"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.

1 MB·English

by  Banyini, Audrey V.

(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.
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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.
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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
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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
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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. The respondents were selected by someone they Amending the ODMWA should be considered so
knewandtrusted.Theymayhavesaidwhattheythought that the current requirement of formal consent after
106 Citation:GlobHealthAction2013,6:19518-http://dx.doi.org/10.3402/gha.v6i0.19518
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