Fillion Emmanuelle
Sociologist at CERMES, Paris, France.
Health Expect. 2003 Sep;6(3):228-41. doi: 10.1046/j.1369-6513.2003.00244.x.
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.
We did a qualitative survey based on semi-structured interviews in three regions of France.
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).
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).
本文探讨了在经历重大危机——即受污染血液事件之后，法国的患者和医生如何重新思考血友病临床领域中的共同决策问题。
我们在法国的三个地区进行了基于半结构化访谈的定性调查。
访谈涵盖了31位血友病临床医生和31位患者：21名成年男性重度血友病患者（21/31），其中感染了HIV的有14人（14/21），未感染的有7人（7/21），后者中有一人的感染了HIV的妻子（1/31），以及9名重度血友病年轻患者的父母（9/31），其中HIV呈阳性的有6人（6/9），呈阴性的有3人（3/9）。
结果表明，受污染血液事件是一场重大的个人和集体磨难。它促使患者和医生重新思考他们在临床关系中的角色，并开发了新的医疗决策共享方式。在危机之前，主导模式基于医生主导的医疗方面与涉及患者及其家庭的社会心理方面之间的区分。自危机以来，医学科学知识已在患者和医生之间共享。然而，这一总体趋势允许存在不同的患者、家庭和医生类型，这些类型又对应着不同的临床决策观念。一些患者仍然坚持医患互补的理念（新伙伴关系模式），而另一些患者则将医患置于平等地位（协商模式）。在医生方面，虽然有些人仍然倾向于最初的治疗决策模式，但大多数人已经重新评估了他们的观念和观点。一些人认为决策应由医生和患者根据科学程序（由科学标准控制的决策）或监管程序（由法律标准控制的决策）做出。还有一些人认为在决策过程中多种观点是可以接受的（作为互动性的决策模式）。
