Journal of Bioethical Inquiry

, Volume 10, Issue 1, pp 67–77 | Cite as

Trouble in the Gap: A Bioethical and Sociological Analysis of Informed Consent for High-Risk Medical Procedures

  • Christopher F. C. Jordens
  • Kathleen Montgomery
  • Rowena Forsyth
Original Research

Abstract

Concerns are frequently raised about the extent to which formal consent procedures actually lead to “informed” consent. As part of a study of consent to high-risk medical procedures, we analyzed in-depth interviews with 16 health care professionals working in bone-marrow transplantation in Sydney, Australia. We find that these professionals recognize and act on their responsibility to inform and educate patients and that they expect patients to reciprocate these efforts by demonstrably engaging in the education process. This expectation is largely implicit, however, and when it is not met, this can give rise to trouble that can have adverse consequences for patients, physicians, and relationships within the clinic. We revisit the concept of the sick role to formalize this new role expectation, and we argue that “informed” consent is a process that is usually incomplete, despite trappings and assumptions that help to create the illusion of completeness.

Keywords

Informed consent Sick role Bioethics Sociology, medical Bone marrow transplantation Qualitative research Australia 

References

  1. American Medical Association. 1981 (updated 2006). Opinions on practice matters: 8.08—informed consent. http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion808.page?.
  2. Beauchamp, T., and J. Childress. 2009. Principles of biomedical ethics, 6th edition. New York: Oxford University Press.Google Scholar
  3. Bone Marrow Transplant Network NSW. 2006. Allogeneic bone marrow transplant: A patient’s guide. Sydney: Bone Marrow Transplant Network NSW.Google Scholar
  4. Bosk, C. 2010. Bioethics, raw and cooked: Extraordinary conflict and everyday practice. Journal of Health and Social Behavior 51(suppl): S133–S146.PubMedCrossRefGoogle Scholar
  5. Cockerham, W.C., and F.J. Ritchey. 1997. Dictionary of medical sociology. Westport: Greenwood Press.Google Scholar
  6. DiMatteo, R., P. Giordani, H. Lepper, and T. Croghan. 2002. Patient adherence and medical treatment outcomes: A meta-analysis. Medical Care 40(9): 794–811.PubMedCrossRefGoogle Scholar
  7. DiMatteo, R., K. Haskard, and S. Williams. 2007. Health beliefs, disease severity, and patient adherence: A meta-analysis. Medical Care 45(6): 521–528.PubMedCrossRefGoogle Scholar
  8. Ferguson, P., C. Jordens, and N. Gilroy. 2010. Patient and family education in HSCT: Improving awareness of respiratory virus infection and influenza vaccination. A descriptive study and brief intervention. Bone Marrow Transplantation 45(4): 656–661.PubMedCrossRefGoogle Scholar
  9. Flory, J., and E. Emanuel. 2004. Interventions to improve research participants’ understanding of informed consent in research: A systematic review. The Journal of the American Medical Association 292(13): 1593–1601.CrossRefGoogle Scholar
  10. Forsyth, R., C. Scanlan, S. Carter, C. Jordens, and I. Kerridge. 2011. Decision making in a crowded room: The relational significance of social roles in decisions to proceed with allogeneic stem cell transplantation. Qualitative Health Research 21(9): 1260–1272.PubMedCrossRefGoogle Scholar
  11. Kerridge, I., M. Lowe, and C. Stewart. 2009. Ethics and law for the health professions, 3rd edition. Sydney: The Federation Press.Google Scholar
  12. Little, M., C.F. Jordens, C. McGrath, K. Montgomery, W. Lipworth, and I. Kerridge. 2008. Informed consent and medical ordeal: A qualitative study. Internal Medicine Journal 38(8): 624–628.PubMedCrossRefGoogle Scholar
  13. Miles, M., and M. Huberman. 1994. Qualitative data analysis, 2nd edition. Thousand Oaks: Sage.Google Scholar
  14. National Health and Medical Research Council (NHMRC). 2004a. Communicating with patients: Advice for medical practitioners. Canberra: NHMRC.Google Scholar
  15. National Health and Medical Research Council (NHMRC). 2004b. General guidelines for medical practitioners on providing information to patients. Canberra: NHMRC.Google Scholar
  16. Parsons, T. 1951. Illness and the role of the physicians: A sociological perspective. The American Journal of Orthopsychiatry 21(3): 452–460.PubMedCrossRefGoogle Scholar
  17. Parsons, T. 1975. The sick role and the role of the physician reconsidered. The Milbank Memorial Fund Quarterly: Health and Society 53(3): 257–278.CrossRefGoogle Scholar
  18. Schenker, Y., and A. Meisel. 2011. Informed consent in clinical care: Practical considerations in the effort to achieve ethical goals. The Journal of the American Medical Association 305(11): 1130–1131.CrossRefGoogle Scholar
  19. Schenker, Y., A. Fernandez, R. Sudore, and D. Schillinger. 2011. Interventions to improve patient comprehension in informed consent for medical and surgical procedures: A systematic review. Medical Decision Making 31(1): 151–173.PubMedCrossRefGoogle Scholar
  20. Varul, M.Z. 2010. Talcott Parsons, the sick role and chronic illness. Body and Society 16(2): 72–94.CrossRefGoogle Scholar
  21. Veterans Health Administration. 2009. VHA handbook 1004.01: Informed consent for clinical treatments and procedures. http://www.va.gov/vhapublications/ViewPublication.asp?pub_ID=2055.
  22. Williams, S. 2005. Parsons revisited: From the sick role to…? Health 9(2): 123–144.PubMedGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  • Christopher F. C. Jordens
    • 1
  • Kathleen Montgomery
    • 2
  • Rowena Forsyth
    • 1
  1. 1.Centre for Values, Ethics and the Law in MedicineThe University of SydneySydneyAustralia
  2. 2.School of Business Administration, Anderson Graduate School of ManagementUniversity of California, RiversideRiversideUSA

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