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Page 1: PAPER Ethical precepts for medical volunteerism: including ... · Ethical precepts for medical volunteerism: including local voices and ... two Rwandan cardiologists, ... held in

PAPER

Ethical precepts for medical volunteerism:including local voices and values to guideRHD surgery in RwandaMarilyn E Coors,1 Thomas L Matthew,2 Dayna B Matthew3

1Department of Psychiatry andCenter for Bioethics andHumanities, University ofColorado Anschutz MedicalCampus, Aurora, Colorado,USA2Department of Surgery, HeartCenter of the Rockies,Longmont, Colorado, USA3University of Colorado Schoolof Law, Boulder, Colorado,USA

Correspondence toDr Marilyn E Coors,Department of Psychiatry andCenter for Bioethics andHumanities, University ofColorado Anschutz MedicalCampus, 13080 East 19thAvenue, B137, Aurora,CO 80045, USA;[email protected]

Received 8 July 2013Revised 20 April 2015Accepted 13 May 2015Published Online First11 June 2015

To cite: Coors ME,Matthew TL, Matthew DB. JMed Ethics 2015;41:814–819.

ABSTRACTAt the invitation of the Rwandan Government, TeamHeart, a team of American healthcare professionals,performs volunteer rheumatic heart disease (RHD) surgeryin Rwanda every year, and confronts ethical concerns thatcall for cultural sensitivity. This article describes how fivestandard bioethical precepts are applied in practice inmedical volunteerism related to RHD surgery in Rwanda.The content for the applied precepts stems fromsemiscripted, transcribed conversations with the authors,two Rwandan cardiologists, a Rwandan nurse and aRwandan premedical student. The conversations revealedthat the criteria for RHD surgical selection in Rwanda areanalogous to the patient-selection process involvingmaterial scarcity in the USA. Rwandan notions of benefitand harm focus more attention on structural issues, suchas shared benefit, national reputation and expansion ofexpertise, than traditional Western notions. Harm causedby inadequate patient follow-up remains a criticalconcern. Gender disparities regarding biological andsocial implications of surgical valve choices impactconsiderations of justice. Individual agency remainsimportant, but not central to Rwandan concepts ofjustice, transparency and respect, particularly regardingwomen. The Rwandan understanding of standardbioethical precepts is substantively similar to thetraditionally recognised interpretation with importantcontextual differences. The communal importance ofimproving the health of a small number of individualsmay be underestimated in previous literature. Moreover,openness and the incorporation of Rwandan stakeholdersin difficult ethical choices and long-term contributions toindigenous medical capacity appear to be valued byRwandans. These descriptions of applied precepts areapplicable to different medical missions in other emergingnations following a similar process of inclusion.

INTRODUCTIONAlthough rheumatic heart disease (RHD) is virtu-ally eradicated in the USA, it is the most commoncardiovascular disease among children and youngadults in sub-Saharan Africa.1 2 In the Republic ofRwanda, the most densely populated nation on theAfrican continent, approximately 1.4% of its popu-lation of 11 million dies from RHD annually. Eventhough for over 50 years, low-cost, proven anti-biotic prophylaxis has been effective in eliminatingthe disease throughout the West, it remains largelyunavailable in Rwanda. Since 2007, a developmen-tal team of US healthcare professionals named‘Team Heart’ has partnered with the Rwanda Heart

Foundation, the Rwandan Ministry of Health andthe people of Rwanda to address RHD. TeamHeart is one of four Western surgical teams thatcollaborate to build surgical capacity in Rwanda.Although Team Heart has performed over 100open-heart procedures, the long-term goal is tosupport Rwandan professionals as they build anindependent, comprehensive heart programme toaddress RHD and the nation’s other cardiac needs.The programme aims to include cardiac screening,preventative treatment and surgical capacity deliv-ered through Rwandan professionals.3 4

