Benefit

Benefit entails the obligation to do or promote good, to remove harm and to prevent harms in order of priority with other things being equal.25 An ethical imperative in volunteer medical work is ensuring that the individual, family and community truly benefit from the intervention. That is to say, the intervention must be feasible with a reasonable potential for benefit that outweighs the risks. The precept of benefit also requires that as many people as possible receive care, with a focus on achieving the best possible outcomes. Benefits can include short-term or long-term goods that are medical, financial, educational or contributive to individual and community well-being. Benefits also include international expressions of mutual caring or solidarity that stem from global outreach.26 While benefits that accrue to American stakeholders, including volunteer professionals, are easier to identify—cultural competency in medical work, increased medical knowledge, professional and personal satisfaction—and can be included in the benefit–risk calculation if they align with the purpose of improved health and caring,14 benefit as defined by the local participants should take precedence in assessing the process.27

Benefit applied

Rwandan professionals regard saving the life of a patient who would, otherwise, die as the primary benefit of the team's RHD surgery. Another benefit of this programme is that the screening process identifies patients who can be treated medically, before the need for surgery arises. A greater number of patients receive this benefit than receive surgery by ‘delivering evidence-based care to our patients. We are making them smile’. In other words, Rwandan culture places high value on alleviating pain, delivering sound medical care and bringing happiness to patients by relieving their symptoms.

Rwandans regard the medical benefit of the programme to accrue to individuals as well as a communal benefit; in Rwanda, a successful individual provides material and non-material benefits to his/her family and community. The benefit may be intangible—such as the inspiration that a patient who resided in an orphanage provided to other children when he returned to his residence following a successful operation. In this case, administrators at the home reported that other students increased their usage of healthcare and other public services once they saw that patient’s life and health improve. Alternatively, the benefit may be more concrete, such as the patient who recovered, completed college and enrolled in medical school, with the aspiration to complete a cardiology residency and return to Rwanda and treat other patients who have heart diseases. Often, patients have leveraged the exposure to the Team Heart to find educational sponsors, and begin training in textile work, cooking or law. This type of training benefits the family to which that patient belongs, and the cultural commitment apparently causes these patients to translate their individual health benefits into community-wide contributions.

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

The Rwandan calculation of benefits also encompasses national medical advances, including education, international contacts, professional growth and participation in medical conferences. ‘The screening program will help us help more people throughout the country’. Professional benefits are produced directly from building a network of professionals through the programme who are learning what should be ‘done in real time, not in books’ and building ‘friendship with the team’. Rwandan physicians cite improvements to their healthcare delivery as a benefit of sustained collaboration with the team. ‘We are reducing the number of pain, not only pain, [but the] number of cost to transport this farthest abroad. So, it is matter of fact, material benefits’. Moreover, national benefits include building a reputation for medical and ethical expertise and providing leadership regionally. The Rwandan values of communal benefit, professional development and reputation building drive the notion of benefit. However, the authors did not find these values reflected in the literature.

Harm

Despite conscientious preparation and the best intentions, harm can result from RHD surgery and follow-up. Harm entails causing injury, committing wrongdoing or eliciting an adverse effect on the interests of the patient or community served.28 The strain on local resources when postoperative complications occur after the team departs constitutes harm for professionals, patients and the host community alike. Harm can include poor outcomes 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 foreseeable harm.

Harm applied

The authors found that harm is a difficult concept to discuss with Rwandans due, in part, to the nation's postgenocidal culture, which prioritises unity, reconciliation and solidarity, and discourages overt judgement and criticism.29 ,30 When asked about harms from RHD surgery, the Rwandans who participated in these conversations seemed to prefer to alleviate embarrassment, offence or shame for others rather than speak negatively. Admittedly, the description of harm should be read through the lens of a Rwandan commitment to emphasising the positive. According to one health professional, for Rwandans, ‘harm is a very strong word’. Another Rwandan professional proposed we ‘probably should rephrase our question about potential harms saying, “What are the advantages and disadvantages.” There are of course some disadvantages, a few, but when you compare in the … long line, I don't see any harm’.

Nonetheless, Rwandans did identify several harms during the discussions. First, the obvious medical harms are complications following RHD surgery, including death or other impairments that have occurred. Harm also occurs when a patient with RHD is not selected for surgery, as this is likely a life-or-death decision. The Rwandans explained, however, that there is a cultural acceptance of death in Rwanda as part of life that differs from the developed world.‘It is perhaps easier in Rwanda to accept the difficult message that there is no hope. The ‘no-hope’ message is difficult to deliver, but the people in this culture have been through so much, the genocide, that they more readily accept when there is nothing that can be done. We don't have to place blame’.

