Informed consent and medical ordeal: a qualitative study

Abstract

Background Informed consent is a mainstay of clinical practice, with both moral and legal force. 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 cir-cumstances. Aims To compare expressed satisfaction with pre-treatment information to satisfaction af-ter experiencing autologous stem cell transplantation (ASCT) for recurrent lymphoma. Methods A qualitative, narrative-based cohort study has been conducted in a Teaching hospital Bone Marrow Transplant unit at Westmead Hospital, Sydney, Australia. The cohort consisted of ten transplant recipients and nine of their nominated lay carers. The Outcome measure was satisfaction expressed in narrative interviews at the time of transplantation and three 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 transplanta-tion. At the first interview, neither patients nor carers commented much on the forthcom-ing ordeal of chemotherapy and bone marrow ablation, although all patients had under-gone previous chemotherapy. At the second interview, the ordeal dominated the narratives, and retrospective dissatisfaction with information was common. Conclusions This study suggests that information about treatment theories and protocols can be satisfactorily communicated, but personal experience of suffering defies communi-cation. This finding has serious implications for the practices involved in obtaining informed consent and for the very notion of informed consent.

KEY WORDS Autologous stem cell transplantation; haematological malignancies; extreme treatment; medical communication; informed consent.