(cid:2)BUILDING NEW KNOWLEDGE SUPPLEMENT ‘‘Even if I were to consent, my family will never agree’’: exploring autopsy services for posthumous occupational lung disease compensation among mineworkers in South Africa Audrey V. Banyini1,2*, David Rees2,3 and Leah Gilbert4 1ChamberofMines, Johannesburg, South Africa;2SchoolofPublic Health, FacultyofHealth Sciences,University oftheWitwatersrand, Johannesburg, South Africa;3National Institute for OccupationalHealth,NationalHealthLaboratoryService,Johannesburg,SouthAfrica;4Department ofSociology, University oftheWitwatersrand, Johannesburg, South Africa Context: In the South African mining sector, cardiorespiratory-specific autopsies are conducted under the OccupationalDiseasesinMinesandWorksAct(ODMWA)ondeceasedmineworkerstodetermineeligibility forcompensation.However,lowlevelsofautopsyutilisationunderminethevalueoftheservice. Objective: To explore enablers and barriers to consent that impact on ODMWA autopsy utilisation for posthumousmonetarycompensation. Methods:In-depthinterviewswereconductedwithmineworkers,widowsandrelativesofdeceasedmineworkers aswellastraditionalhealersandmineoccupationalhealthpractitioners. Results: A range of socio-cultural barriers to consent for an autopsy was identified. These barriers were largely related togendered power relations, traditional and religious beliefs, and communication and trust. Understandingthesebarrierspresentsopportunitiestointervenesoastoincreaseautopsyutilisation. Conclusions:Effectiveinterventionscouldincludeengagementwithhealthymine-workersandtheirfamiliesand re-evaluating the permanent removal of organs. The study adds to our understanding of utilisation of the autopsyservices. Keywords: mineworkerautopsy;posthumouscompensation;SouthAfrica;consentforautopsy Received:13 August 2012; Revised:25 October 2012; Accepted:25 October 2012; Published:24 January 2013 South Africa has a statutory system for the post- re-examination in cases of appeal on the certification mortemexamination(autopsy)ofcardiorespiratory categories by the families. ODMWA certifications are organsofdeceasedmineworkerstodeterminetheir categorised into either ‘no compensable disease’, ‘first eligibility for compensation. The procedures (family degree’or‘seconddegree’,withthelatterbeingthemore consent,removalandtransportingoforgans)andbenefits severe occupational disease which carries a larger com- (whicharelargelyfinancial)aregovernedbytheOccupa- pensationpayment. tional Diseases inMines and WorksAct(ODMWA)(1). The provisions of this Act are important as a large The actual pathological examinations and certification number of former mineworkers are not compensated (the determination of the nature and severityofoccupa- in life (2(cid:2)5). During 2001(cid:2)2010, 311 deceased mine- tional disease) are centralised in Johannesburg, a city in workers who were not compensated while alive were GautengProvince,whichisdistantfrommostminesand found to have first-degree occupational lung disease areasinwhichformermineworkersandtheirfamilieslive. and 2,426 second-degree disease. Additionally, 59 cases Consequently, the organs are permanently removed and, wereupgraded fromfirst to second degree. Applying the after a period of storage, destroyed in Johannesburg. salary range used to calculate compensation payments The organs are stored for a maximum of 2 years for ($3,340.50(cid:2)$4,912.50), the 311 families were eligible for GlobHealthAction2013.#2013AudreyV.Banyinietal.ThisisanOpenAccessarticledistributedunderthetermsoftheCreativeCommonsAttribution-99 Noncommercial3.0UnportedLicense(http://creativecommons.org/licenses/by-nc/3.0/),permittingallnon-commercialuse,distribution,andreproductionin anymedium,providedtheoriginalworkisproperlycited. Citation:GlobHealthAction2013,6:19518-http://dx.doi.org/10.3402/gha.v6i0.19518 AudreyV.Banyinietal. $1,038,895.50(cid:2)$1,527,787.50 compensation in the first- N, unpublished data, 2010). Insufficient knowledge of degree category with an average of $4,126.50 per family. ODMWA provisions by the mineworkers, their relatives Similarly for those categorised as having second-degree andhealthpersonnelinruralhospitalshasbeenpostulated disease, the 2,426 families were eligible for $24,260,000(cid:2) as one of the causes of underutilisation (15). There is a $26,537,407.50 with an average of $10,469.38 per family. dearthofresearchonthisunderutilisation.Theaimofthis During the 10-year period, the 311 cases in the first- paper is to fill this gap by exploring the enablers and degree category and the 2,426 in the second degree were barriersaffectingODMWAautopsyofblackmineworkers 2%and18%,respectively,ofalltheautopsiesperformed. andtheirfamilies. Of