Prior to the American team’s arrival in the hostcountry, Rwandan cardiologists in the capital cityand in rural districts evaluate patients who havebeen referred by Rwandan physicians and health-care workers, typically presenting with ‘shortnessof breath’. For these patients, no treatment islocally available in the district hospital outside thecapital city of Kigali. Thus, primary care providersrefer patients with RHD to Rwandan cardiologistsfor assessment. In this way, the Rwandan healthcaresystem, enhanced by a growing in-country screen-ing programme, identifies patients eligible for surgi-cal consideration. Approximately 1 week before theentire medical team arrives, a Team Heart cardiolo-gist and echocardiographer arrive in the country toreview the Rwandan referrals. The American cardi-ologist screens between 75 and 80 patients in theclinic to identify the best surgical candidates topropose to the team. Together, on the first day ofthe team’s arrival, Rwandan and American cardiol-ogists and the Team Heart cardiovascular surgeonsmeet to review the 20–25 patients referred andselect those who will receive surgery. Following alengthy and difficult meeting, patients are selected,their referring physicians are contacted and the sur-geons meet the chosen patients for final prepar-ation for surgery.The setting of medical volunteer work in

Rwanda shares many contextual features with workin other low-income and middle-income countries,including limited medical resources and person-nel,5 6 inadequate access to preventative health-care,7 8 harsh living conditions and limited accessto clean water,9 10 sexism,11 language barriers12

and the history and threat of political violence.13 Inaddition to these challenges, the team confrontsethical concerns or questions that are likely to beunique to Rwanda. For example, the Rwandanvalue placed on communal rather than individualand autonomous medical decision-making, and the

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essential value placed on a woman’s ability to bear children,especially in rural Rwandan communities, presents uniqueethical issues seldom confronted in the American context.

The objective of this article is to describe how five familiarbioethical precepts can be applied in practice to medical volun-teerism related to RHD surgery in Rwanda.14 This descriptionincorporates voices of Rwandan healthcare professionals toclarify meaningful content for traditional precepts, for exampledescribing the harms and benefits of RHD surgery from theRwandan perspective. This article takes the position that ethicaldecision-making and analysis of impact on the host communityshould incorporate cultural values and practices important tothe host community. This task requires intellectual honesty, self-scrutiny, cultural humility and inclusion of local voices.15 Thisarticle adds a new dimension to ethical decision-making andanalysis of impact on the host community that entails culturalawareness and sensitivity to Rwandan moral traditions, valuesand practices as an exemplar of one developing nation.

The literature calls for guidance for short-term medical volun-teers through the culturally appropriate understanding of ethicalprecepts used in Western nations. The ethics of medical volun-teer trips is neither a ‘well-developed’ field nor an area of‘intense debate’, reflected in a paucity of literature, especiallywhen compared with international research ethics.16–23 Thisarticle seeks to initiate a discussion by exploring the ways inwhich five long-acknowledged bioethical precepts, which aretraditionally defined for the therapeutic relationship, areapplied in and informed by the Rwandan context. This, in itself,is a difficult task. Frequently, we assume that Westerners under-stand fundamental bioethical precepts. Yet, on further examin-ation, it becomes apparent that these precepts are complex, andinterpretations are debatable when applied to technologies inAmerica.24 The imperative to understand a traditionally Westernprinciple in the context of medical volunteerism takes ongreater urgency when seeking to develop a full partnership andcollaboration with partners in a developing nation.

METHODSTo better understand the Rwandan context, the authors askedRwandan professionals to respond to scripted queries designedto explore the ethical precepts that guide their participation inthe partnership with the American team. The authors partici-pated in individual, semiscripted and transcribed conversationswith Rwandan professionals, including two Rwandan cardiolo-gists, a Rwandan nurse and a Rwandan premedical student,which lasted for approximately 45 min. The conversations wereheld in Rwanda with the exception of a phone conversationwith the Rwandan medical student who was studying in theUSA. These semiscripted conversations were inspired by priorinformal conversations that arose as one author accompaniedthe team, and worked to improve the medical volunteer pro-gramme. Although the conversations were not a part of aresearch project, each person gave his/her permission. TheColorado Multiple Institution Review Board approved the per-mission form for the conversations.

The authors separately analysed the transcripts of the inter-views, and coded them for common themes pertaining to eachprecept. Then the authors jointly examined and summarised theresults. For each precept, themes that were comparable weremerged to avoid redundancy, and those themes that expressed adifferent perspective were included separately. Differencesamong the authors regarding the themes were resolved by con-sensus building after rereading the transcripts. The combinedthemes are identified as specific indicators in table 1. The results

of these conversations are summarised below with an explan-ation of the traditional meaning of five ethical precepts followedby a description of each of those precepts applied in theRwandan context. We include pertinent quotes from Rwandanprofessionals to further illustrate the applied precepts.

