The Value of Apology: Communication, Restitution, and Relationship
A Conversation with Chris King
Professor of International Health, Medicine and Pathology, Case Western Reserve University
David: Thank you, Chris, for taking the time to speak with me today about the role of compassion in your life and your work as a physician-scientist studying tropical infectious diseases. How did you find your way to tropical medicine?
Chris: It’s interesting how one gets into things. The story of how I first got interested in tropical medicine is not really one that I’m proud of. During my junior year at Kalamazoo College, in the 1970’s, I had an opportunity to participate in the study abroad program. I had a girlfriend from high school who wanted to get married. Well, I wasn’t ready so I picked the site that was farthest away, which happened to be in Sierra Leone. In those days, communication wasn’t so good, and I thought that spending a year in Sierra Leone would help cool things down. So off I went.
I remember spending time in the western part of the country, where they had problems with leprosy. I worked at the leprosarium there and helped out with some of the surgeries. I also came down with malaria and actually diagnosed my own case of malaria in the laboratory. Malaria would spread through our dormitory and everybody would get sick except for the people who were born and raised in the country, who were immune. I saw these things first-hand.
I also remember seeing hunger. After we ate our food, there would be a long line of people outside waiting for the food on our plates that we didn’t finish. I saw such disparities in income, privilege, and opportunity. That really got to me, emotionally, and it clearly had a big impression on me. So I said to myself, “I need to come back to do something about this. It’s important to me.”
David: Something to alleviate or change the situation?
Chris: Yes, to alleviate the inequalities that I saw. I see these same values in my youngest daughter, who spent some time in India and is now applying to schools to study social work. In writing her application essays, she is addressing some of the same questions that I pondered years ago: Why do I want to do this?
David: It seems that for both of you, your desire to alleviate suffering or to work for social justice is not based on an abstract idea of compassion, but on a lived experience with other humans.
Chris: That’s right. When you put yourself in a different environment and you open yourself to the experience, it can influence you deeply. When you experience the disparities directly, it motivates you to seek change. It’s that experience of going outside your comfort zone, of trying new things, and then being receptive to what’s really happening, both the good and the bad.
David: By opening yourself up to other people and their way of life, you ended up choosing a career in which you work to eliminate tropical diseases from entire populations. How did you end up caring about what happens to villagers in Papua New Guinea? What facilitated this widening of your ‘circle of compassion?’
Chris: I guess it really came through making connections with the people there. When you work in the villages, you realize that their community is not that much different from your own. Yes, the setting is very different, the people’s experiences are different, but those social interactions between people are just so rich and so warm. You understand that their lives are rich. On the other hand, very simple things like basic health care can make their lives more comfortable. My work there nurtured a connection with a different world, which I love. I think it was that sense of community and the sense of acceptance into the community that really attracted me to working in Papua New Guinea.
David: I’ve been reading lately about apology in medicine. Unlike when I was a medical student, there is now an emphasis – at least in some medical training programs – on teaching physicians how to express sorrow or offer apology when mistakes are made in medical care. In a recent conversation, you mentioned that you had an experience in offering apology in the context of your research in Papua New Guinea. Could you describe what happened?
Chris: About two or three years ago, we were doing community-based research to determine the optimal frequency of mass drug administration for the parasitic disease lymphatic filariasis. With the support and concurrence of the National Department of Public Health in Papua New Guinea, we went into remote areas in the East Sepik Province where we would enroll communities and treat them with single-dose drug treatment for lymphatic filariasis. These are remote areas where you have to drive in at least four, five, six hours, and then hike in further.
About a week after we had provided treatment in one of these little villages, Kilmangleng we went to a neighboring village to enroll it in the study. A number of people there were very reluctant to participate. When we asked why, they said there was a young woman in Kilmangleng who had had a miscarriage shortly after she took the medication. They were very upset, and they were convinced that the drug had caused the miscarriage.
We sent the team back to Kilmangleng to investigate, and yes, they found a young woman who was probably in her mid-20s. She had a couple of young children, and apparently was early with another pregnancy during the drug delivery for filariasis. She took the drugs and about five days later had a miscarriage, and so she associated it, perhaps rightly so, with taking the drugs. Her husband and other people in her community were very upset that she had lost the child and they, too, associated it with the medication. Health care in that area is very limited, almost nonexistent, and she hadn’t been taking any other medications.