particular poignancy in the South African context of impoverished rural communities is that despite the Methods potential financial benefits for the families of deceased This descriptive study used an exploratory, qualitative mineworkers, there is underutilisation of the autopsy approach to obtain in-depth information from respon- servicebyblackmineworkers.Forexample,during2001(cid:2) dents. Such an approach is usually associated with the 2010,TheEmploymentBureauofAfrica(TEBA),which social constructivist paradigm which emphasises the annually registers 71% of the total mine employees, sociallyconstructednatureofreality.Itisaboutrecording, recorded 28,265 in-service mineworkers’ deaths, all of analysingandattemptingtouncoverthedeepermeaning whom were eligible for an autopsy (Herbet G, unpub- and significance of human behaviour and experience, lished data, 2011). Yet, only 13,201 autopsies (i.e. 46.7% including contradictory beliefs, attitudes and emotions. of TEBA-recorded deaths) were performed during this This approach was usedwith the aim of discovering the period (5). Assuming that the same 10-year average meanings that respondents attach to their choices, how proportions of first- (2%) and second-degree (18%) they interpret situations, andwhat their perspectives are certifications would have been applied to the 15,064 on autopsy-related issues. Qualitative studies provide an TEBA-recorded deaths, an additional 355 and 2,769 understanding of complex psychosocial issues (16), and families would have been eligible for $1,185,869.62(cid:2) the enquirer seeks insights into the meaning(s) attached $1,743,926 in the first-degree and $20,598,076.13(cid:2)$30, toeventsbyseekingdisparateviews,ratherthanlooking 291,695.50 in second-degree categories, respectively. It to determine the most commonly held view (17). should be noted that these calculations of financial loss The advantage of qualitative methods in exploratory due to underutilisation of the autopsy underestimate research is the use ofopen-ended questions and probing the true losses because the number of deaths in non- which gives respondents the opportunity to respond in TEBA-registered (in-service mineworkers) and retired theirownwords,ratherthanforcingthemtochoosefrom mineworkers is unknown and are excluded from the fixedresponses,asquantitativemethodsdo.Open-ended calculations. Although money is only one aspect of questions as used in this study have the ability to evoke defining poverty, the compensation award is up to 11 responsesthataremeaningfulandculturallysalienttothe timesthemineworkers’monthlysalary(6),andtheaward participant,unanticipatedbytheresearcher,andrichand has been shown to offer a short-term financial relief to explanatoryinnature. families of the deceased mineworkers (7). Forvariousreasons,thenumberofautopsiescontinues Respondents to fall despite the potential benefits of the procedure to Therespondentswereformerminers,relativesandwidows families and medical science (8, 9). Some of the reasons of the deceased miners, in-service miners and others for the decline include fear of mutilating the body, (traditional healers and occupational health practi- maintaining the body in the best condition possible, tioners). These categories of respondents were selected lack of knowledge about autopsy, belief that the exam- because of the particular perspective they were likely to ination during an autopsy inflicts further suffering to bring.Minersandtheirfamilieshaveadirectinfluenceon the body, the treating physician’s lack of rapport with autopsy utilisation, and traditional healerswere thought the deceased’s family, lack of consensus among family to be able to offer a shared cultural perspective on membersregardingtheprocedure,concernaboutfuneral attitudes towards autopsy and may also be in aposition delays, dying at home as opposed to hospital or toinfluencebehaviour.Occupationalhealthpractitioners preference to preserve the dignity of the deceased over were considered to be capable of offering a shared knowing the cause of death (10(cid:2)14). experienceonthemineworkers’attitudestowardsautopsy InSouthAfrica, theODMWAautopsiesaredeclining astheyhadcontactwithminersandfamiliesduringillness especiallyamongretiredmineworkers.Forexample,ofthe and death. In the main, informantswere selected on the total 4,255 ODMWA autopsies of black mineworkers basis of their availability and accessibility. Individual during 2007(cid:2)2010 (noting that there were 11,512 TEBA- informants were identified through community workers, recordeddeaths),19.6%wereperformedonretiredmine- other mineworkers and representatives of organised workers and the rest on