Clinical Ethics in Gabon
The Spectrum of Clinical Ethical Issues Based on Findings from In-Depth Interviews at Three Public Hospitals
Dissertation zur Erlangung des Doktorgrades der Medizin in der Medizinischen Hochschule Hannover
vorgelegt von Daniel Rainer Sippel
aus Nürnberg
der Medizinischen Hochschule Hannover
Gedruckt mit Genehmigung der Medizinischen Hochschule Hannover.
Präsident: Prof. Dr. med. Christopher Baum Wissenschaftliche Betreuung: Prof. Dr. med. Dr. phil. Daniel Strech
1. Referent: Prof.‘in Dr. rer. biol. hum. Marie-Luise Dierks 2. Referent: Prof.‘in Dr. med. Petra Garlipp
Tag der mündlichen Prüfung: 06.03.2018
Prüfungsausschluss:
Vorsitz: Prof.‘in Dr. rer. nat. Karin Lange
1. Prüfer: Prof.‘in Dr. rer. biol. hum. Marie-Luise Dierks 2. Prüfer: Prof. Dr. phil. Siegfried Geyer
männlicher Sprachformen verzichtet. Sämtliche Personenbezeichnungen bzw. Sprachformen gelten selbstverständlich für alle Geschlechter.
Einleitung 1 Originalarbeit 5 Zusammenfassung 21
Material und Methoden 21
Ergebnisse und Diskussion 22
Relevanz der Studie, Einordnung und Ausblick 27 Literaturverzeichnis 37 Zusatzmaterial der Originalarbeit 39 Interviewleitfaden 39 Erweitertes Kategoriengerüst und Beispielzitate 40 Lebenslauf 57 Erklärung gemäß §2 Abs. 2 Nrn. 6 und 7 PromO 59 Danksagung 61
Die Medizinethik ist so alt, wie die Medizin als schriftlich überlieferte Disziplin. Ein Beispiel hier- für ist der, nach Hippokrates von Kos (ca. 460 bis ca. 370 v. Chr.) benannte, Hippokratische Eid. Auch wenn die Herkunft, das genaue Datum des Erscheinens und die Relevanz in der damaligen Zeit nicht eindeutig gesichert sind (Miles, 2005), so stellt der Hippokratische Eid dennoch ein wichtiges Zeit- zeugnis dar. Er belegt, dass sich Heiler und Ärzte schon früh mit den berufsethischen Anforderungen ihres Handelns beschäftigt haben.
Die Medizinethik hat sich jedoch erst in den letzten Jahrzehnten als eigenständiges Fachgebiet in der Medizin mit speziellen Lehrveranstaltungen im Medizinstudium und in den Pflegeberufen etabliert (Wiesing et al., 2004, S. 17). Heute lernen Medizinstudierende in vielen Ländern, bereits im Studium, was es heißt als Arzt ethisch zu handeln, wobei ethisches Handeln umgangssprachlich oft mit dem guten oder richtigen Verhalten gleichgesetzt wird.
Viele Ethiker sind der Ansicht, dass für Personen im medizinischen Bereich, wie für alle anderen Personen auch, allgemeingültige moralische Prinzipien gelten sollten. Doch wie definiert man diese Prinzipien und können sie tatsächlich allgemeingültig sein? Der medizinische Bereich kann als be- sondere ethische Nische gesehen werden, da er mit speziellen Fragestellungen einhergeht. Dadurch ist eine Bereichsethik, die sich ausdrücklich mit diesen speziellen Situationen und Rahmenbedingun- gen auseinandersetzt, gerechtfertigt. Es handelt sich jedoch „...nicht um eine Sonderethik mit eigenen moralischen Normen, sondern um eine Ethik für ein Handeln in einem besonderen Bereich...“ (Wiesing et al., 2004, S. 30). Auf die Frage der Allgemeingültigkeit ethischer Prinzipien im biomedizinischen Bereich wird in der Diskussion der Originalarbeit und in der anschließenden Zusammenfassung eingegangen.
Die ursprüngliche Anregung zu dieser Arbeit kam durch Gespräche mit mehreren gabunischen Ärzten bei einem Workshop zur biomedizinischen Forschungsethik in Gabun im Jahr 2008 zustande.
Mehrere Teilnehmer des Workshops erklärten, dass die Themen der biomedizinischen Forschung zwar sehr interessant seien, jedoch inhaltlich häufig an ethischen Problemen ihrer täglichen klini- schen Tätigkeit vorbeigingen. Sie würden den Großteil ihrer Patienten außerhalb von klinischen Stu- dien behandeln und es ergäben sich in ihrem klinischen Alltag dadurch oft andere ethische Heraus- forderungen als in klinischen Studien. Diese gabunischen Ärzte bezogen sich auf die klinische Ethik, also das Feld in der Medizinethik, das sich mit der Alltagsethik im klinischen Setting beschäftigt (Vollmann, 2006). Die biomedizinische Forschungsethik und die klinische Ethik im Krankenhaus- alltag sind als zwei unterschiedliche Teilbereiche der biomedizinischen Ethik zu sehen. Ein wesent-
Aus-, Fort- und Weiterbildung in Gabun gäbe. Sie sprachen den Wunsch nach entsprechenden Fort- bildungsangeboten in diesem Bereich aus.