When the team reported this, we had many discussions to try to determine what had happened. According to the National Department of Public Health, the person administering drugs during mass treatment for filariasis is supposed to ask any women of reproductive age, “Have you had a period during the last month?” If they say no, they shouldn’t get the drug. The person on our team who administered the drug claimed that he had asked that question and that the woman had responded with “no.” There was obviously a disagreement here, and we had more discussions. Things weren’t going so well. The village leaders in this area became concerned about the safety of the drugs and people in the surrounding villages were reluctant to participate in mass drug treatment or participate in the program in any other way.
So I said to the team, “Maybe we should just sit down with the family and describe what happened. Maybe we should actually consider an apology, and say, ‘Look, we are really sorry that this happened, that you lost the pregnancy. We shouldn’t have given the drug to you. This was a mistake – we didn’t know you were pregnant. We meant you no harm. We don’t know whether this drug could have caused the loss of the pregnancy. It could have, but we’ve given it many times, all around the world – we’ve given millions of doses, and it’s been well-tolerated’.”
The team agreed. We returned to the village and sat down with the family and spent a couple of hours talking with them. We explained why we were doing this research, that it was a mistake on our part if we didn’t ask the question about her last period and gave her the drug. We asked if they would accept our apology. We had to have translation from English to Pidgin and from Pidgin to the local language and back again, so it took some time to express these feelings. Sitting down with them provided an opportunity to accept some responsibility for the mistake and to let them know that we would try to make sure that we don’t give the drug to pregnant women in the future. Our taking the time to visit them, listen, offer apology, and explain things calmed their anxieties. When we went back again to resume the research, the community welcomed us and participated in it.
I subsequently learned from people on our team who lived in the surrounding villages that our explanation and our apology actually provided a sense of relief for the woman and her community. In this area, when women have miscarriages, which are not unusual from time to time, they worry that they might have been caused by spirits, or witchcraft. In a sense, by our taking responsibility and saying that it could have been the results of the drugs, and that it wasn’t some sort of bad witchcraft, it provided a bit of relief to them. It was crucial that we took some responsibility and acknowledged that it could have been related to the drugs. Of course we didn’t know for sure, and we thought it very unlikely, but we took the time to speak with them in good faith and we apologized.
David: And this all happened in the context of a research study. Did anybody from the district health office visit the village with you?
Chris: No, but fortunately we had the help of the village counselor – the local elected official. He was open, thoughtful, and he was respected by the community.
David: Do you think you would have been able to visit with the family and had that kind of outcome without the engagement of a respected village counselor?
Chris: I’m not sure. We needed a bridge between our western style of cause-and-effect thinking (“There’s a disease; you treat the disease with a pill; there are side effects to the pill”) and the people in the village, who had a different world view. Somebody from outside the village – even if they are from Papua New Guinea and can speak the language – doesn’t have the trust of the community. These bridge-builders, the community leaders, are very important.
David: Programs of mass drug administration for neglected tropical diseases now reach 1 billion people each year. Severe adverse reactions are not common, fortunately, but they do occur. How might your experience in a tiny village in Papua New Guinea inform these large programs when bad things happen? Is offering apology something that should be done more often, or is it only feasible in a research setting where you’ve got a strong village counselor?
Chris: Just as with clinical medicine, people want information. Why are you doing what you’re doing? What value does it have? What are the potential consequences? For some of the large programs, communication isn’t as good as it could be. We have found, not only in Papua New Guinea but also in Cote d’Ivoire, that participation is so much better when we visit the communities and really explain what we are doing, why it’s important, what the potential consequences are.
David: What I’m hearing, Chris, is that if we took the time to establish good communication in advance, the challenge of apology would be made much easier.
Chris: That is absolutely correct. It’s all about understanding the risk and benefits. And people in these communities know that life is risky, and they weigh risks and benefits all the time in their daily lives. If I go to hunt in an area where a neighbor lives who I don’t get along with, and we wind up in a fight, is that worth it? If I go out a little further on this particular ridge, or if I cut down this tree, is the risk worth the benefit? But when someone like me comes in with ideas like mass drug administration, which they don’t know anything about, it’s hard for them to gauge risk and benefit, and they are suspicious – rightfully so. It’s all about communication.
David: One of the components of apology, particularly in public apology, is the issue of restitution. In a sense, the restitution in your situation was the restoration of a relationship, but no financial or other assistance given to the family at this point, is that correct?
