients and men were more likely to let the physician make decisions regarding their treatment. Patients, as compared with nonpatients (their companions), were more likely to prefer a passive role regarding treatment decisions. No differences were seen between patients with cancer and patients with nonmalignant conditions. Also, no effect was observed in relation to the decision-making situations described in the vignettes. Of the patients who preferred more information, a substantial proportion still preferred a passive decision-making role. CONCLUSION: The lack of strong predictors of a preferred decision-making role implies that clinicians need to assess every patient individually to determine what role he or she prefers. The finding that the patients preferred a more passive role than their companions suggests that the "sick role" influences the preference regarding participation more strongly than the type of decision to be made or the presence of a life-threatening disease. This hypothesized shift in preference among subjects who are sick implies that these patients need encouragement to participate.

Full Text

The Full Text of this article is available as a PDF (210.0 KB).

Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Blanchard C. G., Labrecque M. S., Ruckdeschel J. C., Blanchard E. B. Information and decision-making preferences of hospitalized adult cancer patients. Soc Sci Med. 1988;27(11):1139–1145. doi: 10.1016/0277-9536(88)90343-7. [DOI] [PubMed] [Google Scholar]
  2. Brody D. S., Miller S. M., Lerman C. E., Smith D. G., Caputo G. C. Patient perception of involvement in medical care: relationship to illness attitudes and outcomes. J Gen Intern Med. 1989 Nov-Dec;4(6):506–511. doi: 10.1007/BF02599549. [DOI] [PubMed] [Google Scholar]
  3. Brody D. S. The patient's role in clinical decision-making. Ann Intern Med. 1980 Nov;93(5):718–722. doi: 10.7326/0003-4819-93-5-718. [DOI] [PubMed] [Google Scholar]
  4. Cassileth B. R., Zupkis R. V., Sutton-Smith K., March V. Information and participation preferences among cancer patients. Ann Intern Med. 1980 Jun;92(6):832–836. doi: 10.7326/0003-4819-92-6-832. [DOI] [PubMed] [Google Scholar]
  5. Catalan J., Brener N., Andrews H., Day A., Cullum S., Hooker M., Gazzard B. Whose health is it? Views about decision-making and information-seeking from people with HIV infection and their professional carers. AIDS Care. 1994;6(3):349–356. doi: 10.1080/09540129408258647. [DOI] [PubMed] [Google Scholar]
  6. Deber R. B. Physicians in health care management: 8. The patient-physician partnership: decision making, problem solving and the desire to participate. CMAJ. 1994 Aug 15;151(4):423–427. [PMC free article] [PubMed] [Google Scholar]
  7. Degner L. F., Sloan J. A. Decision making during serious illness: what role do patients really want to play? J Clin Epidemiol. 1992 Sep;45(9):941–950. doi: 10.1016/0895-4356(92)90110-9. [DOI] [PubMed] [Google Scholar]
  8. Ende J., Kazis L., Ash A., Moskowitz M. A. Measuring patients' desire for autonomy: decision making and information-seeking preferences among medical patients. J Gen Intern Med. 1989 Jan-Feb;4(1):23–30. doi: 10.1007/BF02596485. [DOI] [PubMed] [Google Scholar]
  9. Greenfield S., Kaplan S., Ware J. E., Jr Expanding patient involvement in care. Effects on patient outcomes. Ann Intern Med. 1985 Apr;102(4):520–528. doi: 10.7326/0003-4819-102-4-520. [DOI] [PubMed] [Google Scholar]
  10. Hack T. F., Degner L. F., Dyck D. G. Relationship between preferences for decisional control and illness information among women with breast cancer: a quantitative and qualitative analysis. Soc Sci Med. 1994 Jul;39(2):279–289. doi: 10.1016/0277-9536(94)90336-0. [DOI] [PubMed] [Google Scholar]
  11. Jones T. V., Gerrity M. S., Earp J. Written case simulations: do they predict physicians' behavior? J Clin Epidemiol. 1990;43(8):805–815. doi: 10.1016/0895-4356(90)90241-g. [DOI] [PubMed] [Google Scholar]
  12. Kaplan S. H., Gandek B., Greenfield S., Rogers W., Ware J. E. Patient and visit characteristics related to physicians' participatory decision-making style. Results from the Medical Outcomes Study. Med Care. 1995 Dec;33(12):1176–1187. doi: 10.1097/00005650-199512000-00002. [DOI] [PubMed] [Google Scholar]
  13. Kaplan S. H., Greenfield S., Ware J. E., Jr Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Med Care. 1989 Mar;27(3 Suppl):S110–S127. doi: 10.1097/00005650-198903001-00010. [DOI] [PubMed] [Google Scholar]
  14. Laine C., Davidoff F. Patient-centered medicine. A professional evolution. JAMA. 1996 Jan 10;275(2):152–156. [PubMed] [Google Scholar]
  15. Llewellyn-Thomas H. A., McGreal M. J., Thiel E. C., Fine S., Erlichman C. Patients' willingness to enter clinical trials: measuring the association with perceived benefit and preference for decision participation. Soc Sci Med. 1991;32(1):35–42. doi: 10.1016/0277-9536(91)90124-u. [DOI] [PubMed] [Google Scholar]
  16. Richards M. A., Ramirez A. J., Degner L. F., Fallowfield L. J., Maher E. J., Neuberger J. Offering choice of treatment to patients with cancers. A review based on a symposium held at the 10th annual conference of The British Psychosocial Oncology Group, December 1993. Eur J Cancer. 1995;31A(1):112–116. doi: 10.1016/0959-8049(94)00478-n. [DOI] [PubMed] [Google Scholar]
  17. Strull W. M., Lo B., Charles G. Do patients want to participate in medical decision making? JAMA. 1984 Dec 7;252(21):2990–2994. [PubMed] [Google Scholar]
  18. Sutherland H. J., Llewellyn-Thomas H. A., Lockwood G. A., Tritchler D. L., Till J. E. Cancer patients: their desire for information and participation in treatment decisions. J R Soc Med. 1989 May;82(5):260–263. doi: 10.1177/014107688908200506. [DOI] [PMC free article] [PubMed] [Google Scholar]

Articles from CMAJ: Canadian Medical Association Journal are provided here courtesy of Canadian Medical Association

RESOURCES