CONFERENCE – Preparing for Physicians. The ambivalences of empowerment

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

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