A Rwandan's sense of personal loss when turned down for even a life-saving surgery is a loss seen in the context of other life-and-death challenges.

A second harm, especially in some rural areas, is that the team's medical treatment may ‘outpace’ the individual patient’s opportunity for meaningful work and education post surgery. Some patients may return to a life characterised by improved health, but no improvement in overall economic, career or educational circumstances. Third, when patients are returned to deficient healthcare infrastructure, they may ultimately be harmed by the surgery they received. The team relies on a follow-up process that entails referral to a local physician who may or may not have adequate training to manage patients postoperatively over the long term. For some patients who lack proximity to a physician and/or uneven distribution of medical services and infrastructure available for postoperative care, RHD surgery could result in poor outcomes or death if patients cannot travel from their home for critical follow-up because it is too burdensome or expensive. Thus, the team may unintentionally visit harm by exacerbating divisions that exist between urban and rural locations, though in reality, these disparities are largely beyond the reach of the team. Fourth, follow-up medications, particularly the anticoagulants, are incompatible with the traditional Rwandan diet. When surgical patients and their caregivers are told to avoid green vegetables, it can be both financially and socially difficult, resulting in non-compliance. Fifth, when the team performs RHD surgeries, their work diverts the operating room resources from other elective surgeries, which then must be postponed.

Finally, Rwandan professionals mentioned repeatedly that the RHD programme is not large enough, and the surgeons do not stay long enough to perform a sufficient number of surgeries to meet 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 cases addressed by the team, and the long-term solution must lie in developing Rwandan capacity.

Justice as fairness

The principle of justice holds that persons should be treated fairly without consideration of social worth, that is, without consideration of age, gender, health, ethnicity or socioeconomic status.31 Justice is commonly understood as the allocation of equal resources for equal needs and unequal resources for unequal needs. Thus, justice requires providers to treat like cases alike, and treat different cases differently (difference principle).32 For a precept of justice to have meaning, it must be articulated in a way that is applicable to a fair allocation of RHD surgery when opportunities for treatment are limited.33

The notion of distributive justice is commonly understood to mean achieving a fair distribution of burdens and benefits. Distributive justice argues that medical missions and research should, whenever possible, provide treatment and benefits equal to those received by their counterparts in the developed world, and distribute treatment fairly. Within Rwanda, where there are great disparities in resources and access between urban and rural settings, there are serious challenges to equitable distribution generally. This raises the question of the role of medical volunteerism programmes in Rwanda with regard to their ability to meet standards for equitable distribution of benefits, burdens and access to RHD care when background injustices exist.34

Justice applied

There are potential harms related to the team's RHD surgery programme in Rwanda. At the very least, in this context, justice requires providing equitable criteria for RHD surgery and effective follow-up to all patients equally. Rwandan professionals assessed the team's criteria for RHD surgery as ‘fair’. Yet, they acknowledged that the programme is ‘unfair’ in that not everyone in Rwanda who has need of surgery has access to surgical treatment or postoperative care. For example, some rural patients referred do not have the same access because they live farther from health centres, and have few transportation resources.

To identify the criteria that are medically appropriate and ethically just is a humbling challenge and a continuous concern for the team. Conversations with Rwandan health professionals revealed that the criteria for RHD surgical selection in Rwanda are analogous to the patient-selection process involving material scarcity that is standard in the USA. The team cardiologist prioritises those patients who can be helped by surgery and have the greatest chance of survival, while also considering the pedagogical value of each case to meet short-term and long-term programme goals. Additional psychosocial assessments in Rwanda are only slightly different from those asked in the USA. For example, the Rwandan and American physicians seek to determine who has the education level to comprehend, support structure and resources needed to participate in medical follow-up.

The team's American cardiologist admits that in allocating the scarce, precious surgical resources, she asks herself,‘Who has the education level to comprehend the magnitude of the surgery and the importance of post-operative follow-up? Who will have the family or other resources to support the requisite commitment to follow-up that may involve a nine-hour bus ride to the district health clinic in order to regularly manage their Coumadin? Who has access to a physician who can follow the patient after surgery? Who has the funds to pay for their own care such as Coumadin testing later?’

Sadly, answers to these threshold questions may eliminate some patients from further consideration, particularly rural patients, while safety-net supports would not likely require Western programmes to eliminate similarly situated patients from consideration. Another issue that would warrant fuller exploration is the extent to which patients with physician advocates close to the capital city of Kigali may be advantaged during the patient-selection process. A patient whose cardiologist is present for the selection meeting may be well represented. ‘This patient is 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 considerations, making the decisions’. If the patient has a particularly skilled advocate, this could be to his/her advantage. Moreover, selection criteria may result in some who are over-represented among the poor and disadvantaged Rwandan populations, such as the Twa people, being disproportionately likely to be eliminated from selection, raising justice concerns.

