Ethics of community health workers: shift from 'doing good' to 'being good'

Last week we conducted a training for community health workers on ethics and professionalism. We were discussing the principle of autonomy and the right of every individual to decide what treatments they will take and refuse. We used a case vignette which describes a community health worker inserting an intrauterine device to prevent pregnancy in a young woman belonging to a marginalised tribal community without informing her, immediately after delivery even before she could recover from the dizziness and fatigue of the labour pains. It was no surprise to us that most of the participants argued that what she did was right. They had the following arguments:

1. The young girl is from a poor, marginalised tribal community. She is uneducated. She will not understand what is birth spacing, contraception or intrauterine devices. It is difficult to explain to her. 

2. Even if we explain, it will only make her afraid and she will refuse. 

3. If she refuses now, we will not be able to see her again for several months because she lives in a geographically inaccessible area. 

4. They belong to a migrating nomadic community, and therefore tracing and tracking them is very difficult. 

5. If we do not utilise this opportunity, she will get pregnant again very soon and it will end up detrimental to her health. 

6. People belonging to her community usually have many children, sometimes even 7-8 children, in quick succession. They don't believe in family planning. 

7. The men belonging to her community are alcoholics and uncivilised. They don't understand about family planning. 

We could see that these arguments emerged from their bitter experiences of the past. They said, "We have seen many cases like this. Those people are very difficult to work with. We only know our every day struggle trying to make them healthy." Their work with the health system places on them certain expectations. Though the health system does not pressurise them to forcefully insert the intrauterine device in the women, they would be held accountable for all higher order pregnancies and they would be questioned by their higher officials regarding why they were unsuccessful in providing contraceptive services to these clients. They further argued the following: 

8. We face pressure from two sides and working with this community is a constant pain for us. 

9. On one side the community members do not cooperate with us. They view us with suspicion even if we go to provide other welfare services. They just want us to leave them alone. 

10. On the other side our public health officials question us about why contraceptive services are not provided to this community. 

One of the strategies that these community health workers adopt to overcome this existential crisis is to stereotype the people from this community as seen in statements 6 and 7, and resort to strategies that help them overcome the crisis described in statements 8-10, one of which is to insert the intrauterine device in such women even without informing them. 

Though this sounds like a justification of an unethical act, there is very little that the community health worker can do. She suffers from a lack of agency and is pressured by the power hierarchy within the system. She displaces this lack of agency by taking control over the bodily agency of the vulnerable tribal women. This definitely does not justify the placement of the intrauterine device without the woman's permission, but it helps us understand the root cause of the unethical act. 

When we discussed this in the group, we could sense a looming emotion of relief in the room. The community health workers who were arguing vehemently supporting their stand of inserting the intrauterine device without the woman's knowledge, suddenly fell silent and we could sense that they went into introspection. After a period of quiet introspection one of the participants asked, "Are you saying we are not solely responsible for being ethical?" 

That was an intense question. It challenged the entire premise of the workshop. It made me wonder if we are training community health workers on ethics and professionalism, when they had very little agency and control over the decision they make in their work. Are we introducing a cause for distress in their mind between what they ought to do and what they are made to do? Are we imposing ideas in their mind about right and wrong, that they may never be able to practice? Working as a community health worker by itself is a very tough job. Are we complicating it further by introducing judgments on what is right and wrong? 

The core question that has been bothering me since then is "Do people with limited agency and freedom in decision making have the luxury of being ethical?" There were so many instances where this conflict came up during the workshop. 

1. We were discussing confidentiality of community members. One of the examples we were discussing was taking photos of community members receiving aid in the form of food, clothes, and essential supplies and posting them on websites and social media pages to appease the donors. We discussed how this breaches the confidentiality of the community member and strips them of their dignity by making them a matter of public display. But one of the community health worker asked us, "If we cannot take photos of giving the relief materials, how can we prove to the donors that we are doing good work? If we don't share the photos, it will hamper any further donations and therefore benefits will not reach the community." In today's era of photo, self advertisement and public display in social media, is it even right to think of confidentiality of community members? Shouldn't it be the donors and the leaders of the humanitarian and relief agencies who take the decision not to demand public display of their client's photos? 

2. In one case vignettes a community health worker had spent her own pocket money to transport a woman in labour to a tertiary care hospital for delivery which was 35 KM away from the village. She had to do this as the government ambulance services were not responding to the call. We were discussing the limits of the duty of a community health worker. Was spending money out of her pocket and sending her to the hospital her duty? We all agreed that she must not be expected to spend her money for this. It was the duty of the health system. But wouldn't she be answerable if something were to happen to the mother or the baby? Wouldn't she be the first person on the line of fire during an enquiry? 

3. We were discussing how the community health worker must ensure privacy of her clients while doing an examination of a woman during pregnancy. But most community health workers do not have a health subcenter of her own where she can carry out her everyday activities in the village. She often has to share the integrated child development services (ICDS) centre which houses children and their parents. When there is no private space for her to examine a woman, how do we expect her to practice privacy? 

4. We were discussing a vignette in which a young woman who is newly married is pregnant. But she wants to pursue higher education and so is requesting a medical termination of pregnancy. But the community health worker hesitates to offer it, as it is the first pregnancy and the community will blame her and chastise her for supporting such an abortion. This community health worker has to respect the social norms and values if she has to be effective in the community. She cannot go against the majority opinion of the community and still expect to function as their representative. They will dismiss her and ignore her if they do not identify her as part of their community. To protect her respect in the community, she may have to abide by social norms there. How do we expect the community health worker to challenge patriarchy, caste discrimination, class discrimination in the society without becoming redundant? 

I think expecting community health workers to always 'do the right thing' is a very steep demand. She is under immense pressure from the health system and the community to do things a certain way. Does that mean they should not be taught how to be ethical? I don't think so. Rather than approaching ethics as 'doing the right thing', I think it should be approached as 'being the right way'. I think there should be a shift from ethics in decision making and acting, to ethics in being the right community health worker. If we take the example of the tribal woman who has just delivered a baby and the community health worker is in a dilemma whether to place the intrauterine device after informing her or without informing her, I think rather than concealing the fact and inserting the device without her knowledge, she should spend time, talk to her, make her understand, earn her trust, work with her over time and then help her adopt a family planning method. If despite all these efforts the woman refuses to adopt birth control, the community health worker must document everything and respond with evidence when she is questioned. Here, the focus has shifted from implementing a birth control strategy, to her efforts to help the woman adopt one. The ethics training may help the community health worker shift the focus from the right act, to the right way of being a 'good community health worker'. We will soon be disseminating the curriculum and intend to advocate with the state nursing council to incorporate this in the curriculum of training of community health workers.