Physician-patient relationship in rare diseases: an ethical approach

摘要

Rare diseases are a special category of pathology recognized as such relatively recently, starting about 30 years ago in the USA and around the year 2000 in Europe. Rare diseases are clinically and therapeutically heterogeneous, being characterized by a number of common aspects that have a negative impact on patients’ evolution and quality of life, such as: delayed diagnosis, limited scientific knowledge about some of them, lack of treatment or limited availability of treatment. At the same time, information campaigns on rare diseases are limited, and the number of association of patients that promote their interests and rights is also reduced. The quality of physician- patient relationship is particularly important in the management of rare diseases, non-medical aspects, especially the ethical and moral aspects, being often more relevant to patients than the medical aspects. The ethical framework for the analysis of rare diseases encompasses a number of particular aspects, generated on the one hand by the need to properly approach patients suffering from rare diseases in the context of rising expectations for the medical system, and on the other hand, the pro-profit behavior of the pharma companies. This paper analyzes the particular ethical issues identified in the clinical approach on rare diseases, with a focus on the particularities of the physician-patient relationship in this context.