AGEM-Veranstaltung

Healing is a cooperative practice that involves multiple agents and requires negotiations of different needs and potentials. These negotiations are usually based on asymmetrical relations between healer and patient. Without specific expertise, skills, and knowledge of healing, there would be no need for consultation, and often patients are looking exactly for such an asymmetric relation to put themselves in the hands of an authority they can trust. Nevertheless, this asymmetry has often been criticized, especially in the realm of modern biomedicine and psychology, and especially in the context of chronic and rare diseases. Professional dominance (Freidson 1970) and a paternalistic imbalance in healer-patient relationships have thus led to an increasing claim for shared decision making and informed consent in order to empower the patient vis-à-vis her or his healer. The aim is to develop therapies and forms of interaction that explicitly seek to re-balance the relationship by taking into account the patients’ knowledge (as e.g. in many psychological therapies), or even trying to turn the asymmetric healer-patient relationship around and calling for full responsibility of patients themselves (e.g. in many esoteric therapies).

The Internet offers new possibilities for getting information and sharing experiences about the inefficacy or even harmfulness of popular and officially accepted therapies, on the one hand, and the efficacy of unknown and unconventional approaches, on the other, which may lead to distrust of professional or institutional authorities. Thus, patients can develop many strategies to carry out their own ideas and plans against a healer’s advice, if they disagree about the cause of the illness and the right course of treatment. Such strategies also may include simulating or neglecting specific symptoms to get a desired prescription, to avoid a specific treatment, or to get a temporary or permanent certificate of illness.

But empowerment is ambivalent. Patients are often torn between trust and suspicion, between the wish to be guided by experts and the wish to become an expert on their own, to give up or to keep responsibility for their health. Too much information can turn empowerment into confusion, and empowerment can also turn into manipulation, e.g. when pharmaceutical companies encourage patients to ask their healers for the drugs they sell (cf. Dumit 2012). Thus, empowerment is hardly straightforward. For instance, in which direction is empowerment oriented? Is it an extension of the patients’ biomedical knowledge? Or does it facilitate increasing demands from doctors, who are approached by patients who figure as consumers or customers? Does it include the right to remain a passive patient? Empowerment does not necessarily pit an autonomous patient against a dominant physician. This mélange opens up questions about the modes and means of empowerment. Who, beyond patients, has an interest in empowerment? Are Internet media engines of emancipation or sources of irritation?

After focusing on the healer’s perspectives and practices at the conference “Preparing for Patients. Learning the skills and values of healing encounters” in 2018, we now focus on the patient’s side and look for descriptions and analyses of their perspective and practices. We call for contributions that explore the ambivalences of empowerment both theoretically and empirically. We especially look for insights into the distributed nature of empowerment, the different constellations in which empowerment might be generated or reduced. Which resources are used to increase or to prevent the empowerment of patients, and which resources are used by the patients themselves? And what are the unanticipated consequences of empowerment?

Keynote: Prof. Nick Fox (University of Sheffield)

Conference language: English