Empathy and Communication with HIV Health Workers in Botswana

There are many thousands of children and teens infected with HIV in Botswana, the virus transmitted to them at birth. Sometimes the same healthcare worker will follow these children from birth on, and many of these toung people  are now in their teens.

About 30 doctors and nurses gathered for an NVC training a few weeks ago at the Baylor pediatric clinic in Gaborone, the capital of Botswana. I asked them if they had had any situations that same day where they tried to communicate something to someone and they felt frustrated or disappointed at the results. A woman doctor raised her hand and said that one of her 17-year-old patients, whom she had known since he was an infant, told her that he was not going to continue taking his medicine. Even after she told him that he could die, he said he didn’t care.

I felt torn at that moment— between wanting to provide practice in having these conversations with their patients by coaching some communication role-plays, and just giving empathy, empathy, empathy to this room full of people who are dedicating themselves to working with children and young people living and dying with HIV and AIDS.

The group decided for me, by calling out all kinds of suggestions to their colleague for how she could respond to her young patient. Clearly, the energy in the room had shifted to wanting to get some ideas about how to carry on these conversations.

We spent the next hour and a half with numbers of different doctors, nurses, social workers and counselors role- playing how to speak to a young person in this situation. Every single one of them has encountered this over and over.

One exploration that touched me deeply was when the doctor who had been role playing the teen said, “I’m in the circle now”—meaning  “I’m going to share something outside of my role as a caregiver.”

Sometimes, he said, we have to stop trying to “win” with our clients: if all we are doing is trying to get them to comply with our plans, our protocol,  and our needs in order to feel successful, we aren’t creating the quality of relationship that will be a ” win-win” —the essential ingredient for building trust and giving these kids a sense of understanding, respect and empowerment.

“What does that mean”, another asked—that we say, “Okay, go die?”

We began to explore what is for me one of the most challenging aspects of the path of Compassionate Communication—how do I genuinely value and connect with someone’s choices and experiences,when I am terrified that they will hear my connection as agreeing that they should do something that I think will be harmful to them?

How do I give empathy to a teen who says he won’t take his medication when I believe that his doing so will kill him?

We decided to try role-plays with the doctors and caregivers playing themselves, looking for ways to hear the young man’s needs, to empathize with his needs, and also to hold onto our need to support his health and—yes, our need to make a contribution that has meaning and purpose.

Early in the role-plays, we learned that the boy was very angry at his mother, who had birthed him with the virus, and that he had expressed at some point the desire to ” expose” his mother as not giving him the love and support that he wanted. Then we learned that the mother had been present in the doctor’s office, so we added her into the role-play.

One of the other doctors present said that she was facing the same situation with a 14-year-old boy, and she wanted to know what she is supposed to say when she explains to him why he needs to take the drugs, and he says no.

I said that one of the practices of Nonviolent Communication is to look for the Yes in the No. What is it that he is saying Yes to? And can we ourselves become curious about what it is that he is saying Yes to— can we get curious about what is behind his No?

We explored this in many role-plays and conversations during the rest of the session. We saw that when the doctors really stepped into the shoes of the young man, it was much easier for them to imagine what it was that he was saying Yes to. Some autonomy, some control over the life that had been given to him with this disease. Some choice about whether he wants to continue on— perhaps the ultimate expression of autonomy. We also noticed in several of the scenarios where doctors were involved with teens, that the teens’ anger at their parents often would be expressed by the teens saying that they would not take their medicine.

We want to use all of our observations, to gather everything that we notice and all of the information that we have, to help us guess what needs these teens are meeting in refusing to take their medicine. In several cases we guessed that the medicine and the choice to take it was a source of empowerment for the teens – it was a way of getting their parents’ attention, of getting their parents to hear what was important to them, and in some cases to get their parents to agree to things that they wanted in their own lives and felt otherwise powerless about.

About an hour into this, it became apparent that there was deep hopelessness and discouragement among the healthcare workers. How could there not be? Several of them talked about how by the fourth patient of the day, they would find themselves sinking into indifference, and how scary and disappointing that was. We began to shift our focus to care and empathy for the healthcare workers.

We explored what systems are in place in the clinic to support the healthcare workers. It turned out that all the members of the Wellness Committee were present, and they were some of the most active participants in the workshop. People spoke about how important it was to talk to each other during the lunch breaks and some of them expressed that they wanted support for private therapy for themselves because they saw how their problems at home were preventing them from having the empathy and patience they wanted and needed for their own patients.

Our time was coming to a close, so I asked people how they would like to spend the last 10 minutes of the session.

The clinic director asked me if I could come back later this week. We figured out a time that I would do this, and I suggested that we work on self-care and self-empathy for the staff at the next session.

A few days later, I returned to the Clinic, a hospital- sized building in the heart of Gaborone, the capital city of Botswana. Up to 50% of the population in Botswana is infected with HIV. More doctors, social workers and counselors came to this session.

I felt so inspired and alive by the openness to Nonviolent Communication training on the front lines of the AIDS epidemic.

In this session we focused on using Nonviolent Communication to create a culture and  structure for compassionate communication among the staff.

I will write more soon.

We are looking for NVC trainers willing to go to Botswana to continue this important and heartening and deeply meaningful project!