Transparency

Most individuals are interested in knowing the reasons behind decisions that significantly affect their lives.31 To achieve transparency in the Rwandan setting, the rationale for treatment decisions related to RHD must be publicly accessible,37 and must be discussed broadly with relevant family or community members. 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 applied

Rwandan professionals stated that the criteria on which patients are chosen for RHD surgery should be clearly stated and consistent. They would like multiple stakeholders included in the designation of those criteria, which should be shared openly with patients and families. The Rwandan professionals reported that administrative decision-making for this international undertaking must receive input from ‘every angle’. This includes receiving input from Rwandan physicians and nurses to the Ministry of Health officials and, at times, members of the medical school and public health faculties. Thus, transparency and inclusiveness among all levels of the medical decision-makers are highly valued.

The conversations reflected different viewpoints regarding how well the programme is achieving full transparency where some topics are concerned. For example, as described earlier, in Rwanda, the RHD programme focuses on some values for patient selection, such as patient productivity, that are different from those in the USA, and others that are very similar. However, those with whom we conversed did not evince agreement on the extent to which this consideration factored into patient selection. One professional's stated goal is that everyone has an equal chance to receive RHD surgery based on medical triage criteria, regardless of socioeconomic status. ‘We discourage actually the [western] surgeons and the team to come back [to Rwanda] if they know there is a selection according to the financial or the economical (sic) status’. Nevertheless, accounts from other Rwandan professionals were inconsistent with that statement. Also, no one suggested these economic concerns were shared with patients. Although, the issue of patient productivity came up repeatedly in conversations with Rwandan professionals, the topic appeared to be publicly discouraged and unacknowledged in contrast to the value placed on openness. Indeed, it is possible that a patient with an opportunity for job training may fair better than one who does not, and the impact of these differences is not often transparent.

Respect for persons

At the core of respect for persons is the obligation to treat each individual as an end in himself or herself, and not merely as a means to an end. Treating each person as his or her own end takes into account a person's unique social and medical circumstances and needs. This precept can be especially challenging in cultures that are patriarchal or favour the community over the individual.

Respect for persons in developed countries functions though the process of informed consent for medical treatment. Clear standards for informed consent are in place in developed countries, and even so, the process is fraught with problems. Informed consent entails disclosure of potential risks and benefits and alternatives to the proposed treatment, comprehension of the disclosure, lack of coercion and permission of the patient to conduct the intervention. If this process is frequently unsatisfactory in one's own culture and language, the difficulties are compounded in international medical work.

Respect for persons applied

Concerns regarding respect for persons are multifaceted. In a programme dedicated to didactic training, the team is sometimes challenged not to attempt cases that are ‘of interest’ from a training perspective, but present a futile clinical burden for the Rwandan healthcare and family communities after the team's departure. Respect for persons required the team to decline a complex case that might have been intellectually and surgically interesting, but unlikely to improve the health or life chances for the patient in the Rwandan setting. A second related facet of respect in RHD surgery addresses the way in which those who do not qualify for surgery are treated. The standard practice is to refer those who can postpone surgery to the next surgical team that comes to Rwanda. The very sick whose disease is too advanced for surgical intervention are referred to a local physician. Professionals should share with patients the medical assessment and reasons why they were not chosen. ‘So, we've explained and they understand; they accept why they are left out. 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 consulted to choose the type of valve to be used for each RHD surgery. This is a recurring concern for female patients because the social stigma related to childbearing and a woman's value and cultural considerations can cause undue influence on some women's medical decisions. Therefore, some young women of childbearing age do not have the same surgery options as men. Over time, the team has found that young Rwandan women tend to choose less sustainable tissue valves in order to preserve their childbearing options, while most men in similar medical circumstances are at liberty to choose longer-lasting mechanical valves. The social stigma implications of a woman's choice of valve loom large. ‘In the rural communities, if a woman is unable to bear children, a man will not marry her. If a woman has neither a husband nor children, then her reputation is very bad and she will have no life’. On the one hand, mechanical valves offer greater longevity, but require a lifelong Coumadin regimen that severely complicates pregnancy. On the other hand, postoperative childbirth following the choice of a tissue valve is less restricted, although they last for considerably fewer years. For this reason, tissue valves have been the overwhelming choice of women of childbearing age. The team respects the autonomy of women (and men) to make these surgical choices, notwithstanding the longevity implications or conflicting values providers may have.

Overall, the team has adapted to the Rwandan value placed on communal medical decision-making. The team often experienced extensive family discussions before a patient agrees to surgery, and sometimes will delay surgery or other treatment until family members or trusted advisors can travel to Kigali to participate in discussions.