Defining and applying traditional ethical preceptsThe conversations with Rwandan healthcare professionalsrevealed that their understanding of standard bioethical preceptsis substantively similar to the traditional interpretation withimportant contextual differences.

BenefitBenefit entails the obligation to do or promote good, to removeharm and to prevent harms in order of priority with otherthings being equal.25 An ethical imperative in volunteer medicalwork is ensuring that the individual, family and communitytruly benefit from the intervention. That is to say, the interven-tion must be feasible with a reasonable potential for benefit thatoutweighs the risks. The precept of benefit also requires that asmany people as possible receive care, with a focus on achievingthe best possible outcomes. Benefits can include short-term orlong-term goods that are medical, financial, educational or con-tributive to individual and community well-being. Benefits alsoinclude international expressions of mutual caring or solidaritythat stem from global outreach.26 While benefits that accrue toAmerican stakeholders, including volunteer professionals, areeasier to identify—cultural competency in medical work,increased medical knowledge, professional and personal satisfac-tion—and can be included in the benefit–risk calculation if theyalign with the purpose of improved health and caring,14 benefitas defined by the local participants should take precedence inassessing the process.27

Table 1 Summary of applied ethical precepts for the Rwandancontext

Precept Applied indicators

Benefit ▸ Save more lives▸ Share benefit: contribute financially to family and community▸ Advance local medical professionals’ expertise▸ Develop international professional network▸ Enhance nation’s reputation for medical expertise and

leadership in East African region▸ Cause patients and families to smile

Harm ▸ Poor outcomes, including death▸ Demand for surgery exceeds available resources▸ Inadequate access to postoperative services▸ Divert limited operating-room time to RHD surgery▸ Limited opportunities for postoperative jobs, education▸ Prescribed medications incompatible with traditional diet

Justice ▸ Selection criteria exclude certain groups▸ Consider patient productivity in selection process▸ Assist with copay▸ Inability to address background injustices

Transparency ▸ Openly disclose selection criteria▸ Include multiple stakeholders in designating criteria for RHD

surgeryRespect ▸ Refer patients who are not chosen

▸ Follow-up and console patients not selected▸ Honour family and community roles in patient-directed choice

of treatment▸ Respect choices of women to prioritise childbearing over

longevity

RHD, rheumatic heart disease.

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Benefit appliedRwandan professionals regard saving the life of a patient whowould, otherwise, die as the primary benefit of the team’s RHDsurgery. Another benefit of this programme is that the screeningprocess identifies patients who can be treated medically, beforethe need for surgery arises. A greater number of patients receivethis benefit than receive surgery by ‘delivering evidence-basedcare to our patients. We are making them smile’. In otherwords, Rwandan culture places high value on alleviating pain,delivering sound medical care and bringing happiness to patientsby relieving their symptoms.

Rwandans regard the medical benefit of the programme toaccrue to individuals as well as a communal benefit; in Rwanda,a successful individual provides material and non-material bene-fits to his/her family and community. The benefit may be intan-gible—such as the inspiration that a patient who resided in anorphanage provided to other children when he returned to hisresidence following a successful operation. In this case, adminis-trators at the home reported that other students increased theirusage of healthcare and other public services once they saw thatpatient’s life and health improve. Alternatively, the benefit maybe more concrete, such as the patient who recovered, completedcollege and enrolled in medical school, with the aspiration tocomplete a cardiology residency and return to Rwanda and treatother patients who have heart diseases. Often, patients haveleveraged the exposure to the Team Heart to find educationalsponsors, and begin training in textile work, cooking or law.This type of training benefits the family to which that patientbelongs, and the cultural commitment apparently causes thesepatients to translate their individual health benefits intocommunity-wide contributions.

The norm is that a successful individual is responsible for thosewho are less fortunate: ‘if you have a chance to go to school, and achance to have money, your money is going to be shared’.

The Rwandan calculation of benefits also encompassesnational medical advances, including education, internationalcontacts, professional growth and participation in medical con-ferences. ‘The screening program will help us help more peoplethroughout the country’. Professional benefits are produced dir-ectly from building a network of professionals through the pro-gramme who are learning what should be ‘done in real time,not in books’ and building ‘friendship with the team’. Rwandanphysicians cite improvements to their healthcare delivery as abenefit of sustained collaboration with the team. ‘We are redu-cing the number of pain, not only pain, [but the] number ofcost to transport this farthest abroad. So, it is matter of fact,material benefits’. Moreover, national benefits include building areputation for medical and ethical expertise and providing lead-ership regionally. The Rwandan values of communal benefit,professional development and reputation building drive thenotion of benefit. However, the authors did not find thesevalues reflected in the literature.