in-service mineworkers (Ndlovu labour,exceptfortraditionalhealerswhowereconsidered 100 Citation:GlobHealthAction2013,6:19518-http://dx.doi.org/10.3402/gha.v6i0.19518 Autopsyservicesforlungdiseasecompensationamongblackmineworkers popular among mineworkers and each of whom repre- medical information; compensation legislation knowl- sentedadifferentculturaltradition. edge, ODMWA processes and benefits; and autopsy The majority of retired mineworkers, relatives and knowledge,perceptionandattitudes. widows were from Nongoma, a district of KwaZulu- NatalProvince,whichhasahighdensityofmineworkers Conceptualframework (HerbetG,unpublisheddata,2011).Additionally,retired In the absence of adequate literature on barriers to mineworkers living in five urban townships around Free an autopsy for the compensation or what encourages State Province gold mines and in-service mineworkers its utilisation, the literature on general clinical autopsy fromaRandfonteingoldminewestofJohannesburgwere was used to formulate a conceptual framework for the selectedonthebasisofconvenience,beingrelativelyclose study (Fig. 1). The identified potential factors playing a tothebaseoftheresearchers. role in clinical autopsy utilisation were found to be at individual, institutional and community/societal levels. Datacollection Factors at individual and socio-cultural levels were The in-depth interview approach was selected for the used to develop the semi-structured questionnaire to study to explore individual or group meaning and guide the interviews and the thematic analysis of the experiences since human phenomena such as psychoso- transcripts. cialresponsesareembeddedinculturalpatterns,andthe inter-relationships among its components are complex, Dataanalysis necessitating a flexible enquiry that allows concepts to All interview data were transcribed into English within emerge from the data being collected (16, 17). A semi- 3 days of the interviews by the first author who speaks structuredquestionnairewasusedtoguidetheinterviews. the vernacular languages and English to ensure recollec- Usingopen-endedquestions,theresearcherprobedinitial tion of discussions. Handwritten notes taken during the responses to gain in-depth insights. The questionnaire interviews were also included in the analysis. Key ideas was piloted with three retired mineworkers and four generated were noted at the end of each interview. in-servicemineworkersandthereafterrefinedforcontent ThenotesforeachinformantwereuploadedinMAXqda clarity. All of the interviews were conducted and audio PC (2003), coded and grouped into thematic categories. taped by the first author, a medical doctor who speaks Emerging themes were identified using the conceptual the vernacular languages of the respondents, in the framework and their meaning interpreted. respondents’ preferredlanguage. Additional handwritten notes were also taken. Informants were free to stop and discontinue the interviews. Numberofrespondents The issues covered in each interview were: labour The maximum number of respondents was set at 70 or history; mine medical surveillance and mine exit whenever saturation of information was reached. Fig. 1. Conceptualframeworkoffactors influencingclinical autopsyutilisation. 101 Citation:GlobHealthAction2013,6:19518-http://dx.doi.org/10.3402/gha.v6i0.19518 AudreyV.Banyinietal. Ethics matrilineal relations in the absence of paternal relatives Informedconsentwasobtainedfromallrespondents,and wereconducivetoautopsy.Inaddition,theabsenceofthe confidentiality was maintained. Relatives and widows deceasedmineworker’sfamilycreatedanopportunityfor who experienced the death of a mineworker within two thewidowtogiveconsent. yearspriortothestudywereexcludedtoreducepsycho- Awidow from Nongoma said: logicalandemotionalreactionsinvokedbydiscussingthe Autopsy, I will agree to find the cause of death ... death of their lovedone. The study wasapprovedby the however, in my situation, he belongs to his family FacultyofHumanities’HumanResearchEthicsCommit- whohasafinalsay ....Ihadnopoweraroundthe tee (non-medical) in 2007, Ethical clearance number death. You are only shown his body after the elder H070618. familywomendressedhimandtheyshowyouonly hisface.Youaretoldnottolookatfaceforlong ... Results youaremourning.Youwillknowwhatishappening orgetupdatesonlyifyouhavesomeonewhoreally Seventy respondentswere interviewed as shown (Fig. 2). loves you .... You still don’t have any power to Almostallofthemineworkers,theirrelativesandwidows questionanything.Myhusbanddiedinhospitaland were unaware of the benefits and processes of ODMWA Itookhimthere(silence) ....Hediedthefollowing autopsy. dayandIwassenthometomournhim ...yesasa