Medizinethische Herausforderungen im klinischen Bereich wurden über die letzten Jahrzehnte in den Ländern der westlichen Welt in nahezu allen klinischen Disziplinen ausführlich untersucht und bewertet. Es existieren große medizinethische Journale wie das Journal of Medical Ethics, das American Journal of Bioethics oder Bioethics, die sich ausschließlich mit medizinethischen Themen beschäftigen. Eine PubMed Recherche nach „Medical Ethics“ liefert eine stetig wachsende Zahl an medizinethischen Publikationen pro Jahr (siehe Grafik 1).
Hierunter finden sich sowohl Arbeiten zur biomedizinischen Forschung, als auch zur angewand- ten klinischen Ethik. All diese Erkenntnisse fließen seit Jahren in die medizinethische Aus-, Fort- und Weiterbildung in den verschiedenen Medizinberufen ein (Wiesing et al., 2004; Kuhse & Singer, 2006;
Jonsen et al., 2010).
In Bezug auf Länder in Sub-Sahara Afrika erhält man jedoch ein anderes Bild. Bei einer Lite- raturrecherche zum Thema biomedizinische Ethik in Afrika, mittels einer bewusst breit gefassten PubMed-Suche mit dem Suchterm “ethics” [MeSH] AND “Africa” [MeSH], findet man hauptsächlich Artikel und Bücher zu ethischen Fragen der biomedizinischen Forschung am Menschen in diesen Ländern. Nur wenige Artikel beschäftigen sich mit Themen der klinischen Ethik. Unter diesen fanden sich Artikel zu verschiedenen spezifischen Herausforderungen wie Datenschutz und informiertes Einverständnis, aber auch zum Umgang mit HIV-Tests, Abtreibungen und Herausforderungen in Bezug auf die weiterhin verbreitete traditionelle Medizin. Einen Auszug solcher Arbeiten findet sich
1944 1946 1948 1950 1952 1954 1956 1958 1960 1962 1964 1966 1968 1970 1972 1974 1976 1978 1980 1982 1984 1986 1988 1990 1992 1994 1996 1998 2000 2002 2004 2006 2008 2010 2012 2014 0
500 1000 1500 2000 2500 3000 3500
Anzahl der Publikationen
Grafik 1: Anzahl der bei PubMed gelisteten Publikationen pro Jahr mit dem Suchterm
“Medical Ethics” von 1944 bis 2015 (Stand: 03/2016).
wie dem zentralafrikanischen Land Gabun, von der in der westlichen Welt zumindest teilweise unter- scheidet. Gründe hierfür sind neben den unterschiedlichen Versorgungsstandards und der Resour- cenknappheit auch der andere soziokulturelle und traditionelle Kontext. Der Einfluss dieser Faktoren wurden bereits bezüglich verschiedener Kulturkreise beschrieben (Fan, 1997; La Puma, 1995; Perkins et al., 1998; Feldman et al., 1999).
Das Ziel dieser Studie war es, zu klären, mit welchen ethischen Problemen medizinische Fach- kräfte in Gabun im Praxisalltag konfrontiert werden. Wo entstehen diese Probleme und wie gehen medizinprofessionelle in Gabun damit um? Um diese, auf den ersten Blick einfach wirkende, Aufgabe fundiert bearbeiten zu können, stellten sich jedoch grundlegendere Fragen. Ein Beispiel ist die Frage nach dem vorherrschenden Ethikverständnis. Um dies zu identifizieren, untersuchten wir, was medi- zinische Fachkräfte in Gabun ganz grundsätzlich unter einem medizinethischen Problem verstehen.
Hierbei war unser Ziel die vorliegenden Umstände, Auffassungen und Einstellungen zu beschreiben und zu untersuchen. Daher wurde ein ethisch-deskriptiver Ansatz ohne normativen Anspruch ver- folgt. Um diese Umstände genauer zu untersuchen, führten wir eine Interviewstudie mit medizini- schen Fachkräften des öffentlichen Gesundheitssystems in Gabun durch.
Es folgt die Originalarbeit, welche im Juli 2015 in PLOS ONE erschien.
Clinical Ethics in Gabon: The Spectrum of Clinical Ethical Issues Based on Findings from In-Depth Interviews at Three Public Hospitals
Daniel Sippel1,2, Georg Marckmann3, Etienne Ndzie Atangana4, Daniel Strech5* 1Department of Neurology, Carl Gustav Carus University Hospital, Technische Universität Dresden, Dresden, Germany,2Center for Regenerative Therapies Dresden (CRTD), Technische Universität Dresden, Dresden, Germany,3Institute of Ethics, History and Theory of Medicine, Ludwig-Maximilians- Universität München, Munich, Germany,4Department of Neurosurgery, University Medical Center Göttingen, Göttingen, Germany,5Institute for History, Ethics and Philosophy of Medicine, Centre for Ethics and Law in the Life Sciences (CELLS), Hannover Medical School, Hannover, Germany
*Strech.Daniel@mh-hannover.de
Abstract
Introduction
Unlike issues in biomedical research ethics, ethical challenges arising in daily clinical care in Sub-Saharan African countries have not yet been studied in a systematic manner. How- ever this has to be seen as a distinct entity as we argue in this paper. Our aim was to give an overview of the spectrum of clinical ethical issues and to understand what influences clinical ethics in the Sub-Saharan country of Gabon.
Materials and Methods
In-depth interviews with 18 health care professionals were conducted at three hospital sites in Gabon. Interview transcripts were analyzed using a grounded theory approach (open and axial coding), giving a qualitative spectrum of categories for clinical ethical issues. Validity was checked at a meeting with study participants and other health care experts in Gabon after analysis of the data.
