Being an autonomous person with chronic disease

Respect for patient autonomy is a fundamental ethical principle in clinical health care. In most conceptions of patient autonomy, it is required that the patient considers information and knowledge that is relevant to the matter in question. Thus, the metaphor of navigating knowledge landscapes describes something that patients need to do in order to exercise their autonomy (1,2). This paper discusses how this “navigation” may be described from two different points of view of autonomy. In the well-known model of patients’ decisions about informed consent (3), autonomy is seen as a characteristic of decisions. However, autonomy can also be seen as a characteristic of persons. A concept called “Actual autonomy” is more relevant to contexts of an autonomous person with a chronic disease or disability (4). Here, decisions about informed consent are often less relevant.