The results on the enablers and barriers impacting on wife you mourn. We used to hear about minewor- autopsyutilisationwerelargelyrelatedtogenderedpower kerswho had autopsy at the mines .... thiswill be relations, traditional and religious beliefs, and commu- discussed,buttheirwivesdidnotknowaboutit ... nication and trust. For this reason, the findings are theydid notseethescars. presented under these headings. ApaternalauntofthedeceasedmineworkerinNongoma articulated: Genderedpowerrelations Accordingtorespondents,duringthebereavementperiod, Mybrother’ssondiedattheageof31yearsleaving a small child. He came back ill .... If I had widowsobservedaperiodofmourningandwereexcluded knowledge about the autopsy, I will consent .... If from funeral and burial rituals and decision-making. Iknowwherethepartsfromautopsywent,Iwould During this period of mourning, awidow’s communica- have agreed .... I would inform him and the tion and contact with other family members would be ancestors through the sacrificial killing. I will limiteduntilapre-determinedperiodandthepersonwill consent because of the purpose and there is berituallycleansed.Somefemalerespondentsarguedthat possibilitythathiskids,whoarecurrentlysuffering even if they agreed to an autopsy, they would miss an financially, get a chance of compensation .... It is opportunitytoconsentbecauseoftheculturalrestrictions now the issue of the person notdiscussing the laws andtaboossurroundingmourning.Theyarticulatedthat withthefamilyandthedoctorsnottalking.Itisthe a man’s body belonged to his birth family and not to currentmythofyoungonestobelievethattheywill his wife or adult children. This implied that a man’s live longer thanugogo (grandparents) .... Theydo notcommunicate. patrilinealrelationswerestrongerthantohiswife.While the wives did not have decision-making power to give The respondents’ view on the widow’s lack of decision- consent, patrilineal powers extended to paternal aunts making power relating to her deceased husband was who can communicate with ancestors. On the contrary, corroborated by traditional healers. According to them, Fig. 2. Keyinformants bycategoryandnumber. 102 Citation:GlobHealthAction2013,6:19518-http://dx.doi.org/10.3402/gha.v6i0.19518 Autopsyservicesforlungdiseasecompensationamongblackmineworkers the role of a wife during mourning is considered by the fortune ... while looking for his scattered parts. familytobeaminorone.Theyexplainedthatwiveswere Traditionally wesuffer fromthese decisions .... alien to ancestral communication. The‘emptybox’wascorroboratedbytraditionalhealers. A traditional healer (from Gauteng) articulated: Autopsy is not in our vocabulary as people. We If I die my family tradition andwhat is required is believethat whenapersondies,thereshould beno known by my family ... they can inform my wife. organs/partsremoved.Thepersonshouldbeburied They (my family) know which songs must be sung, whole, so that when we reunite his body with his the messages to be communicated to my ancestors spirit .... We believe that when a person dies, and the rituals that must be performed in linewith hewakes up. thefamilytraditionandculture.Thewifewillnotbe able to sing this song for me, as she will not know Some respondents argued that autopsy further inflicts the song. My wife would join after my family has pain on the deceased and disturbs their peace. This completed the task .... perceptiondeterredthebelieversfromacceptingautopsy, as illustrated in the following citation. Thegenderedsupremacyofthecollectiveoverthewidow An in-service mineworker from Mohlakeng and wasreversedintheabsenceofthemineworkers’familyof originally from Mozambique said: originandforthosewholiveinamodernnuclearfamily structure. My belief is that this (resurrection) will not be Awidow from the Welkom, Free State noted: possibleasthispersonwasburiedwithoutcomplete parts ....Idon’tlikethisautopsyandwillnotagree He was 53 years. He died of cancer of the lungs to ...whenapersonisdead,isasleepandautopsyis andbreathedthroughatracheotomybeforehedied. disturbinghis/herpeace ...itistroublingtheperson No autopsy was requested ... he worked under- andI will thereforenotagreeto this. ground for many years. His parents passed on before him. I will consent to autopsy ... you see Some respondents argued that the soul and spirit were Iwasaloneandhisfamilydiedearlier.Imadeallthe independentofthebody.