HarmDespite conscientious preparation and the best intentions, harmcan result from RHD surgery and follow-up. Harm entailscausing injury, committing wrongdoing or eliciting an adverseeffect on the interests of the patient or community served.28

The strain on local resources when postoperative complicationsoccur after the team departs constitutes harm for professionals,patients and the host community alike. Harm can include pooroutcomes from lack of continuity of care, expired supplies and/or failed medical equipment. All professionals have an

obligation to refrain from inflicting harm and to minimise fore-seeable harm.

Harm appliedThe authors found that harm is a difficult concept to discusswith Rwandans due, in part, to the nation’s postgenocidalculture, which prioritises unity, reconciliation and solidarity, anddiscourages overt judgement and criticism.29 30 When askedabout harms from RHD surgery, the Rwandans who partici-pated in these conversations seemed to prefer to alleviate embar-rassment, offence or shame for others rather than speaknegatively. Admittedly, the description of harm should be readthrough the lens of a Rwandan commitment to emphasising thepositive. According to one health professional, for Rwandans,‘harm is a very strong word’. Another Rwandan professionalproposed we ‘probably should rephrase our question aboutpotential harms saying, “What are the advantages and disadvan-tages.” There are of course some disadvantages, a few, but whenyou compare in the … long line, I don’t see any harm’.

Nonetheless, Rwandans did identify several harms during thediscussions. First, the obvious medical harms are complicationsfollowing RHD surgery, including death or other impairmentsthat have occurred. Harm also occurs when a patient with RHDis not selected for surgery, as this is likely a life-or-death deci-sion. The Rwandans explained, however, that there is a culturalacceptance of death in Rwanda as part of life that differs fromthe developed world.

‘It is perhaps easier in Rwanda to accept the difficult messagethat there is no hope. The ‘no-hope’ message is difficult todeliver, but the people in this culture have been through somuch, the genocide, that they more readily accept when there isnothing that can be done. We don’t have to place blame’.

A Rwandan’s sense of personal loss when turned down foreven a life-saving surgery is a loss seen in the context of otherlife-and-death challenges.

A second harm, especially in some rural areas, is that theteam’s medical treatment may ‘outpace’ the individual patient’sopportunity for meaningful work and education post surgery.Some patients may return to a life characterised by improvedhealth, but no improvement in overall economic, career or edu-cational circumstances. Third, when patients are returned todeficient healthcare infrastructure, they may ultimately beharmed by the surgery they received. The team relies on afollow-up process that entails referral to a local physician whomay or may not have adequate training to manage patients post-operatively over the long term. For some patients who lackproximity to a physician and/or uneven distribution of medicalservices and infrastructure available for postoperative care,RHD surgery could result in poor outcomes or death if patientscannot travel from their home for critical follow-up because it istoo burdensome or expensive. Thus, the team may unintention-ally visit harm by exacerbating divisions that exist betweenurban and rural locations, though in reality, these disparities arelargely beyond the reach of the team. Fourth, follow-up medica-tions, particularly the anticoagulants, are incompatible with thetraditional Rwandan diet. When surgical patients and their care-givers are told to avoid green vegetables, it can be both finan-cially and socially difficult, resulting in non-compliance. Fifth,when the team performs RHD surgeries, their work diverts theoperating room resources from other elective surgeries, whichthen must be postponed.

Finally, Rwandan professionals mentioned repeatedly that theRHD programme is not large enough, and the surgeons do not

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stay long enough to perform a sufficient number of surgeries tomeet the national need. Thus, ‘turning some patients away’represents harm to some patients. As expressed by Rwandans,the need for RHD surgery far outstrips the number of casesaddressed by the team, and the long-term solution must lie indeveloping Rwandan capacity.

