“No decision about me without me” in the context of cancer multidisciplinary team meetings: a qualitative interview study

BACKGROUND: Cancer care is commonly managed by multidisciplinary teams (MDTs) who meet to discuss and agree treatment for individual patients. Patients do not attend MDT meetings but recommendations for treatments made in the meetings directly influence the decision-making process between patients and their responsible clinician. No research to-date has considered patient perspectives (or understanding) regarding MDTs or MDT meetings, though research has shown that failure to consider patient-based information can lead to recommendations that are inappropriate or unacceptable, and can consequently delay treatment. METHODS: Semi-structured interviews were conducted with current cancer patients from one cancer centre who had either upper gastrointestinal or gynaecological cancer (n = 9) and with MDT members (n = 12) from the teams managing their care. Interview transcripts were analysed thematically using Framework approach. Key themes were identified and commonalities and discrepancies within and between individual transcripts and within and between patient and team member samples were identified and examined using the constant comparative method. RESULTS: Patients had limited opportunities to input to or influence the decision-making process in MDT meetings. Key explanatory factors included that patients were given limited and inconsistent information about MDTs and MDT meetings, and that MDT members had variable definitions of patient-centredness in the context of MDTs and MDT meetings. Patients that had knowledge of medicine (through current/previous employment themselves or that of a close family member) appeared to have greater understanding and access to the MDT. Reassurance emerged as a ‘benefit’ of informing patients about MDTs and MDT meetings. CONCLUSIONS: There is a need to ensure MDT processes are both efficient and patient-centred. The operationalization of “No decision about me without me” in the context of MDT models of care – where patients are not present when recommendations for treatment are discussed - requires further consideration. Methods for ensuring that patients are actively integrated into the MDT processes are required to ensure patients have an informed choice regarding engagement, and to ensure recommendations are based on the best available patient-based and clinical evidence. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12913-014-0488-2) contains supplementary material, which is available to authorized users.