(Thewordssoulandspiritwere decision surrounding his funeral and mourned him used interchangeably to denote a similar meaning.) observing thefamily tradition. According to respondents, once the soul and spirit departs from the body at death, the body and its parts Traditionalandreligiousbeliefs are useless because the soul becomes ‘a complete being’ There were respondents who accepted autopsy because capable of conducting all functions. They expressed the they believed that the soul dissociates from the body at view that the spirit is able to protect the living members death, and there were those who disagreed with the of its family against misfortunes and advise them when dissociation of the soul from the body. According to consulted, and become a good ancestor and be reincar- those who disagreed, cardiorespiratory organs were an nated irrespective of the status of the body at death or engine that were crucial for the individual’s existence in burial.Thisisincontrasttothe‘emptybox’concernsof afterlife, resurrection, reincarnation and for becoming a some respondents. good ancestor. They also believed that being buried An in-service migrant mineworker from the Eastern without cardiorespiratory organs was similar to burying Cape articulated: ‘an empty box’, and this will anger the ancestors and cause the deceased’s soul to be rejected by them. The I personally believe that ‘flesh’ is soil. Once spirit respondentsdescribedtheirfearofwrathandmisfortunes (umoya)leavestheflesh,thefleshhasnowheretogo otherthanbacktothesoil.Thesoulofanancestor from the ancestors and the deceasedwhich included fear doesnotgowithflesh ....Theancestorsareasoul/ oftheirowndeaths.Somerespondentsdetailedtheirfear spirit.Tomethissamespiritissimilartothatwhich about their inability to meet the ancestral demands to is religiously preached .... It does not mean that return the cardiorespiratoryorgans for burial. when the flesh is incomplete, so is the spirit. The Aformer mineworkerfromVirginia,intheFreeState, fleshisdead,thereisnothingmuchthatwillbedone whowasworried about the ‘empty box’, explained: bytheflesh,itisdeadandstonedead,itwillnever I don’t agreewith the autopsy ...aperson is these comebackandwhatremainsisto buryit. organs.Theycanbecheckedwherehedied ...why A former mineworker from Nongoma expressed the send them away ... my cardiorespiratory can’t be following: sentaway ...becauseaspeoplewehaveourcultural lawsandbeliefs.Whenwehaveourcultureandyou Icanconsenttoautopsybecausethebodyrotsand areburiedapartfromtheseorgans ...,theancestors is buried. My family may disagree with my accep- willnotlikeit.EvenifIcanagree,thefamilywon’t tanceoftheautopsy ....Ibelievethatthesouland agree that I am buriedwithout these organs .... If spiritarecomplete,evenifthepersonismaimedone the family consents when the person has died, he way or the other. This has never changed in our will come back to haunt them, cause them mis- tradition; it has always been known that once the 103 Citation:GlobHealthAction2013,6:19518-http://dx.doi.org/10.3402/gha.v6i0.19518 AudreyV.Banyinietal. person dies and the soul leaves the body, the soul mitigatedthroughpropercommunicationwithancestors. can’tdrawbacktheflesh(body)andviceversa.This Some respondents believed that communication will isabeliefrootedintraditionalvaluesmorethanthe address the ‘empty box’ concern, deceased’s anger and born-again Christian concept which may vary .... rejectionbyancestorsofanincompletebodyandthesuf- I am not a born again. For an example, you die feringinflictedbytheprocedure.Forthecommunication beheaded,youcan’tgluethepiecestogether,butthe tobeacceptable,therequiredritualsshouldbeperformed spiritis complete,notbeheaded. following autopsy acceptance by the mineworker and Some respondents believed the organ retention and communicationofthisintentiontothefamilywhilebeing autopsy were similar to commodification of the body healthy.Accordingtorespondents,communicationtothe parts.Accordingtothem,theirroleiscaringforthebody ancestors is not acceptable if only carried out when the during life and up to the time of burial, as the soul can mineworker is ill. take care of itself. They were concerned that giving An in-service mineworker from Eastern Cape said: consent to ODWMA autopsy would be considered as In my family culture, this autopsy may not be sacrificing that responsibility. acceptable because they (ancestors) know that the A former mineworker from Nongoma’s view was: person was complete when he died, and now he is This autopsy is not correct, whether it is for buried being incomplete and tormented by this compensation or not. It is like selling your body autopsy .... The ancestors will not recognise parts for money. I would not be motivated by him .... This scenario changes if he has expressed money. Money finishes. It is like I sold my family, his intention for autopsy in life because the family my child, never! .... So the doctor explains why and he would have communicated this intention