Justice as fairnessThe principle of justice holds that persons should be treatedfairly without consideration of social worth, that is, withoutconsideration of age, gender, health, ethnicity or socioeconomicstatus.31 Justice is commonly understood as the allocation ofequal resources for equal needs and unequal resources forunequal needs. Thus, justice requires providers to treat like casesalike, and treat different cases differently (difference prin-ciple).32 For a precept of justice to have meaning, it must bearticulated in a way that is applicable to a fair allocation ofRHD surgery when opportunities for treatment are limited.33

The notion of distributive justice is commonly understood tomean achieving a fair distribution of burdens and benefits.Distributive justice argues that medical missions and researchshould, whenever possible, provide treatment and benefits equalto those received by their counterparts in the developed world,and distribute treatment fairly. Within Rwanda, where there aregreat disparities in resources and access between urban and ruralsettings, there are serious challenges to equitable distributiongenerally. This raises the question of the role of medical volun-teerism programmes in Rwanda with regard to their ability tomeet standards for equitable distribution of benefits, burdensand access to RHD care when background injustices exist.34

Justice appliedThere are potential harms related to the team’s RHD surgeryprogramme in Rwanda. At the very least, in this context, justicerequires providing equitable criteria for RHD surgery and effect-ive follow-up to all patients equally. Rwandan professionalsassessed the team’s criteria for RHD surgery as ‘fair’. Yet, theyacknowledged that the programme is ‘unfair’ in that not every-one in Rwanda who has need of surgery has access to surgicaltreatment or postoperative care. For example, some rural patientsreferred do not have the same access because they live fartherfrom health centres, and have few transportation resources.

To identify the criteria that are medically appropriate and eth-ically just is a humbling challenge and a continuous concern forthe team. Conversations with Rwandan health professionalsrevealed that the criteria for RHD surgical selection in Rwandaare analogous to the patient-selection process involving materialscarcity that is standard in the USA. The team cardiologist priori-tises those patients who can be helped by surgery and have thegreatest chance of survival, while also considering the peda-gogical value of each case to meet short-term and long-term pro-gramme goals. Additional psychosocial assessments in Rwandaare only slightly different from those asked in the USA. Forexample, the Rwandan and American physicians seek to deter-mine who has the education level to comprehend, support struc-ture and resources needed to participate in medical follow-up.

The team’s American cardiologist admits that in allocating thescarce, precious surgical resources, she asks herself,

‘Who has the education level to comprehend the magnitude ofthe surgery and the importance of post-operative follow-up?Who will have the family or other resources to support therequisite commitment to follow-up that may involve a nine-hourbus ride to the district health clinic in order to regularly manage

their Coumadin? Who has access to a physician who can followthe patient after surgery? Who has the funds to pay for their owncare such as Coumadin testing later?’

Sadly, answers to these threshold questions may eliminatesome patients from further consideration, particularly ruralpatients, while safety-net supports would not likely requireWestern programmes to eliminate similarly situated patients fromconsideration. Another issue that would warrant fuller explor-ation is the extent to which patients with physician advocatesclose to the capital city of Kigali may be advantaged during thepatient-selection process. A patient whose cardiologist is presentfor the selection meeting may be well represented. ‘This patientis going to school, has a goal, or has children they have to raise.So those are the kind of things I think they put into their consid-erations, making the decisions’. If the patient has a particularlyskilled advocate, this could be to his/her advantage. Moreover,selection criteria may result in some who are over-representedamong the poor and disadvantaged Rwandan populations, suchas the Twa people, being disproportionately likely to be elimi-nated from selection, raising justice concerns.

Background injusticesThe Team Heart programme comes to Rwanda to operatewithin a society with unique structural inequities. We call thesebackground injustices that were raised with regard to RHDsurgery. Inequities in social and socioeconomic status resultingin structural stratification are among the fundamental determi-nants of access to care for RHD. Widespread poverty, especiallyin rural areas, limits the extent to which a just distribution ofhealth services can be achieved. Rwandan professionals also per-ceived an inequity associated with the lack of international focuson RHD in Africa.35 The Rwandans cited the wealth of Westernresources dedicated to some diseases and conditions as com-pared with a disproportionate lack of resources for treatingheart disease in Africa. In their view, Western funding for HIV/AIDS treatment is more available than funding to treat Africanpatients who have heart diseases. This inequity was due, in part,to the fact that this disease has an analogous constituency ofpatients in the West, while RHD has almost no Western pres-ence. ‘HIV/AIDS is popular in the west because they share theillness. There is no RHD in the west, so there is no interest inthis disease and the need in Africa’. In Rwanda, funding forHIV/AIDS represented 24% of the healthcare budget in 2006,compared with <1% of health spending from internationalagencies on non-communicable diseases.36

