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.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
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?.
Beauchamp, T., and J. Childress. 2009. Principles of biomedical ethics, 6th edition. New York: Oxford University Press.
Bone Marrow Transplant Network NSW. 2006. Allogeneic bone marrow transplant: A patient’s guide. Sydney: Bone Marrow Transplant Network NSW.
Bosk, C. 2010. Bioethics, raw and cooked: Extraordinary conflict and everyday practice. Journal of Health and Social Behavior 51(suppl): S133–S146.
Cockerham, W.C., and F.J. Ritchey. 1997. Dictionary of medical sociology. Westport: Greenwood Press.
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.
DiMatteo, R., K. Haskard, and S. Williams. 2007. Health beliefs, disease severity, and patient adherence: A meta-analysis. Medical Care 45(6): 521–528.
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.
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.
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.
Kerridge, I., M. Lowe, and C. Stewart. 2009. Ethics and law for the health professions, 3rd edition. Sydney: The Federation Press.
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.
Miles, M., and M. Huberman. 1994. Qualitative data analysis, 2nd edition. Thousand Oaks: Sage.
National Health and Medical Research Council (NHMRC). 2004a. Communicating with patients: Advice for medical practitioners. Canberra: NHMRC.
National Health and Medical Research Council (NHMRC). 2004b. General guidelines for medical practitioners on providing information to patients. Canberra: NHMRC.
Parsons, T. 1951. Illness and the role of the physicians: A sociological perspective. The American Journal of Orthopsychiatry 21(3): 452–460.
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.
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.
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.
Varul, M.Z. 2010. Talcott Parsons, the sick role and chronic illness. Body and Society 16(2): 72–94.
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.
Williams, S. 2005. Parsons revisited: From the sick role to…? Health 9(2): 123–144.
Acknowledgements
We are very grateful to the interviewees, who gave generously of their time to participate. We also acknowledge with thanks the important contributions of Camilla Scanlan, Ian Kerridge, Cameron Stewart, and Stacy Carter. Amalya Oliver, Wendy Lipworth, and the JBI’s handling editor for this article, Rob Irvine, offered valuable comments that helped to improve the paper.
Statement of Competing Interests
No competing interests to declare.
Details of Funding Support
The authors disclose receipt of the following financial support for the research and/or authorship of this article: the National Health and Medical Research Council (NHMRC, project no. 457439) and the University of California Academic Senate. Kathleen Montgomery’s contribution to the study was supported by the University of California Academic Senate.
Author information
Authors and Affiliations
Corresponding author
Additional information
This article is part of an NHMRC-funded project (no. 457439), “Difficult Decisions: A Critical Analysis of Consent to High-Risk Medical Treatments; Examination of Legal and Ethical Limitations.”
Rights and permissions
About this article
Cite this article
Jordens, C.F.C., Montgomery, K. & Forsyth, R. Trouble in the Gap: A Bioethical and Sociological Analysis of Informed Consent for High-Risk Medical Procedures. Bioethical Inquiry 10, 67–77 (2013). https://doi.org/10.1007/s11673-012-9414-7
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11673-012-9414-7