Results
Twelve main categories (with 28 further-specified subcategories) for clinical ethical issues were identified and grouped under three core categories: A) micro level:“confidentiality and information”,“interpersonal, relational and behavioral issues”,“psychological strain of indi- viduals”, and“scarce resources”; B) meso level:“structural issues of medical institutions”,
“issues with private clinics”,“challenges connected to the family”, and“issues of education, training and competence”; and C) macro level:“influence of society, culture, religion and superstition”,“applicability of western medicine”,“structural issues on the political level”, and“legal issues”.
a11111
OPEN ACCESS
Citation:Sippel D, Marckmann G, Ndzie Atangana E, Strech D (2015) Clinical Ethics in Gabon: The Spectrum of Clinical Ethical Issues Based on Findings from In-Depth Interviews at Three Public Hospitals. PLoS ONE 10(7): e0132374. doi:10.1371/
journal.pone.0132374
Editor:Kenneth Bond, Canadian Agency for Drugs and Technologies in Health, CANADA
Received:November 17, 2014 Accepted:June 13, 2015 Published:July 10, 2015
Copyright:© 2015 Sippel et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability Statement:All relevant data are within the paper and its Supporting Information files.
Funding:This project was funded by intramural funds of Hannover Medical School and University of Tübingen and by the German Academic Exchange Service (DAAD, PKZ P07/07257,www.daad.de/en).
Carsten Köhler, University of Tuebingen, Germany received the fund and invited the authors to participate in capacity building seminars. This project was performed outside these seminars. The funders had no role in study design, data collection and
Discussion
Interviewees reported a broad spectrum of clinical ethical issues that go beyond challenges related to scarce financial and human resources. Specific socio-cultural, historical and edu- cational backgrounds also played an important role. In fact these influences are central to an understanding of clinical ethics in the studied local context. Further research in the region is necessary to put our study into perspective. As many participants reported a lack of awareness of ethical issues amongst other health care professionals in daily clinical prac- tice, we suggest that international organizations and national medical schools should con- sider infrastructure and tools to improve context-sensitive capacity building in clinical ethics for Sub-Saharan African countries like Gabon.
Introduction
For a long time, conceptual and empirical bioethics projects played only a marginal role in Sub-Saharan Africa. As more clinical trials of HIV/AIDS drugs, malaria treatments and vac- cines started to be conducted in Africa, scholars in bioethics and health policy analysis began to study the ethical implications of these clinical research projects, including informed consent issues, post-trial access to trial drugs, and setting-relative risk-benefit analysis [1–4]. Capacity building and infrastructure for research ethics and research oversight has been improved in African countries and supported by various stakeholders. However, clinical ethical issues aris- ing in the doctor-patient relationship and in related decision-making areas have received remarkably little attention and have not been studied in a systematic and comprehensive man- ner. We argue that clinical ethics of everyday practice in the hospital setting has to be seen as a distinct entity compared to research bioethics because of observed and reported differences we cover below. An exploratory PubMed literature search with the search string“ethics”[MeSH]
AND“Africa”[MeSH] revealed a variety of“ethical issues”. However, most of the papers we found concerned research ethics in Africa. Only a few papers looked at clinical ethical issues in Africa. The few conceptual papers on clinical ethics that we found were almost all from South Africa, and dealt with a variety of specific challenges, e.g. disclosure of information, informed consent, HIV-testing, abortion, traditional medicine, palliative care, occupational health, orga- nizational ethics, and just allocation of scarce resources at the physician/hospital level, but didn’t give an overview of clinical ethical issues in the clinical context [5–28].
In 2002, UNESCO made ethics a principal priority and in 2008 it became one of five over- arching objectives in the“UNESCO Medium Term Strategy 2008–2013”[29,30]. In 2005, the
“Universal Declaration on Bioethics and Human Rights”was unanimously adopted by the UNESCO member states. Furthermore the“Global Ethics Observatory”[31], a set of free data- bases“. . .intended to become a crucial platform for supporting and advancing ethics activities by assisting Member States and other interested parties to identify experts, establish ethics committees, construct informed policies in the area of ethics, and design ethics teaching curric- ula”[32] was established by UNESCO. However, just as in bioethical research, the principal focus was on capacity building of national ethics committees for research oversight and health care reforms [33,34] and not on clinical ethics in the everyday hospital setting.
The aim of this study was to analyze the spectrum of clinical ethical issues in various health care settings in a Sub-Saharan country (Gabon) and determine the factors leading to and influ- encing the issues that were reported. We therefore chose a qualitative research approach, as
analysis, decision to publish, or preparation of the manuscript.
Competing Interests:The authors have declared that no competing interests exist.
this is the best mean to get insights into the topic of clinical ethics in Gabon. Qualitative research in the form of openly conducted in-depths interviews allows for a more comprehen- sive insight into the spectrum of ethical issues that health care professionals in Gabon face in their daily work compared to a questionnaire or other quantitative approaches that could aim at, for example, the investigation of how often these issues occur [35]. For the analysis of the interviews we framed the classification of an“issue”as an“ethical issue”in a rather broad sense as we did not want to exclude any issue that one would not instantly classify as“ethical issue” when coming from a western philosophical background where medical ethics is mostly based on the rather fixed principlism framework (for a detailed analysis of this, see thediscussion section).
Background information
An idea of the socio-cultural, historical, educational and economic context of this country is helpful as this may influence ethical concepts as a whole and therefore the perception and the handling of concrete ethical issues in the local setting [36–38].
