Review: Improvising Medicine – An African Oncology Ward in an Emerging Cancer Epidemic (Julie Livingston, 2012)

Review: Improvising Medicine – An African Oncology Ward in an Emerging Cancer Epidemic (Julie Livingston, 2012)

In con­tem­pora­ry medi­cal anthro­po­lo­gy, a gro­wing body of eth­no­gra­phies of care, increa­sing inqui­ry into public health and the­ra­peu­tic prac­tice cen­te­red in the glo­bal South emer­ges con­tri­bu­ting to deba­tes on bio­me­di­cal ethics. Unli­ke most rese­ar­chers with an inte­rest in health­ca­re in sou­thern Afri­ca who tend to focus on HIV/AIDS, Julie Living­ston (2012) looks bey­ond the still most chal­len­ging, albeit obscu­ring enve­lo­pe of AIDS reve­aling an emer­ging can­cer epi­de­mic. With her stu­dy on can­cer in Bots­wa­na, she is a rep­re­sen­ta­ti­ve of an anthro­po­lo­gy of the body – accen­tua­ting bodi­ly expe­ri­ence and suf­fe­ring in a way being as clo­se to bio­lo­gi­cal and soci­al rea­li­ty as pos­si­ble, ther­e­by exten­ding the para­digm of the ’suf­fe­ring slot’ (Rob­bins, 2013).

She con­duc­ted exten­si­ve fiel­dwork in the small can­cer ward in Princess Mari­na Hos­pi­tal (PMH) in Botswana’s capi­tal Gabo­ro­ne, which has the only dedi­ca­ted onco­lo­gy in Bots­wa­na. Living­ston iden­ti­fies Bats­wa­na can­cer pati­ents and onco­lo­gy staff as part of a glo­bal the­ra­peu­tic com­mu­ni­ty – embed­ded in onco­lo­gy as an inter­na­tio­nal poli­ti­co-cul­tu­ral prac­tice and dyna­mic body of know­ledge –, like­wi­se ack­now­led­ging that can­cer in Bots­wa­na (and in Afri­ca) is loca­ted at the very peri­phe­ry of onco­lo­gi­cal ima­gini­ti­on. Loca­ting Afri­can and trans­na­tio­nal onco­lo­cy in a lon­ger time frame, she reflec­ts on long-stan­ding wes­tern images of Afri­can health and ill­ness that have led to noti­ons of infec­tious disea­ses as the pro­mi­nent Afri­can health pro­blem, and simul­ta­neosly to the mar­gi­na­li­za­ti­on of Afri­can can­cers, rela­ted to Euro-Ame­ri­can under­stan­dings of can­cer as a „disea­se of civi­li­za­ti­on.“ Howe­ver, the­re is a rising tide of can­cers across the golo­bal south and Afri­ca in par­ti­cu­lar, and the­se can­cers are wide­ly invi­si­ble, the gap bet­ween Afri­can and metro­po­li­tan onco­lo­gy diver­ging, the allo­ca­ti­on of money, tech­no­lo­gies, and drugs dedi­ca­ted to can­cer tre­at­ment cen­te­red in the glo­bal West. Besi­de this, it is struggling to adapt wes­tern metro­po­li­tan models to Afri­can con­texts, which often leads to mis­mat­ches and imba­lan­ced pro­ces­ses of know­ledge and tech­no­lo­gy trans­fer. Ulti­mate­ly, Living­ston argues, the emer­ging can­cer epi­de­mic will shape public health in sub-Saha­ran Afri­ca.

In her “hos­pi­tal-based eth­no­gra­phy,“ she reflec­ts on the dai­ly rou­ti­ne in the PMH can­cer ward, a place of serious suf­fe­ring, of hope, bore­dom, laugh­ter, and of death – being an utter­ly soci­al space, whe­re not only healing tre­at­ment, but also pal­lia­ti­on of pain and pro­found care are deman­ded. Making com­pa­ra­ti­ve swit­ches to onco­lo­gy in North Ame­ri­ca, the aut­hor shows how the “crea­ti­on“ of can­cer, its con­so­li­da­ti­on as a con­cre­te bio­me­di­cal object, dif­fers in Bots­wa­na and the glo­bal North due to spe­ci­fic con­di­ti­ons, con­ver­sa­ti­ons and ima­gi­na­ti­ons, whe­re­as can­cer its­elf is a glo­bal pro­blem, ever­y­whe­re con­nec­ted with uni­ver­sal human pro­blems of pain, ill­ness, dis­fi­gu­rement, and death.

