Coordinating the norms and values of medical research, medical practice and patient worlds. the ethics of evidence-based medicine in 'boundary fields of medicine'

Abstract

Evidence based medicine (EBM) is rightly at the core of current medicine. This holds not only from a scientific or clinical point of view, but also from an ethical point of view: if patients and society put trust in medical professional competency, and delegate all kinds of responsibilities to the medical profession on behalf of that competency, medical professionals had better make sure that their competency expresses the state of the art of medical science. What goes for the ethics of clinical trials also goes, broadly speaking, for the ethics of medicine as a whole: anything that is scientifically doubtful is, ceteris paribus, ethically unacceptable. This particularly applies to so-called boundary fields of medicine, that is, areas of medicine where medical research is weak and diverse, lacking financial incentives, and where the evidence regarding the aetiology and treatment of disease is much less clear than in laboratory and hospital-based medicine. Examples of such boundary fields are physiotherapy, psychotherapy, medical psychology, and occupational health. In these fields, complex syndromes such as repetitive strain injury syndrome (RSI), whiplash, chronic low back pain, and chronic fatigue syndrome (CFS) are investigated. There is an urgent need for well-designed effect studies, preferably randomised clinical trials (RCT), to distinguish effective from ineffective therapies. It appears that the primary ethical problem in this context is the lack of attention to the boundary fields The problem may be diagnosed as a lack of evidence per se, or a lack of evidence that is appropriate to these specific fields and patients. Especially when allocation decisions are linked to the availability of evidence, matters of justice are at stake. This is potentially more so because many doubt the seriousness or even the reality of some of the problems in these fields. As documented and supported by the medical historian Shorter, syndromes such as RSI, whiplash and CFS have been explained by primary and secondary gain from illness, by the need of people with troubled lives to be supplied with a legitimate diagnosis and by popular media crazes for mysterious diseases especially if they affect young adults (Shorter 1992). Because of their complexity, their suspect reputation and the need for multiple coordinated interventions, health problems at the intersection of body, mind and society may not get the research and therapeutic effort they deserve. Although we agree that this issue deserves more attention as a matter of potential injustice, we want to argue that this specific form of complexity also calls for other models of analysis and evaluation. Our contention will be that, in order to do justice to the interplay of heterogeneous factors that are so typical to the boundary fields we discuss, ethical models other than justice are required. Firstly, we will analyse the standard way of reasoning why boundary fields in medicine are such difficult areas for extending the EBM methodology and the ethical problems related to that. This way of reasoning wifi be called the intrusion model of EMB, that is, EBM should intrude medical fields, which at present still lack an EBM-practice. We will qualify this analysis by using arguments from studies on therapies for chronic whiplash, chronic pain, chronic fatigue patients, and the repetitive strain injury (RSI) syndrome. Secondly, we will propose another way of reasoning this problem ethically, claiming that guidelines and instructions following from EBM have to coordinate different normative logics: the logic of clinical trials and other scientific methodologies, the logic of medical practice, and the logic of patient worlds, while each normative logic is beset with a set of normative issues. This wifi be called the coordination model of EBM: diagnostic, therapeutic and other health care procedures have to coordinate different worlds of norms and values, those of scientists, doctors and other health care workers, and of patients. Thirdly, we wifi introduce the political philosophy of Laurent Thvenot and Luc Boltanski, who developed a theory on the origin of social conflicts and the solution thereof, as a clash respectively, as the coordination of different contexts of justification, as a way of dealing with different worlds of norms: Thus, it can be shown that the analysed models are not contrary, but complementary models of EBM, and that they represent two complementary strategies of dealing with normative problems related to EBM. Finally, we conclude that the standard ethics of justice approach to EBM ought to be combined with a more procedural ethics of practice approach, emphasising the communicative and deliberative aspects of the practice of health care. © 2005 Springer-Verlag Berlin Heidelberg.