Gabon is a natural resource rich former French colony, which reached independence in 1960. It is located on the west coast of Central Africa at the equator. It has an estimated popula- tion of 1.67 million (2014 est.) with 86% (2011 est.) living in urban areas. 55%-75% are of Christian faith, the rest being animist, Muslim (<1%) and others. The literacy level is esti- mated at 92.3% for males and 85.6% for females (1995). The official national language is French. It is taught in schools and spoken by the vast majority of the population. However the Gabonese people is composed of over 40 different Bantu tribes with partly completely different tongues. The infant mortality rate is 47 deaths/1000 live births and the life expectancy at birth is 52.06 years (2014 est.). The official HIV/AIDS adult prevalence rate is 4% (2012 est.) making Gabon the country with the 16th highest prevalence worldwide. The total expenditure on health is around 3.2% of Gabon’s GDP (2011). The physician density is 0.29 physicians/1000 (2004) compared to 3.5 physicians/1000 (2008) in Germany or 2.7 physicians/1000 (2004) in the USA. With a per capita GDP of $19,200 (2013 est.)“Gabon enjoys a per capita income four times that of most sub-Saharan African nations”. The unemployment rate is estimated at 21%
(2006 est.) (all of the above information from [39]). Gabon’s Human Development Index (HDI) is 0.674 placing it well above the Sub-Saharan African average of 0.502 [40].
Financial situation of health care in Gabon. Unfortunately there is no official data avail- able about the financial situation of the mentioned hospitals and the health insurance status in Gabon. According to study participants all three hospitals suffer from underfinancing and scar- city at different levels. Even though there are private health insurance plans and government health insurance programs like the“Caisse Nationale de Sécurité Sociale”(CNSS) interviewees pointed out that the vast majority of people is uninsured and has to pay cash to receive medical treatment. People who can afford it may go to private clinics or the military hospital outside of Libreville, which are far more expensive than public hospitals. The level of medical treatment was said to be highly dependent on the financial resources of the patient and his relatives or close peers (seeResultssection).
Traditional medicine. Traditional medicine has a strong background in Gabon and still plays an important role today [41]. Traditional healers can be found in rural areas as well as in the capital. Consequences of this like supernatural claims, non-evidence-based treatments, dosage inaccuracies and false diagnoses are common according to interviewees and the litera- ture [13].
MaterialsandMethods
Hospitalsincludedinthisresearchprojectwere1)theCentreHospitalierdeLibreville(CHL), thebiggestandfairlywell-equippedmedicalinstitutioninGabonservingLibreville’s619,000 [39] inhabitants,andpatientsfromtherestofthecountry,2)theHôpitalAlbertSchweitzer (HAS),aregionalhospitallocatedintheup-countrycityofLambarénéwithlimitedtechnical equipmentand3)theHôpitalPsychiatriquedeMelen(HPM)justeastofLibreville,whichis theonlypublicpsychiatrichospitalinGabon.Thesehealthcareinstitutionsareagoodrepre- sentationofhowhealthcareisdeliveredtomostofthepeopleinGabon.Forexample,people fromalloverthecountryoftentakegreateffortswhenseverelysicktogettreatedinthebest- equippedpublichospital,theCHL,astheyhopetogetbettertreatmentthereaccordingto interviewees.Furthermore,weconductedinterviewsalsoataruralhospitalandattheonlyhos- pitalforpersonswithmentalillnessesinthecountry.Theprivatehealthcaresectorisn’tacces- sibletoamajorityofthepeoplebecauseofhighpricesandwasn’tincludedinthisstudy.
&UIJDT4UBUFNFOUWeobtainedtheconsentandapprovalofeachofthethreehospital administrationsforourstudy,andtoconducttheinterviewsonsite.AccordingtoGermanand Gaboneseregulations(PharmaceuticalandMedicalDevicesLaws,MedicalProfessionalLaw) noethicsapprovalisnecessaryforsocio-empiricalresearchthatdoesnotinvolvepatients.The localIRBsatthethreestudiedhospitalsitesinGabonwereinvolvedintheprocessof
developingourresearchproject.Twomembersoftheauthorgroup(GMandDSt)were involvedincapacitybuildingeffortsforfuturemembersofthelocalIRBs.Priortoeach interviewtheparticipantsreceivedaninformationsheetexplainingthestudyrationale,the studydesignandthelaterreportingofanonymizeddata.Thepotentialintervieweeswerethen askedwhethertheywerewillingtopar-ticipateinthisinterviewresearchproject.Duringthe introductionphaseoftheinterviewsweexplainedagaintheabovementionedstudyrationale andtheplannedreportingofanonymizeddataandmadesurethattherewereno
misunderstandings.Consentwasthenconsideredtobeimpliedwhenparticipantsagreedtobe interviewedandparticipatedinthestudy.
Purposivesamplingwasemployedtorecruitparticipantscoveringdifferenthealthcarepro- fessionsandclinicalspecialties.Weinterviewed18experiencedmedicalprofessionalsworking inthefollowingareas:internalmedicine,infectiousdiseasesincludingHIV/AIDS,intensive care,neonatology,pediatrics,gynecologyandobstetrics,psychiatry,generaloutpatientclinics, socialassistanceandnursingmanagement.Theinterviewswerethenheldonsiteatthese hospitals.
Weusedasemi-structuredinterviewguidethatincludedopenquestionsabouttheunder- standingofclinicalethics,theethicalissuesparticipantsencounterinclinicalpractice,theprac- ticalrelevanceoftheseissues,andhowtheydealwiththem.AshortenedEnglishversionofthe interviewguidecanbefoundassupportinginformation(S2File).Theprincipalobjectivewas tostimulatedetailedreportsonthegeneralunderstandingofmedicalethics,differentexperi- encesofclinicalethicalissuesandtolearnwhattheparticipantsfoundtobeimportantwithout givingtomuchofadirectiveduringtheinterviews.