Among insuf­fi­ci­ent tech­no­lo­gi­cal equip­ment, limi­ted stock of drugs, noto­rious time pres­su­re, a lack of pro­fes­sio­nal coun­se­ling and hos­pi­ce care, an insta­bi­li­ty of know­ledge, the addi­tio­nal pres­su­res of the AIDS epi­de­mic, and many fur­ther chal­len­ges, bed-space scar­ci­ty is one of the most acu­te pro­blems the PMH can­cer ward faces. Wit­hin this field of troub­ling con­di­ti­ons, Living­ston inves­ti­ga­tes the inter­ac­tions of pati­ents, their rela­ti­ves, and the ward staff con­sis­ting of black nur­ses, black cli­ni­cal assistents and the white Ger­man onco­lo­gist – taking into account the several imba­lan­ces of the hier­ar­chi­cal con­stel­la­ti­ons her­ein. Fur­ther­mo­re, she obser­va­tes how can­cer expe­ri­ence, hope, and noti­ons of futi­li­ty are built up through prac­tices in the ward’s soci­al nexus.

One of the fore­most cha­rac­te­ris­tics of the prac­tice in PMH can­cer ward Julie Living­ston makes out is the impe­ra­ti­ve of cli­ni­cal impro­vi­sa­ti­on due to the many­fold con­tin­gen­ci­es. That cli­ni­cal know­ledge its­elf is in many respec­ts ill-sui­ted to Afri­can cli­ni­cal con­texts, fur­thers the app­li­ca­ti­on of cli­ni­cal impro­vi­sa­ti­on as a defi­ning fea­ture of bio­me­di­ci­ne in Bots­wa­na and in Afri­ca, brin­ging about con­tin­gent tailo­ring of bio­me­di­cal prac­tice and know­ledge. It ren­ders the tre­at­ment paths pre-emin­ent­ly based on evi­dence and expe­ri­ence, and it may lead to inno­va­ti­on and ethi­cal dilem­mas ali­ke. Also the natu­re of decisi­on making in the given cli­ni­cal con­di­ti­ons is one of Livingston’s focu­ses: She reveals a basic prag­ma­tism that under­lies cli­ni­cal com­mu­ni­ca­ti­on and prac­tice often causing ethi­cal dilem­mas, espe­ci­al­ly when “sur­ren­de­red“ pati­ents are sent back home with their dead­ly can­cer wounds becau­se of the need of their bed. Empha­si­zing the struc­tu­ral ine­qua­li­ty bet­ween care­gi­vers and care-recei­vers, Living­ston descri­bes the ways of disci­pli­ning pati­ents as bio­me­di­cal sub­jec­ts, the cul­ti­va­ti­on of trust, the pro­blem of trans­la­ti­on, and most nota­b­ly the ten­si­ons tur­ning out bet­ween pati­ent self-deter­mi­na­ti­on and a high­ligh­te­ned medi­cal pater­na­lism.

Most striking in Julie Living­ston’ ela­bo­ra­ted account is, clear­ly, her com­mit­ment to the mea­nings, prac­tices and poli­tics of care, and ther­e­by her stress on the inter­re­la­ted com­plex of care, ethics and bodi­ly expe­ri­ence. Care-giving is cen­tral to the dai­ly prac­tice in the PMH onco­lo­gy, and a moral­ly pres­sing endea­vor. It lies at the very heart of the can­cer ward, which, as a who­le, Living­ston depic­ts as a power­ful­ly embo­di­ed soci­al, moral, and exis­ten­ti­al space. The aut­hor affirms this image by iden­ti­fy­ing the in the ward omni­p­re­sent expe­ri­en­ces of pain, ill­ness, dis­fi­gu­rement, and death as deeply soci­al ones. The can­cer pati­ent with his suf­fe­ring and his dis­gust evo­king, stin­king can­cer wounds threa­tens dehu­ma­ni­za­ti­on. It is the major task of nur­ses to rehu­ma­ni­ze their pati­ents’ bodies through pro­found care, the hear­ty clea­ning of the can­cer wounds, wit­hout any expres­si­on of dis­gust. Here, a deep and expli­cit under­stan­ding of care as a den­sely soci­al dyna­mic, cen­tral to the Tswa­na ethics, comes into play. The nur­ses embo­dy the­se ethics, the collec­tive moral ima­gi­na­ti­on (the Tswa­na huma­nist con­cept of botho) put­ting empha­sis on empa­thy. Addi­tio­nal­ly, most of them are inspi­red by the logics of Chris­ti­an healing pro­phe­sy. Inti­ma­cy and empa­thy make up the inter­sub­jec­tive phe­no­me­no­lo­gy of care: Nur­ses often deve­lop inti­ma­te, long-term rela­ti­ons to pati­ents and/or their rela­ti­ves. Rela­ti­ves, on their part, usual­ly moni­tor care, and influ­ence the soci­al dyna­mics in the ward in many respec­ts. Some­ti­mes the nur­ses have the obli­ga­ti­on to sub­sti­tu­te a patient’s rela­ti­ves. Acting accord­ing to logics of “soci­al“ healing, they miti­ga­te the soci­al iso­la­ti­on of ill­ness, pre­ven­ting the pati­ents’ soci­al death.

