Rights, Suspicions, and Protecting the Participants
Yesterday, just before heading into what turned out to be an eight hour maternal death audit meeting, the hospital's Medical Officer In Charge told me that we needed to talk. I thought he wanted to talk about a letter we've been drafting together but as he finished the second half of his sentence I was taken aback. He told me some people, nurses and administrators, at the hospital had mentioned to him that I have been doing "more than I'm supposed to be doing" on the maternity ward. He didn't tell me more and said we'd talk when I got back from Dar es Salaam, nearly two weeks from now. I told him I really wish he would just let me know what the problem was. We agreed to talk later that day. Throughout the whole eight hours of the meeting, I was anxiously going over and over everything that I've done and what might be the problem. He told me it wasn't that serious and I shouldn't worry but I couldn't help myself and worried endlessly anyways. This is my work, my career, and I take it very seriously. Not only that, but if the staff members of the hospital have a problem with me, then I will be absolutely unable to get the information I set out to collect. I rely heavily on their good will and openness. So, I sat in my chair as we read the names and clinical details of the dead mothers and in between cases I tried not to let my stomach be too tied up in knots.
That night, we went to talk and have a couple drinks. He told me people had come to him concerned that I was taking pictures of patients and that I was telling women what their rights were and that nurses had not been doing things they should have be doing or had been doing things wrong. Well, the first thing is crazy because I actually feel incredibly uncomfortable taking pictures of people, especially those in the hospital, and I only take pictures that don't show women's faces, in order to protect their privacy. Any pictures I've taken on the ward are like this one, to show the ward environment:
The second, while I've thought about doing it (see my earlier Ethical Dilemmas post), I've not actually outright told any women that there have been mistakes or that things have been done improperly or anything else. Personally, when he told me that people were worried I was telling women their rights, the first thing that came to my mind were two questions: Why would they be afraid I was telling women what their rights in the hospital are? and Why would it be a problem if I was doing that? I don't see it as my place in the hospital to go rogue and incite a revolution or anything. I find it very hard to balance protecting women as participants in my study and protecting the hospital staff, who are also participants in my study. It's something that I often think about and I have been trying very hard to collect data that will tell a balanced and fair account of the state of maternal health care here. I don't want to demonize or villainize anyone because, in order to improve care and outcomes, we're all going to have to work together and not blame the other parties.
While I was really concerned about what I'd been doing wrong, the incident and the suspicions actually prove to be an excellent piece of data. I'm wondering if they were concerned that I was telling women their rights because they are worried women will start to realize that the care is not always of the highest quality and they're not always being treated as they should be while in the hospital. This leads to bigger questions about patient rights, a responsibility to provide high quality care that respects the dignity of women, and openness to feedback and constructive criticism within the hospital. The doctor and I agreed that we should think about a way to do a patient rights project to raise awareness within the communities about what patients' rights are when they step onto the hospital grounds. But I certainly don't think it's my place to rail against the hospital while I'm there only at their mercy and by their invitation. I do, however, talk to the students who come to the ward for their practicals about how we should treat women and how we should make sure we follow all the standard procedures and ensure they receive the best quality care, not just a hurried, impersonal once over. Perhaps someone from outside the ward passed by and happened to hear me extemporizing on patient care surrounded by ten or fifteen students? While there were certainly women within earshot, I have never done such a thing solely for their benefit.
The doctor also said he thinks people were concerned that maybe I'm planning something that will make them look bad or take them by surprise. I asked why and he told me that there are a lot of concerns since the documentary Darwin's Nightmare (I think that's what it's called, right?) came out. I've heard of it but never seen it and it apparently portrays people and businesses in Tanzania in a bad light and it brought some problems for them as a result. So, the people at the hospital wanted to know who was supervising me and whether or not I'd gotten all the appropriate permits and the like to conduct my research. Of course, I have and he knows that but we will now start an HR file for me so anyone who wants can go look for themselves. I'm also going to do a short presentation at the hospital's morning meeting in August to talk about some preliminary results and answer any questions. That way, we hope, the staff will see that they too are my participants and I am committed to protecting them and acting as a voice for them. This has also been an interesting experience because the people in question, I didn't ask who they were, but apparently they are from outside of maternity, did not choose to ask me personally what I am doing and whether or not I have the permits. Instead, they went to the highest levels of the hospital administration to get answers. I asked the doctor why people felt they couldn't ask me if they'd had any questions about what I am doing and he told me that here, it's very difficult for people to confront others directly if they think the person has possibly done something wrong. I have noticed this in other instances, too and I think it's detrimental to the process of improving care. Perhaps staff members are afraid of retribution or afraid of being seen as a tattletale or something else. However, unless specific people are told specifically what they are doing wrong and what they can do to improve, it's very hard to act on suggestions. The Nurse In Charge of maternity told me that they only ever receive vague, general comments when something goes wrong. No one ever gives names or specifics and so it's almost impossible to fix the problems. This promotes the status quo and inhibits efforts to move forward. I'm now going to be asking my respondents more about this issue, how they would like to receive feedback, and why there isn't more openness.
All and all, the suspicions made me feel like I'm doing something right. I was almost happy to learn that I've been making waves because we need to be talking about patient rights and we shouldn't be afraid for them to have more knowledge. If anything, more informed patients can help providers by reminding them if they forget to check them or bring medications and they can help hold them accountable for the language they use and the way they treat women. Now, the trick is to make sure the waves don't get any bigger lest they capsize the boat and ruin my plans.