Overall,18semi-structuredin-depthinterviewswereconducted(n=13byDSialone,n=2 byDSiandDSttogether,n=2byDStandGM,n=1byDStalone).AuthorsDSiandDSthad workingexperiencesinhospitalsinGabonoranotherSub-SaharanAfricancountrythrough clinicalelectives(3–10months).ThemaindatacollectiontookplaceinNovember2009,while ameetingtodiscussresultsoftheinterviewdatawithintervieweesandotherGabonesehealth careprofessionalswasheldinNovember2010.EightinterviewswereheldattheCHL,eightat theHASandtwoattheHPM.Theparticipantsincludedtenphysicians,sixheadnurses (includingtwomidwives),onesocialworker,andonenursemanager(overall11femalesand
sevenmales).Allwereexperiencedspecialistsintheirrespectivefieldswhohadbeenactivefor atleast3years.FourteenparticipantswereofAfricanandfourofnon-African(Europeanand SouthAmerican)origin.
TheinterviewswereconductedandaudiorecordedinFrenchinaface-to-facesettinginthe participants’workingenvironment.Thedurationoftheinterviewswasbetween19and67 minutes,withameanof37minutes.14interviewslastedmorethat32minutes.Duetotime restrictionsoftheparticipants3interviewswereshorterthan32minutes,withtheshortest being19minuteslong.NativeFrenchspeakerstranscribedtheaudiorecordings,which resultedinanoveralltextvolumeof72,135words.Thetextanalysisandcodingwasdonein French.Theentirecodesystemandselectedquotesusedforthispublicationanditssupporting informationwerethentranslatedintoEnglish.MAXQDA(Version10,VERBIGmbH)was usedforqualitativedataanalysis.
AGroundedTheory(GT)[42]approachwasusedforthequalitativeextractionofthemes.
Atfirst,12interviewswerereadandstudiedintensively.Statementsandtextfragmentswere labeledandcategorizedintobroadthemes(opencoding)andmemoswereadded.Inasecond step,theseinterviewsandtheircodingswerereadagain,themaincategorieswereconnected throughconceptuallinks,diversifiedandcomplementedbyfirstandsecondordersubcatego- ries(axialcoding).Duringthisstepthemaincategoricalframeworkwasdeveloped.After- wards,theremainingsixinterviewswereanalyzedusingthesamemethods.Nonewmain categoriesandfirst-ordersubcategoriesneededtobeestablished;onlysecondandthird-order subcategorieswereamended.Therefore,categorysaturationandtheoreticalsaturationwere achievedforthemaincategoriesandfirst-ordersubcategories.Thiscanbeinterpretedasevi- denceforthevalidityofthemaincategoricalframeworkandasamplesizeofsufficientextent [42].Becausewewereprimarilyinterestedinassessingthespectrumofclinicalethicalissuesin thestudiedcareenvironments,werefrainedfromthethirdstepofGTanalysis(theoreticalcod- ing),inwhichthedataaremergedintomoreabstracttheoreticalcategoriesandtheemerging theoryisrefined.
Thewholecategoricalframeworkwasderiveddirectlyfromthetextusingsystematictext analysisandinterpretationofstatementsandtextfragmentsfromtheinterviews.
Aftermaindatacollectionandanalysisofthedatawescheduledameetingwithparticipants ofourinterviewstudyandotherhealthcareprofessionalsandrepresentativesofGabonaswell aslocalethicsscholars.Thisincludedtheheadofthenationalcollegeofphysicians(Ordredes MédecinsduGabon).Thegoalwastopresentourdata,engageinadiscussionaboutourfind- ingswiththeabove-mentionedparticipants,aswellasclarifypotentialmisunderstandingsand misinterpretationofthedata.Afterpresentingourfindingsanddiscussingitwiththe14partic- ipantsofthemeetingnorevisionstoourcoreframeworkhadtobemade.Wewereassuredof thefacevalidityofourfindingsregardingthesaturationofthespectrumofethicalissuesexpe- riencedbyhealthcareprofessionalsinthepublichealthcaresectorasawhole.
Results
Twelvemaincategoriesemergeddescribingissuesthattheinterviewedhealthcareprofession- alsofGabonencounteredintheirpracticeandwhichtheyclassifiedasethicalissues.These couldbegroupedintothreecorecategoriesaccordingtowheretheissuesprimarilyarise:the micro,mesoandmacrolevelofhealthcare.Eachofthe12maincategoriesconsistedoftwoor threefurther-specifiedsubcategories(28firstordersubcategoriesintotal).SeeFig1.
Themicrolevelofhealthcarecomprisesissuesoriginatinginthedoctor—patientrelation- ship,theinteractionsofclinicalstaffandtheself-understandingoftheseindividuals,aswellas scarceresourcesofthepatient,familyandclosefriends.Themesolevelcomprisesissueswith
Fig 1. The spectrum of clinical ethical issues.Issues are grouped into three core categories, 12 main categories as well as 28 further-specified subcategories. Descriptions and examples of these subcategories are given. Issues are grouped to the level where they primarily arise.
doi:10.1371/journal.pone.0132374.g001
rootsattheorganizationalandinstitutionallevel,forexamplehospitals,schools,educationand trainingofhealthcarepersonnel,aswellasthefamilyasinstitution.Themacrolevelcomprises issuesarisinginthecultural,sociological,religious,economicandpoliticalcontext.