to autopsy should be done, to find the cause of death ancestors in a proper way known to the ancestors. or there is disease and so what about it! Religion The ancestors will not disagree with him because motivatesonetotakecareofthesoulmorethanthe theywereconsultedearlieraboutit ....However,if body ...andrationalisethatautopsyisok ....Only they consent without my prior knowledge and modernised people agreeto autopsy. acceptance .... I will come and harass them (whoevergaveconsent). However, some respondents believedthat autopsywould benefit them by elucidating the presence or absence of A grandmother (from Nongoma) of deceased mine- disease,confirmthecauseofdeathandprovidefinancial worker reiterated: supportfortheirfamilies.Somebelievedthatautopsywill I don’t like this autopsy (as you explain it). If I provide closure on the mystery surrounding the cause of know, I can consent, and I will also remind the death and argued this mainly when the deceased were ancestors and him through the sacrificial killing. young. Hewillnotcastabadspellcomparedtohimbeing Anin-servicemineworkerfromMohlakeng,Randfontein buriedonlytobeinformedbytheancestorswhodo said: not welcome him due to missing parts that he was not aware of. If he told me about the autopsy and I am hearing about autopsy for the first time and I didnotinformthe ancestors, hewill troubleme. Idon’thaveanyproblemsasitisoktofindoutthe cause of my death. I believe that it is right for the Some respondents noted that for communication to be law to check whether I had disease ... This may effective, trust among families and in the communities is benefitmyfamily.Iwastoldaboutchestpickupfor required. They reported instances when men and their compensationwhenIwasworkingatanother mine families mistrusted wives. According to them, there is a ... ever since I started here, I was never told traditional belief that some husbands die because their anything. A deceased body has no further purpose wives killed them. in life and whatever can be done on my body to A former mineworker from Nongoma articulated: assistmy family Ican consent. An in-service mineworker from Eastern Cape expressed: I can consent to autopsy .... With regard to discussing autopsy with my wife for possible com- I don’t believe that being buried without lungs pensation, do I have to discuss this with her? The affects the position of an individual to be an familycanknowabouttheautopsybutnotmywife ancestor (‘indlhozi’). The flesh rots; however, the ...(silence) ...itisaproblem.Thislawcanalsobe spirit of that person remains alive and comes back told to the magistrate who can then implement it. to give the light to the family. The person can also I know of a friend of mine whose son died of appear during family dreams as a complete person stomachulcers,dostomachulcerskill?Ibelievethe andthatbodyisnolongerthefleshthatwasburied. wife poisoned him so that she can get the money. The family found that he has been poisoned byhis Communicationandtrust wife. How can anulcer kill? This law must use the Respondentsreportedthatthegenderedpowerrelations, officeofthemagistrate.Womenwillfinishthemen family, traditional and religious fears to consent may be and consent to autopsy if they know that there is 104 Citation:GlobHealthAction2013,6:19518-http://dx.doi.org/10.3402/gha.v6i0.19518 Autopsyservicesforlungdiseasecompensationamongblackmineworkers going to be possible compensation .... In my Discussion culture, women do not have power to decide on South African mineworkers have a high burden of this, only men have power for decisions. Women occupationallungdiseases(2(cid:2)4),butmanydonotreceive carry them out. occupational compensation in life. Consequently the A former mineworker from Welkom said: ODMWA autopsy provision is important, yet under- utilisation of autopsy is substantial. The aim of this I believe that women are witches and that should study was to explore the enablers and barriers affecting they know that you have consented to ODMWA ODMWA autopsy utilisation by black mineworkers and autopsywhichhaspotentialcompensation,theycan their families to understand them so that effective do anything sinister. You see, even when I was interventions can be designed. working ... and now that I have retired due to ill Thestudyfoundthattheenablersandbarriersaffecting health,Ihaveneverdiscussedanythingwithwomen, including money issues .... I am the breadwinner ODMWA autopsy utilisation are diverse, complex and andherroleis to receiveany money I giveher. multifaceted and these were entrenched in cultural, religious or societal domains. The respondents rationa- Some respondents expressed that autopsy should be