Another consideration of injustice stems from the RwandanGovernment’s requirement that a patient must have bothnational health insurance and the ability to pay a 10% copay-ment in order to be eligible for surgery by the team. The gov-ernment has made a collective moral judgement that individualcontribution is important. However, there are exceptions to thecopay policy, in some cases, if a patient obtains confirmationfrom his/her home district regarding his/her inability to pay.One Rwandan estimated the cost to cover the copay for surgeryon all 16 patients the team treats during each trip: ‘it’s worthone ticket for one person to come here from the states’. Justiceshould entail culturally appropriate assistance with the copay forthose patients who would, otherwise, be eligible for surgery, butfor their indigence.

TransparencyMost individuals are interested in knowing the reasons behinddecisions that significantly affect their lives.31 To achieve

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transparency in the Rwandan setting, the rationale for treatmentdecisions related to RHD must be publicly accessible,37 andmust be discussed broadly with relevant family or communitymembers. The transparency principle requires that a decision-making process be clearly described, as accountable as possible,and free of political or other social interference.38

Transparency appliedRwandan professionals stated that the criteria on which patientsare chosen for RHD surgery should be clearly stated and con-sistent. They would like multiple stakeholders included in thedesignation of those criteria, which should be shared openlywith patients and families. The Rwandan professionals reportedthat administrative decision-making for this international under-taking must receive input from ‘every angle’. This includesreceiving input from Rwandan physicians and nurses to theMinistry of Health officials and, at times, members of themedical school and public health faculties. Thus, transparencyand inclusiveness among all levels of the medical decision-makers are highly valued.

The conversations reflected different viewpoints regardinghow well the programme is achieving full transparency wheresome topics are concerned. For example, as described earlier,in Rwanda, the RHD programme focuses on some values forpatient selection, such as patient productivity, that are differ-ent from those in the USA, and others that are very similar.However, those with whom we conversed did not evinceagreement on the extent to which this consideration factoredinto patient selection. One professional’s stated goal is thateveryone has an equal chance to receive RHD surgery basedon medical triage criteria, regardless of socioeconomic status.‘We discourage actually the [western] surgeons and the teamto come back [to Rwanda] if they know there is a selectionaccording to the financial or the economical (sic) status’.Nevertheless, accounts from other Rwandan professionalswere inconsistent with that statement. Also, no one suggestedthese economic concerns were shared with patients. Although,the issue of patient productivity came up repeatedly in con-versations with Rwandan professionals, the topic appeared tobe publicly discouraged and unacknowledged in contrast tothe value placed on openness. Indeed, it is possible that apatient with an opportunity for job training may fair betterthan one who does not, and the impact of these differences isnot often transparent.

Respect for personsAt the core of respect for persons is the obligation to treat eachindividual as an end in himself or herself, and not merely as ameans to an end. Treating each person as his or her own endtakes into account a person’s unique social and medical circum-stances and needs. This precept can be especially challenging incultures that are patriarchal or favour the community over theindividual.

Respect for persons in developed countries functionsthough the process of informed consent for medical treat-ment. Clear standards for informed consent are in place indeveloped countries, and even so, the process is fraught withproblems. Informed consent entails disclosure of potentialrisks and benefits and alternatives to the proposed treatment,comprehension of the disclosure, lack of coercion and permis-sion of the patient to conduct the intervention. If this processis frequently unsatisfactory in one’s own culture and language,the difficulties are compounded in international medicalwork.

Respect for persons appliedConcerns regarding respect for persons are multifaceted. In aprogramme dedicated to didactic training, the team is sometimeschallenged not to attempt cases that are ‘of interest’ from atraining perspective, but present a futile clinical burden for theRwandan healthcare and family communities after the team’sdeparture. Respect for persons required the team to decline acomplex case that might have been intellectually and surgicallyinteresting, but unlikely to improve the health or life chancesfor the patient in the Rwandan setting. A second related facet ofrespect in RHD surgery addresses the way in which those whodo not qualify for surgery are treated. The standard practice isto refer those who can postpone surgery to the next surgicalteam that comes to Rwanda. The very sick whose disease is tooadvanced for surgical intervention are referred to a local phys-ician. Professionals should share with patients the medicalassessment and reasons why they were not chosen. ‘So, we’veexplained and they understand; they accept why they are leftout. Of course, nobody likes to be left out when they’re dying’.Professionals do attempt to console patients and their families.