Allthreelevelsareinterdependentandthereforeinfluenceeachother.Forexample,the issueofwhoisinformedaboutanillnesswasdescribedasbeinginfluencedbyculturaland societalvariables(macrolevel).Butitisalsorelatedtowhereandhowstaffmemberswereedu- catedregardingprofessionalcommunicationandconfidentiality(mesolevel).Finally,thephy- siciandecidesatthemicrolevel(inaspecificworkingenvironment)howtohandlepatient informationandconfidentialityinrelationtoaspecificpatient.
Formultiplereasons,itisimpossibletodisplayalltheoriginalquotesusedtobuildthedata- baseunderlyingthecategoricalframeworkpresentedinFig1.Fortechnicalanddidacticrea- sonswealsorefrainfrompresentingamorefine-grainedframeworkwithsubcategoriesof secondorthirdorderasthiswouldrenderthefigurelesscomprehensible.However,asupport- inginformationdocumentcontainingamorecomprehensiveoverviewoftheresultsand examplequotessubstantiatingthecategoriescanbefoundonline(S1File).Inthefollowing,we presentsomeclinicalethicalissuesinmoredetail.Werefrainedfromattributingthequotesto specificparticipantroles(nursevs.physician,whichhospitaletc.)becausethiswouldharmour obligationtopreserveparticipantanonymityasforexampleforsomespecialtiesthereisonly onephysicianattheHAS.
Clinicalethicalissuesatthemicrolevel
Confidentialityanddisclosureofinformation. Severalfactorsseemtoinfluencethe degreetowhichmedicalprofessionalsinformedthepatientandtheirrelatives.Afteranalysisof thedatawecouldrecognizefactorsliketheintellectuallevel,genderandpsychologicalstateof thepatientandrelatives,themedicalconditionandprognosis,andwhopaidforthetreatment.
Welearnedthatthepersonwhopaidforthetreatmentoftenreceivedmorethoroughinforma- tion,sometimesevenmorethanthepatienthimorherself,andattimeswithoutthepatient’s consent.ConcerningconfidentialityinthecontextofHIV/AIDS,wereceiveddifferentanswers rangingfromthestaffbeing“obligedtotellthehusband”(ifthepartnerwasHIVpositive),to being“underoath”thuskeepingconfidentiality,ora“dutytopersuade”thepatienttotellhisor herpartner.
Interpersonal,relationalandbehavioralissues. Severalcomplianceissuesweredescribed ascausingtensionbetweenthestaffandpatients/relatives,includingleavingthehospital againstmedicaladvice,drugnon-compliance,missingappointments,accusationsandmisbe- haviorarisingfromspecifictypesofundesireddiagnoses.Someparticipantsfounditdifficult toacceptthatsomepatientswerenotinterestedinthediseaseandthatsomerelativesfocused mainlyonthecostsofcare.
Severalintervieweeshighlightedtheriskofsubordinatingpatientcaretonon-medical,sec- ondaryinterests,orapplyingprivateconvictionsatwork(e.g.regardingabortion).Thequality ofcommunicationbetweenstaffandpatientsandtheirrelativeswasalsocriticized.Somephy- siciansweresaidtoworkatprivateclinicsbesidesworkingatthepublichospital.Onepartici- pantcomplainedthatphysicianshadtheir“business”runningalongside.Forheritwas necessaryto“changethementalities”regardingworkingmoralitytoimprovepatientcare.
Psychologicalstrainofindividuals. Wefoundoutthatpsychologicalstrainnotonly resultedfromissuesofthemedicalmilieuingeneral(e.g.severediagnosis,endoflifedeci- sions),butalsofrominfluencessuchasthelackofresourcesandmismanagement(seerespec- tivepassages).
Scarceresources. Intervieweesreportedthatbecauseoffinancialconstraintsonthe patient’s/relatives’side,physicianssometimescouldonly“dotheminimum”astherewereno meanstobuydrugs,performmedicaltests,ortohospitalizeapatientwithasevereillness.At timesfamiliesweresaidtoabandonpatientsbecauseofhighcosts,whichresultedinconsider- ablepsychologicalstrainforeverybodyinvolved.Whilesomesawtheunderlyingproblemin thelackofhealthinsurance,socialsecurity(seemacro)andgeneralpoverty,othersthought thatpatientsandtheirrelativesalsohadadutytocontribute.Interestinglytheinterviewedstaff didn’tdirectlycomplainabouttheirownfinancialsituations.
Clinicalethicalissuesatthemesolevel
Structuralissuesofmedicalinstitutions. Accordingtoparticipantsclinicalethicalissues wereoftenrelatedtoageneralshortageofstaff,especiallyofspecialists(psychiatry,oncology, psychology,socialworkers).Weweretoldthatrelativeshadtotakechargeofnursing,nutrition andhygienetocompletethecarepackage,whichresultedindisadvantagesforabandoned patientsorpatientswithoutalargecaringfamily.Furthermore,favoritismwasdescribedas playingaroleinstaffrecruitmentaswellasinwhetherpatientsgotadmittedornot.Allofthe aboveweresaidtocontributetopsychologicalstrainonstaffaswellasonthepatientsand relatives.
Otherethicalissuesatthemesolevelincludedunequalaccesstohealthcare,especiallyin ruralareas,forexampleHIV/AIDSinformationprograms,outpatientandrehabilitativecare.