lisedtheiracceptanceorrejectionofautopsywithintheir treated the same way as items listed in an individual’s own individual cultural or religious belief system, and willtoensurethatthespouseandothermembersoftheir these varied according to the individual’s experiences, family are able to carry out the request if other family family beliefs and societal practices. The prerequisites to members questioned the procedure. increase utilisation autopsy are significant and varied. Anin-servicemineworkerfromMohlakeng,Randfontein, Foremost, ODMWA autopsy process and the potential explained: compensationbenefitsneedtobeempatheticallycommu- Iwillconsenttoautopsy.Itoldmyfamilythatwhen nicatedtoallmineworkers,theirfamiliesandcommunities I die, my wife must inform the mine that my whilethemineworkersarestillhealthytoalleviatecultural cardiorespiratoryorgans can be removed forexam- barriers to consent. Trust concerning the ODMWA inationtocheckforoccupationaldiseasesandother processmustbeestablishedamongthemineworkers,their organsifhealthybedonatedtohelpthosewhoneed families and society, and the purpose and the potential them .... If my relative wrote in a will that he benefits must be understood by all parties. This finding consents to autopsy I will carry it out because it is suggests that central to building public and family trust, hiswish and I would not want to disagreewith his communication, awareness and knowledge should occur spiritandsoul.Hisbeliefsarenotthesameasmine. when mineworkers are healthy so that consent can be I would not want to disagree with his soul as an ancestor. obtained easily at death. This perception presents an opportunity for policy makers and the mines to develop Somerespondentssaidthattherewasatraditionalbelief and implement intervention awareness and communica- that discussing death-related matters is challenging, and tion strategy, as this strategy would enable mineworkers it may actually invite death to occur in their families. andtheirfamiliestoperformritualsandwouldreducethe They noted that the fear to invite death limited indivi- potential for a wife to be accused by the family and duals from discussing their post-death wishes. Respon- communityofthemurdererofherhusband. dents discussed their experiences with families that The requirement for consent is one reason for the missedoutonpotentialdeathbenefitsbecauseoflimited declineinnon-forensicautopsies(9).Althoughobtaining communication. informed autopsy consent is to elicit the family’s (and Anin-servicemineworkerfromRandfonteinreiterated: deceasedpatient’s)religious,culturalandethicalsensitiv- ities and determine what information is significant to Thisautopsyisunusual.Therearemanypeoplewho willmissthiscompensation.Itisinourculturethat decision making (19(cid:2)22), the study found that family discussing matters relating to death is not a good consent was deemed important to appease ancestors so thingasonecouldbecallingforit(meaninginviting thatmisfortunesareassociatedwithcausesotherthanthe death) .... I don’t believe that discussing it is wrath of their ancestors. This finding is similar to other challenging it. There are many people that I know low-income settings that found that the initial decision wholostsomuchbecausetheirwivesknewnothing making for informed consent was vested in the commu- andtheyhadnoinformationtoarguetheircases ... nity rather than in the individual (20, 23). they did not talk to their families .... There are This study established that retention of cardiorespira- many people I know who havelost everythingthey tory organs for re-examination in case of an appeal by owned, which the family did not know or if they familiesposesamajorchallenge.Burialwithoutcardior- know, do not have the means of accessing these ‘materials’ or doing follow-up because the person espiratoryorgans(‘emptybox’)wasnotculturallyaccep- toldthemnothing.Thisiswhatwepickupwhenwe table to many respondents. Returning the organs to the arein thevillagesduring a funeral. bodyafterexaminationwasdeemedculturallyacceptable. 