How is medical decision‐making shared? The case of haemophilia patients and doctors: the aftermath of the infected blood affair in France

Objective  This article looks at how users and doctors in France have rethought the question of shared decision‐making in the clinical field of haemophilia following a major crisis – that of the infected blood affair. Design  We did a qualitative survey based on semi‐structured interviews in three regions of France. Setting and participants  The interviews covered 31 clinical doctors of haemophilia and 31 users: 21 adult males with severe haemophilia (21/31), infected (14/21) or not (7/21) with HIV, the infected wife of one of the latter (1/31) and nine parents of young patients with severe haemophilia (9/31), either HIV positive (6/9) or negative (3/9). Results and conclusions  The results show the infected blood affair to be a major individual and collective ordeal. It has caused users and doctors to rethink their roles within clinical relationships and to develop new ways of sharing medical decision‐making. Prior to the crisis, the dominant model was based upon a distinction between the medical aspect, governed by the doctors, and the psychosocial aspect, which involved the patients and their families. Since the crisis, medicoscientific knowledge has been shared between users and doctors. This general trend nevertheless permits the existence of different patient, family and doctor profiles which in turn correspond to different notions of what a clinical decision should be. Some users remain attached to the idea of complementarity between doctors and patients (new partnership model), whilst others put doctors and patients on an equal footing (negotiation model). On the doctors’ side, whilst some still prefer the initial model for therapeutic decision‐making, the majority have reassessed their perceptions and viewpoints. A certain number believe that decisions should be made by both doctor and patient in accordance with scientific procedures (decision‐making controlled by scientific standards) or regulatory procedures (decision‐making controlled by legal standards). Yet others feel that multiple points of view are acceptable within the decision‐making process (decision‐making model as interactivity).