Moral­ly high­ly cri­ti­cal is the bounda­ry bet­ween har­ming and healing in the ward: Tre­at­ments like che­mo­the­ra­py and radia­ti­on the­ra­py cau­se immense pain and suf­fe­ring. The patient’s bodi­ly expe­ri­ence effec­ted by such unplea­sant bio­me­di­cal prac­tice is amidst the con­si­de­ra­ti­ons Living­ston is con­cer­ned with in her inves­ti­ga­ti­on of forms of bodi­ly con­scious­ness. She pays atten­ti­on to how pati­ents gain bodi­ly and cogni­ti­ve know­ledge about their disea­se, and how bodi­ly con­scious­ness is socia­li­zed. Important in this regard are the phe­no­me­nons of pain and laugh­ter in the ward – cli­ni­cal jokes about one’s own or other’s suf­fe­ring or even jokes about dying and death. Accord­ing to Livingston’s under­stan­ding, pain is not an object restric­ted to an indi­vi­du­al body, but a rela­ti­on not sepa­ra­ted from the wider flow of soci­al expe­ri­ence, a soci­al fact its­elf. This soci­al approach to pain empha­si­zing its situa­ted­ness, helps to unra­vel cer­tain phe­no­me­na: Why, despi­te the acces­si­ble resour­ces, are the nur­ses so reluc­tant to give their pati­ents suf­fi­ci­ent doses of anal­ge­sics in the face of their seve­re pain? Why, given the natio­nal ethos of care and empa­thy, remai­ned an ethics of pain pal­lia­ti­on until recent­ly so indis­tinct in Bots­wa­na and sou­thern Afri­ca? Why are the­re habi­tua­li­zed per­for­man­ces of silen­cing pati­ents (repres­sing pain expres­si­on) and of laugh­ter in the face of loud­ly expres­sed pain to be obser­ved in the can­cer ward? Here, the slight­ly func­tio­n­a­list natu­re of Livingston’s rea­so­ning gains pro­mi­nence. She iden­ti­fies Afri­can reluc­tan­ce to per­form pain loud­ly as a func­tion of cul­tu­re, envi­sio­ning for­bearan­ce as an cul­tu­ral­ly expec­ted form of auto­pal­lia­ti­on mis­sun­ders­tood by ear­ly Bri­tish and Ame­ri­can obser­vers. The­se sta­ted an image of pain-resistant, call­ous Afri­cans, and cul­ti­va­ted noti­ons of racia­li­zed dif­fe­ren­ces of pain expe­ri­ence. A subt­le per­for­mance of racia­li­zing pain Living­ston even met during her fiel­dwork in the PMH can­cer ward. Con­cer­ning the laugh­ter when cul­tu­ral norms deman­ding silent bea­ring of pain fail to be enac­ted, Liv­in­stone unders­cores the soci­al effec­ts of this laugh­ter: It ree­sta­b­lishes embo­di­ed socia­li­ty pro­vi­ding inti­ma­cy and soci­al con­nec­tivi­ty.

Livinstone’s soci­al ana­ly­sis of can­cer brings tog­e­ther the many expe­ri­en­ti­al and emo­tio­nal sphe­res sur­roun­ding the ill­ness, habi­tua­li­zed cul­tu­ral atti­tu­des, and links to the wider poli­ti­cal and eco­no­mic con­text of health­ca­re in sou­thern Afri­ca, reve­aling the fra­gi­li­ty of the local insti­tu­ti­ons. In her mono­graph, I espe­ci­al­ly appre­cia­te the way she calls into ques­ti­on the pre­cep­ti­ve, heroic mas­ter nar­ra­ti­ves of can­cer in the glo­bal North, the basic assump­ti­ons about ill­ness, death, hope, and medi­ci­ne that many pati­ents, their cli­ni­ci­ans, and fami­ly mem­bers in this part of the world often take for gran­ted. With her depic­tion of can­cer and its dra­ma­tic bodi­ly and soci­al expe­ri­ence in Bots­wa­na she sets a coun­ter­part, which yet accen­tua­tes the human uni­ver­sals as part of can­cer. Her refe­rence to know­ledge pro­duc­tion and to local Tswa­na hea­lers, howe­ver, is les­ser than I would have expec­ted and wis­hed. But despi­te this, the­re is not much I miss in her ela­bo­ra­ted account that makes can­cer in Bots­wa­na poi­gnant­ly and devas­ta­tin­g­ly visi­ble in a strong eth­no­gra­phic wri­ting.

References:

Living­ston, Julie: Impro­vi­sing Medi­ci­ne – An Afri­can Onco­lo­gy Ward in an Emer­ging Can­cer Epi­de­mic. Duke Uni­ver­si­ty Press, Durham & Lon­don 2012.

Rob­bins, Joel: Bey­ond the Suf­fe­ring Sub­ject: Toward an Anthro­po­lo­gy of the Good. In: Jour­nal of the Roy­al Anthro­po­lo­gi­cal Insti­tu­te, Volu­me 19, Sep­tem­ber 2013, Issue 3, pp 447–462.