105 Citation:GlobHealthAction2013,6:19518-http://dx.doi.org/10.3402/gha.v6i0.19518 AudreyV.Banyinietal. Although this would address those that believed in the their contact and researcher would want to hear. While ‘empty box’, this intervention requires mobilisation of thisbiascouldbereal,thetraditionalhealersandhealth resources to ensure that examinations pose no delays to practitioners corroborated the responses from the re- burial arrangement, as this may damage the trust by the spondents, and this suggests that the responses were familyandcommunity.Similarculturalbeliefswerefound genuine. in another study: burial with body parts missing or receiving an organ transplant (‘foreign’) was believed to Policyimplications prohibit an individual’s transition to the realm of the First, the findings that cultural beliefs influence ancestorsbysomeblackSouthAfricans(23). ODWMAautopsyconsent(cid:2)andwithinthecultureitself Thisstudyalsofoundthattheautopsyorganretention therearevariousinterpretations(cid:2)provideanopportunity processinordertoobtainthepotentialbenefitswasakin to ensure that mineworkers, their families and the to commodification of body parts. communities they come from or live in understand the The various African religious and cultural beliefs purpose of autopsy in a manner that addresses these found to be barriers to clinical autopsy; organ donation beliefs. The high burden of undiagnosed occupational and this study are not unique. In Islam, autopsy and lungdiseasesinlifewarrantsthisinterventionandshould dissection of body parts for research are generally be considered as a method to secure informed consent. prohibited because of pre-destination belief and are Second, decentralisation of autopsy examination so akin to violation of human body sanctity (18, 22, 24). that organs can be examined and replaced beforeburial, Unlike in Catholic and most Protestant religions, where thus removing the ‘empty box’ barrier, warrants consid- autopsiesaregenerallyaccepted,Hindureligionforbidsit eration. However, replacing the organs for burial would because of the belief in reincarnation (20). One study remove the opportunity for re-examination during an found that Judaic and Muslim families of the deceased appeal by families, and this issue needs consideration if gaveconsenttoautopsyifitwouldbenefitthefamilyand decentralisationofautopsyistobeadvocated.Addition- communities’ lives or find the cause of death (24). In ally,theODMWAautopsies’dataarecomprehensiveand Muslim communities, post-mortem needle biopsy was have been the resource for both mineworkers’ occupa- accepted at a family and community level if it provided tional lung disease surveillance and research over many communitybenefitswithoutviolatingfamilyandcultural decades(25(cid:2)28).StepstopreservetheODMWAautopsy beliefs (24). databasewouldhavetobeputinplaceifdecentralisation This study found that building awareness and increas- was to happen. Also, centralisation allows for a uniform ing knowledge of families and communities while the and standardised pathological assessment of disease and mineworker was healthy to allow for ancestral ritual the extent of disease. Steps to preserve these advantages communication on the process rendered organ removal wouldhavetobeimplementedinadecentralisedsystem. for examination acceptable to some, while others ac- ceptedonlyon-siteexaminationandreturnoftheorgans Conclusion for burial. The study found not only barriers to autopsy but also The findings from this study highlight that cultural cultural beliefs that may enable these barriers to be factors present both barriers and opportunities for overcome.Thesefindingsmaybegeneralisabletosimilar ODMWA autopsy. Unequal power relations control socio-cultural environments outside South Africa. Chief autopsy decisions and lead to exclusion of potential amongthebarrierswastherequirementtoobtainformal beneficiaries (widows and children). The fact that the consent for autopsy within a biomedical framework, cultural beliefs are not static or uniform suggests that whichclashedwithcertainsocio-culturalbeliefs.However, increasing autopsyconsent requires comprehensive com- respondentsreportedthatconsentcouldbefacilitated,for munication and awareness intervention strategies aimed example, by mineworkers making their agreement to at an individual, family and community levels. The autopsy clear while being alive and by communicating intervention strategies should not be once-off, but long this intention to ancestors (cid:2) thus providing consent term, and should address the cultural beliefs. consistent with their belief system. ODMWA autopsy awareness and education should be geared towards Studylimitations families and communities of mineworkers. The enablers Although respondents represented heterogeneous groups of autopsy could be used in campaigns to improve inthreeprovincesaffectedbyautopsyandsaturationwas autopsyutilisation.Moreeducationforthemineworkers, reached in each group, the confined study settings may their families and mining communities is required, while have limited the comprehensiveness of the issues identi- the mineworker is still alive to increase awareness and fied and the generalisation of the findings to other discussionofODMWAautopsy’spurposeandbenefits. groups. 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