Chris: That’s correct. I have thought about this, and it was an issue that did come up. In Papua New Guinea there’s a very strong pattern of restitution in the sense that if you are driving your car and run over a pig or hurt somebody, restitution is expected. A chicken is worth so much, and God forbid you should hit a child or anything like that, that’s really a major restitution. Fortunately I’ve never had that experience, but others have, and it’s required long months of negotiation.
Our feeling in this situation was that harm occurred, but we couldn’t be certain about the cause. With mass drug administration, obviously there are injuries and other things that happen in a close temporal association with getting the drugs. If people thought that everything that happened shortly after mass drug administration warranted them getting some sort of restitution, it would create a very complicated situation. Someone might fall and hurt themselves and say, “I was dizzy, I took the drug the day before, I should be compensated.” During mass treatment, though, we do try to provide basic healthcare.
David: So perhaps restitution would be limited to situations where clear casual association can be established?
Chris: Fortunately we’ve never had to deal with anything too severe, but what we are saying is that if something bad happens that might be related to whatever we’re doing in our research, we bear the responsibility of taking care of it. If someone were injured, we would do everything in our power to compensate or help that person. In the work I’ve done, we’ve had minor injuries – for example, a child bumping into one of our vehicles – and we’ve tried to provide care for those injuries.
David: This opens up so many questions. In the early days of the Mectizan Donation Program, some people who were heavily infected with the parasite Loa loa developed severe neurologic complications after being given ivermectin for prevention of river blindness. At this point, restitution is virtually impossible for them. Even if you were successful in finding them now, some 30 years later, would they welcome the distress of reawakening those memories? What would restitution look like?
Chris: Mass drug administration is not done with any malevolent intent. The early river blindness programs were well-run and a lot of effort was made to communicate and inform people of the risks. The risk with Loa loa was unknown at the time. The general situation we’re talking about is similar to that for vaccination. Is it worth it for an individual to accept a small level of risk so that the community can realize great benefit? And can those risks be further mitigated? These are tough decisions, but we encounter them all the time in public health.
David: What advice would you have for bright young people who might need to put some distance between themselves and someone who wants to marry them during their junior year of college? Particularly if they might already be curious about global health.
Chris: Not sure I’m much of a relationship expert, but… The first thing I would advise is get overseas if you have the opportunity. Experience something else. See and learn what the lives of people are like, meet people, look at different situations.
There are two elements to global health. The first is developing the tools that will actually work. The second – and most important – is delivering those tools, and that requires in-depth knowledge of different cultures and different people. You have to be aware of the challenges of providing the tools effectively in these communities, and sometimes you encounter some really complex political-social problems. So my second piece of advice is similar to the first: make connections with people and understand what their lives and desires are. This is absolutely necessary to have lasting global health impact, to build sustainable infrastructures.
I’ve been trying to build bridges between our academic efforts and the Ministries of Health and local politicians. I let them know that without their help, none of my work would be possible. So my third piece of advice is to make sure that, as a scientific investigator, you stand back, take a backseat as much as possible, and try to put the local people in the driver’s seat and help them accomplish their goals. That’s what will make the work sustainable. That’s a lesson I’m beginning to learn.
David: You’ve mentioned several times this theme of connection – connection at a human level, connection to community, and the importance of bridge-builders as connectors. Connection is such an innate humane need. One of the things that fascinates me about global health is that we make these connections over great distances.
Chris: Certainly this is easier with the communications we now have. That’s what I spent my morning doing – emailing people in Brazil, Papua New Guinea, Cote d’Ivoire, Ghana, and France. When they send you an email, respond! Their emails are important, their concerns are important, and keeping that connection is important.
Being there with them ‘on the ground,’ having personal face-to-face interactions with people, you’ve got to start there. After you develop that relationship, then you can sustain it with these communications. That’s the fun part. On the other hand, it’s also the demanding part because communication takes a lot of time. By doing all those emails this morning, I didn’t make any progress on writing my scientific papers. In global health, you have to fit all the different pieces together, and, in addition to that, keep your own family happy. It makes for a very rich and rewarding life though, that’s for sure.
Christopher L. King, M.D., Ph.D. is Professor of International Health, Medicine and Pathology at Case Western Reserve University. He earned his M.D. and Ph.D. in Epidemiology from the University of Michigan. His research includes schistosomiasis, filariasis, malaria, immunoparasitology, immunologic response to prenatal parasite exposure, and vaccine development.