A third respect for persons issue arises when patients are con-sulted to choose the type of valve to be used for each RHDsurgery. This is a recurring concern for female patients becausethe social stigma related to childbearing and a woman’s valueand cultural considerations can cause undue influence on somewomen’s medical decisions. Therefore, some young women ofchildbearing age do not have the same surgery options as men.Over time, the team has found that young Rwandan womentend to choose less sustainable tissue valves in order to preservetheir childbearing options, while most men in similar medicalcircumstances are at liberty to choose longer-lasting mechanicalvalves. The social stigma implications of a woman’s choice ofvalve loom large. ‘In the rural communities, if a woman isunable to bear children, a man will not marry her. If a womanhas neither a husband nor children, then her reputation is verybad and she will have no life’. On the one hand, mechanicalvalves offer greater longevity, but require a lifelong Coumadinregimen that severely complicates pregnancy. On the otherhand, postoperative childbirth following the choice of a tissuevalve is less restricted, although they last for considerably feweryears. For this reason, tissue valves have been the overwhelmingchoice of women of childbearing age. The team respects theautonomy of women (and men) to make these surgical choices,notwithstanding the longevity implications or conflicting valuesproviders may have.

Overall, the team has adapted to the Rwandan value placedon communal medical decision-making. The team often experi-enced extensive family discussions before a patient agrees tosurgery, and sometimes will delay surgery or other treatmentuntil family members or trusted advisors can travel to Kigali toparticipate in discussions.

DISCUSSIONThe voices of Rwandan healthcare providers in the descriptionof the applied precepts enable a more comprehensive under-standing and analysis of the impact of volunteer missions thatperform RHD surgery. Several themes emerged. The communalimportance of improving the health of even a small number ofindividuals may have been underestimated in previous literature.Also, the Rwandan value placed on building long-term profes-sional relationships and a regional reputation for medical servicemay also have been overlooked. The conversations stressed thevalue of incorporating Rwandan stakeholders when making

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difficult ethical choices to contribute understanding and contextto the traditional understanding of ethical precepts. The long-term commitment to developing in-country medical capacityappears to be highly valued by Rwandans. Nevertheless, harmcaused by leaving patients to inadequate follow-up or trainingremains an important concern. Overall, Rwandan contributionsto the applied precepts of benefit and harm focus attentionmore on structural issues such as shared benefit, national reputa-tion and expertise than the traditional Western notions of theseprecepts. Individual agency remains important, but not centralto Rwandan concepts of justice, transparency and respect, par-ticularly regarding women.

The authors acknowledge that the proposed application and,in some cases, expansion of familiar ethical precepts appropriatefor RHD surgery in Rwanda will not solve all challenges ormitigate potential harms that result from medical volunteerismin Rwanda or in other developing nations. Rather, this paperwill extend the discussion regarding the ethics of medical volun-teerism through the inclusion of local voices in the ethical dis-course to make a constructive contribution to a dauntingundertaking. Despite the small number of local voices and theinclusion of mainly healthcare professionals in discussionsreported here that are limitation of this article, these conversa-tions offer additional insight into ethical precepts may beapplied in practice to medical missions in other emergingnations following a similar process of inclusion, collaborationand long-term engagement.

Acknowledgements The authors acknowledge and thank the following personsfor their careful reading and comments on this article: Jacqueline Glover, PhD;Calvin Wilson, MD; Jennifer Bellows, MD; and Mariele Courtois.

Contributors MEC drafted the script for the discussions, wrote the first draft of themanuscript, participated in editing interim drafts and wrote the final draft. TLMedited the script for the discussions, conducted scripted discussions in Rwanda, readinterim versions of the manuscript and provided comments on the final version.DBM edited the script for the discussions, conducted scripted discussion in Rwanda,revised numerous interim versions of the manuscript and provided comments on thefinal version.

Funding This paper was funded, in part, by the University of Colorado School ofLaw Faculty Development Fund and Faculty Assistance Fund.

Competing interests None declared.

Provenance and peer review Not commissioned; externally peer reviewed.

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