Again,welearnedthatnotallaccesstocareissueswereduetoscarceresources.Amajorprob- lemwasseenintheinadequatemanagementoftheinstitutions’availableresources.Corruption andorganizationalincompetenceresultedininefficientutilizationofalreadyscarceresources accordingtoparticipants:“thetechnicallevelisprobablynotverydeveloped,butwiththemini- mumthatwehave,wecoulddoalotofthings.”
Issueswithprivateclinics. Whilewedidn’tinterviewthestaffofprivateclinics,interview- eesnonethelessrelatedsomeethicalissuestotheroleofprivateclinics.Itwasarguedthatpri- vateclinicsfocusedratheron“simplepathologies”andmakingmoney,sendingawaymore complicatedpatientswithmoreexpensiveandcomplicatedconditions.Thesepatientsthenhad tobetreatedinapublichospital.
Issuesrelatedtothefamily. Weconsideredpatients’familiesassocialinstitutionsand thereforeplacedtheseissuesatthemesolevel.Supportiverelativeswerereportedtobevery importantincaseofseriousillnesses,andhighexpectationswereplacedonthefamily,who oftenhadtoputasideotherdutiesorotherfamilymembersathometocarefortheill.We learnedthatthisdemandcould“paralyze”thewholefamily.Theinterviewedhealthcarepro- fessionalsdescribedtheirdifficultiesengaginginthesecomplexinterrelationsandaccepting familiesabandoningpatientsduetoscarceresources:“it’struethatpeoplesaytheAfricanfam- ilyisbig,butassoonasyouaresickformorethanaweekatthehospital,youmighthaveno morefamily”.Besidesthedurationandcost,otherreasonsforabandonmentofpatients,that werementioned,includedtheparticularillness,especiallyinthecaseofHIV/AIDSandpsychi- atricillnesses.Further,medicalprofessionalsdescribedmoraldistresswhencaringfor orphanedchildren,astheyoftendidn’tgetanyofficialsupportdespitethegoodwillofhealth careprofessionalsandinstitutions.
Issuesofeducation,training,competenceandskillsofstaff. Intervieweesregardededu- cation,training,competenceandskillsaskeyelementsforgoodhealthcareandadequatecon- ductinethicallychallengingcases.Aparticipanthighlightedanoften-experiencedlackofself- criticismbysomestaffmembers.ShesaidthatseniorphysiciansmostlytrainedinFrancedur- ingthe1960s–1980swhenphysicianshadaratherpaternalisticandself-confidentattitude
towardstheirpatients.AftertheirspecializationtheywouldcomebacktoGabon,practiceand teachtheirstudentshowtheyhadlearned.Mostparticipantssaidthattheyhadnotreceived anyexplicitethicseducation,eitheratmedicalschoolorfromcontinuingeducation.Onepar- ticipantargued:“Ethicsisonlyperceivedasaresearchterm,that’salltheyknow,butbefore arrivingatresearch,thereisethicsofeverydaylife”.Howeverallparticipantssaidthatethicsand ethicseducationwereimportantandshouldbeimproved.
*TTVFTPGFEVDBUJPOUSBJOJOHDPNQFUFODFBOETLJMMTPGQBUJFOUTSFMBUJWFTEducation andcom-petencewerealsoconsideredtobeimportantonthepatients’andrelatives’side.
Severalpartic-ipantstoldusaboutmanifoldissuesinthisarea.Uneducatedpatientsand relativesalsoweresaidtocauseconflictsasthestaffsometimeshadto“submit”tothelesser educated.
Clinicalethicalissuesatthemacrolevel
Influenceofsociety,culture,religionandsuperstition. Intervieweesreportedthattradi- tionallythefamilyplaysacentralroleinGabonesesociety,whichinfluencedhowtheyinformed therelatives,astheythoughtthefamilyhadarighttoknowwhatwasgoingon.However,itwas alsodescribedthatthishasbeenchangingasthedevelopmentintoamoreindividualistic societycouldbeseen.Interviewedhealthcarepractitionersfaceddilemmasinsituationswhere itwasuncleartothemwhethertoinformpatientsandrelativesinthetraditionalwayornot.
Oldconvictionsstillseemedtoplayanimportantrole.Oneparticipantevensaidthatthey were“imprisonedinthetradition”astohowillnesseswereperceivedandtreated.HIV/AIDS, cancerandmentaldisorderswerestillcommonlyseenas“mysticalillnesses”bypatientsbutalso byhealthworkers,asevensomestaffmembersdescribedpsychiatricillnessesas“mystical”.
“Mysticalillnesses”appearedasapunishmentforwrongdoingtosome.Oneexamplethatwas givenisthatonecontractsHIVanditssecondarydiseases“becauseyoudidsomethingwrong [inlife]”.Inconsequencewelearnedthatpatientswith“mysticalillnesses”,aswellaswomen whoundergoillegalanddisrespectedabortions,riskedstigmatization,abandonmentandthat thesepatientswouldoftenhaveahardtimetoreintegrateintosocietyoncetheyrecovered.
These“mystical”beliefsmustbeseenaspartofthelocalcontextandtradition.InmanyAfrican traditionalreligionstheconceptsofspirits,ancestralspiritsandspiritpossessionplayan importantroleandarestillverypresenttoday[43].Sometimesthesebeliefsystemsleadtoclin- icalethicalissuesasinthecaseofpsychiatricillnessesthatareoftenregardedas“mystical”. Healthcareprofessionalsfaceethicaldilemmasinhowtorespondtotheseconvictions.
