Funding: This project was financed by the Thyne Reid Foundation.
Informed consent and medical ordeal: a qualitative study
Article first published online: 3 SEP 2008
© 2008 The Authors Journal compilation © 2008 Royal Australasian College of Physicians
Internal Medicine Journal
Volume 38, Issue 8, pages 624–628, August 2008
How to Cite
Little, M., Jordens, C. F. C., McGrath, C., Montgomery, K., Lipworth, W. and Kerridge, I. (2008), Informed consent and medical ordeal: a qualitative study. Internal Medicine Journal, 38: 624–628. doi: 10.1111/j.1445-5994.2008.01700.x
Potential conflicts of interest: None
- Issue published online: 3 SEP 2008
- Article first published online: 3 SEP 2008
- Received 8 May 2007; accepted 22 September 2007.
- autologous stem cell transplantation;
- haematological malignancy;
- extreme treatment;
- medical communication;
- informed consent
Background: Informed consent is a mainstay of clinical practice, with both moral and legal forces. Material disclosure about extreme treatments, however, is unlikely to convey the full impact of the experience of treatment. Informed consent may be flawed under such circumstances. The aims of this study were to compare expressed satisfaction with pretreatment information to satisfaction after experiencing autologous stem cell transplantation for recurrent lymphoma.
Methods: A qualitative, narrative-based cohort study was conducted in a bone-marrow transplant unit of a teaching hospital at Westmead Hospital, Sydney, Australia. The cohort consisted of 10 transplant recipients and 9 of their nominated lay carers. The outcome measure was satisfaction expressed in narrative interviews at the time of transplantation and 3 months later. We used discourse-analytic techniques to examine the narratives.
Results: Both patients and carers expressed high satisfaction with the information given by individual clinicians and by speakers at a formal Information Day held before transplantation. At the first interview, neither patients nor carers commented much on the forthcoming ordeal of chemotherapy and bone marrow ablation, although all patients had undergone previous chemotherapy. At the second interview, the ordeal dominated the narratives and retrospective dissatisfaction with information was common.
Conclusion: This study suggests that information about treatment theories and protocols can be satisfactorily communicated, but personal experience of suffering defies communication. This finding has serious implications for the practices involved in obtaining informed consent and for the very notion of informed consent.