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Informed consent and medical ordeal: a qualitative study
M Little1, C F C Jordens, C McGrath
1Centre for Values, Ethics and the Law in Medicine, Faculty of Medicine, University of Sydney, Sydney, New South Wales, Australia. milesl@ozemail.com.au
Internal Medicine Journal
|September 24, 2008
Summary
Patients and carers were satisfied with pre-transplant information, but retrospective dissatisfaction arose after experiencing autologous stem cell transplantation. The reality of suffering undermined informed consent effectiveness.
Area of Science:
- Hematology
- Oncology
- Psychosocial Oncology
Background:
- Informed consent is crucial in clinical practice, yet conveying the full impact of extreme treatments like autologous stem cell transplantation (ASCT) is challenging.
- Disclosure of treatment protocols may not adequately prepare patients for the lived experience, potentially compromising informed consent.
- This study addresses the gap between pre-treatment information and post-treatment patient/carer satisfaction after ASCT for recurrent lymphoma.
Purpose of the Study:
- To compare patient and lay carer satisfaction with pretreatment information versus their satisfaction after undergoing ASCT.
- To evaluate the adequacy of informed consent in the context of high-intensity cancer therapies.
- To explore the impact of the ASCT experience on perceptions of information provided.
Main Methods:
- A qualitative, narrative-based cohort study involving 10 ASCT recipients and 9 lay carers.
- Data collected through narrative interviews at the time of transplantation and 3 months post-transplant.
- Discourse-analytic techniques applied to examine patient and carer narratives.
Main Results:
- High initial satisfaction with information provided by clinicians and formal information sessions was reported by both patients and carers.
- Patients and carers initially underemphasized the severity of chemotherapy and bone marrow ablation.
- At 3 months post-transplant, the severe experience of ASCT dominated narratives, leading to common retrospective dissatisfaction with the information received.
Conclusions:
- While factual information about treatment protocols can be communicated effectively, the subjective experience of suffering is difficult to convey.
- The findings raise significant questions about the limitations of current informed consent practices for extreme medical interventions.
- Rethinking the notion and process of informed consent is necessary to better align patient expectations with treatment realities.
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