Oneparticipantproposedthatclinicalethicswasaproblemof“richcountries”andthatthere weremoreimportantissuestodealwithbeforeconsideringethicsmoreexplicitlyinmed-ical trainingandcontinuingeducation.Anexampleofamorepressingissuebythisparticipantwas thebadconditionofmedicalequipmentandthelowlevelofadvancedmedicaltechnologyin Gabon.Howeverseveralparticipantsstronglydisagreedandsawitasaveryimportanttopic thatneededtobeaddressedinparallel.
"QQMJDBCJMJUZPGXFTUFSONFEJDJOFAphysiciansuggestedthatwesterndiagnosticsand therapyguidelinesweren’tapplicableinGabonbecauseofadifferentpopulation(majorityof peoplewithAfricanoriginvs.mostlyCaucasiansubjectsinmostclinicaltrials)andalsoalack ofresources(officiallyrecommendedtreatmentoptionsoftennotavailable)leavingherwithout evidence-basedtreatmentoptions.Becauseofresourcelimitationsshesaidthatsheneededto pursuea“masspolicy”forherpatientsratherthanan“individualpolicy”,notdoingjusticeto everypatient.
4USVDUVSBMJTTVFTBUUIFQPMJUJDBMMFWFMThehealthcareinstitutionsweredescribedas being“politicized”,meaninghighlyinfluencedbypolitics.Intervieweessawthisinalackof continuity,withadministratorswhosaidtooftenbeswappedforpoliticalreasons.Healthcare professionalsatlowerorganizationallevelsreportedittobedifficultto“change”anything.
Legalissues. Weheardabouta“judicialvacuum”thatledtomedicalethicalissues.One examplegivenwasthehandlingofneedlestickinjuriesandthelackofcompensationforwork injuriesingeneral.Alsotheunclearjudicialsituationoverthedetentionofpsychiatricpatients wasseenasanissue,asitwasreportedlyrelativelyeasytolocksomeoneupwithoutlegal restrictions,whichgavealotofpowertopsychiatrists.
DiscussionandConclusion
Thisqualitativeanalysisof18in-depthinterviewspresentsthequalitativespectrumofclinical ethicalissuescurrentlyencounteredbyphysicians,nurses,midwives,andsocialworkersindif- ferentpublichealthcareenvironmentsinGabon.
Inmostphysiciancodicesethicalissuesrefertotheethicaltheoryofprinciplism[44,45].In theoriginaltheoryformedicalethicsprinciplismisbasedonthefourbasicprinciplesofnon- maleficence,beneficence,respectforautonomy,andjustice.Intheethicaltheoryofprinciplism thesebasicprinciplesrepresentprimafaciebindingmoralnormsthatoneneedstoobeyunless theyconflictwithanequalorgreaterobligationinaparticularcase.Whenthisapproachis applied,theprincipleshavetobespecifiedandbalancedagainstoneanotherifaconflictarises.
Withrespecttotheprinciplismapproach,anethicalissueinclinicalpracticemightarise(a) becauseoftheinadequateconsiderationofoneormoreoftheseethicalprinciples(forexample:
insufficientconsiderationofpatientpreferencesinhealthcaredecisions)or(b)becauseofcon- flictsbetweentwoormoreofthementionedbasicethicalprinciples(forexample:balancingthe principlesofpatientautonomy,non-maleficenceandjusticeinacasewhereaHIVpositive patientwon’ttellthespouseofthesero-positivitypotentiallyharmingthepartner).Seealso Strechetal.2013[46].Whileothertheoreticalapproachesfordescribingethicalissuesexist, thisisbeyondthescopeofthisarticle.Foranoverviewofconceptssuchascasuistry,virtueeth- icsorcareethicsseeforexampleSugarmanandSulmasy(2010)[47].
Fortheinterviewstudy,howeverwerefrainedfromintroducingaspecificunderstandingof ethicalissues.First,itisquestionablewhether,forexample,thecoreprinciplesasdefinedinthe originalversionofprinciplism,arethesameinGabon.Second,weaimedtonotbiastheinter- viewees’responses.Ifwewouldhaveappliedsomesortofdirectiveornarrowdefinitionofwhat anethicalissueisbeforehand,wecouldhavemissedcertainissuesandwouldnothavebeen abletoaccountforthefullspectrumofclinicalethicalissues.Framingthenotionof“ethi-cal issue”morebroadlyinthemedicalsectorhasbeensuggestedbefore[48].Inouranalysisofthe interviewtranscriptswethereforeacceptedalldescribedissuesasethicalissueswhen1)they wereconsideredan“ethicalissue”bytheparticipantand/or2)theyinvolvedsomesortof moraldecisionmaking,weighingtheconsequencesoneitherthemicro(“personallevel”,e.g.
doctor-patientrelationship),themeso(“institutionallevel”,e.g.thehospital),orthemacro (“overarchinglevel”,e.g.stateorsociety)level.
IntheintroductionwementionedthatonlyfewpapersonclinicalethicalissuesinSub- SaharanAfricacanbefoundintheliteraturetodate.Moststudiesonethicsinmedicinedeal withbiomedicalresearchethics,whichistobeseenasadistinctentitybecauseofthedifferent setting(researchsettingvs.everydaypracticeinthehospitalsetting).Anexampletoclarifythis isinformedconsent.Oneintervieweesaidthatatherdepartmentshewas“theonlyonetodo it”,“it”beingwritteninformedconsentbeforeapotentiallydangerousmedicalprocedure.In
