Dare to Care

Dare to Care

I recently completed a new book with my friend and colleague Dr. Jan Bonhoeffer.  This book is a series of letters from a professor of pediatric medicine to his goddaughter, who is just starting her career as a medical doctor.

This is one of the more beautiful and inspiring stories.  Enjoy it!

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I was about 37 years old when Johan came into the intensive care, with salmonella sepsis. The first day that I met him, he was in a single room in an old hospital. The door was on one side of the room, and there was a big glass door on the other side, leading out to the hospital garden, which was next to the river. He was skinny, pale, grey and listless: almost lifeless. He was 14 years old at the time.

“How are you?” I asked him.

At first, Johann didn’t answer me. He did not want to relate with almost any of the staff in the hospital. Finally, after a lot of waiting on my part, he said to me, “Look, I don’t want to be here. I don’t even know why I’m here.” I told him that he was seriously ill, and that we would be ready to help him if he wanted. He told me he did not care, and did not want our help.

After about half an hour of trying to talk with him, I left the room. I went to speak with his treating physician. Johann was HIV-positive, he had been treated by my colleagues as an outpatient for many months. He was not taking any HIV medication, although it was available. His mother had died of an HIV-related illness, and she had also refused any medication. Johann was living in an orphanage. I discovered that he had recently attended a summer camp with the other children from the orphanage, and it was there that he had caught severe salmonella sepsis.

With all this new information, I went back to the room, together with my friend and colleague Christoph, the treating physician. I sat on the bed.

“Look, Johan,” said Christoph. “You may not understand fully what is going on here. We are not talking about whether you take your medication, or whether you would like to stay here or not. The question that you need to answer now, or at least within the next few minutes, is whether you want to live, or whether you want to die. If you want to live, we are here to help you. Otherwise, you are close to dying.”

“I want to live,” the boy responded, without hesitation.

“Look,” said Christoph, “if that is really true, then you need to do what we recommend. Otherwise, you could be dead tonight. That is where we are.”

“Fine,” said Johan.

Already, I was quite surprised. With me he had been totally blocking. But with this other doctor, who confronted him in a much more direct way, he responded. It turns out he had known Christoph for a long time, and he trusted him.

Johann received antibiotic treatment, and he got better from the sepsis. Then, after a few days we started on anti-retroviral treatment to address the HIV.

A few days later, I was sitting in my office, looking at his lab results. I could see that he still did not have any lymphocytes. His liver functions were a little elevated, but not to the degree I would have expected with anti-retroviral treatment. I did not see that the HIV PCR had gone down. There were also no signs of any side effects from the drugs. So I telephoned Christoph again.

“Christoph, I just looked at Johann’s charts. His hemoglobin is normal, his white cells are fine, he has no lymphocytes. His liver functions are up, but in the hundreds, rather than the thousands, and his viral count still has 50,000 copies. These results are unchanged, despite the fact that we are giving him antiretroviral treatment.

Christoph was a consultant, he would not tell me what to do, because Johann was under my care. He was very professional in that way. “What is your interpretation?” he asked me.

“It seems like we are not effective with the treatment.” I replied. “We don’t have any side effects. Do you feel he may not be taking the medication?”

“I do not “feel” that he’s not taking the medication,” replied Christoph, making little air quotes with his fingers, and smiling to me. “I know for a fact that he is not taking his drugs.”

Christoph came down to my office and we went together back to Johann’s room. He was looking so much better, having recovered from his sepsis. But when he saw two doctors coming together, with great urgency, he knew something was up. He looked startled and suspicious.

“Johann, where are the pills?” Christoph asked him, very directly.

“What pills?” Johann responded, acting very innocent.

“Your antiretroviral treatment, your HIV treatment. Where are the pills?”

“I’m taking them,” said the boy.

“No, you are not,” Christoph replied, without missing a beat. “Where are they?” Johann tried to maintain his posture.

“So sorry, Johann,” said Christoph. “This is really important. I’m going to check everywhere.” He started to open all the drawers and then to check the bed, and the pillow. Then he lifted the mattress and…boom…there they were. Six days worth of tablets. Dozens and dozens of tablets.

Johann looked completely ashamed. He shrank into himself, and he didn’t want to talk anymore.

“Okay, fine,” said Christoph. “Whatever happened, now we know that you did not take your treatment. But we need to know why.”

“I don’t know,” mumbled the boy.

“Come on, if you want to live, we have to find out why. There has to be a good reason why you are not taking your medicine.”

Christoph began to offer the boy all kinds of legitimate reasons why he might not have taken the medicine. “Are you afraid of something? Are you afraid of the side effects? Do you have trouble taking them? Are there too many pills? Do you get nausea? Do you have some other kind of bad experience? Should we find a different way for you to take them?”

Each time, the boy said, “No, that’s not what it is… No, that’s not what it is.”

Finally, Johann offered us the clue. “My mother also did not take her tablets,” he said, almost as a justification for why it was legitimate for him to do the same.

“Aha,” said Christoph. “So you feel that you should do what your mother did?”

“Yeah,” said the boy, quietly, looking down at the bed.

Slowly, we pieced it all together. He had the same disease as his mother. His mother had died. He felt guilty to take the treatment that his mother had not taken. Why should he live when his mother had died?

“You know that your mother died.” Christoph continued. “She could still be alive if she had taken the tablets. Do you know that?”

“Yeah. Kinda.” The boy shrugged.

I started to understand. He did not want to blame his mother for having refused treatment, but he also did not want to be a traitor to her. He was in a double bind. Neither course of action seemed to be okay.

“Look,” Christoph continued, “If you really want to live, you have to start taking this treatment. Otherwise, this virus will kill you just the way that it killed your mother. The next salmonella, or the next bug that is going around will be the end of you, unless we can get your immune system working again. The only way to get your immune system working again is by treating this virus.”

Somehow, something got through to this boy that day. It was not so much what was being said. Johann had heard all this a thousand times already. It was how it was being said. Christoph was not speaking to him as a detached medical observer, as he had been trained; he was speaking with great authority, like he really, really cared. He was speaking the way that a father would speak to his son.

Johan was very silent, he was looking down at the bed, obviously struggling within himself. Then he slowly nodded his head, and very very quietly he said “Okay.” But this was not the same “Okay” as before. This one was not to appease us. It came from his core.

Christoph did not say anything in response. I remember this moment so well. He simply moved over to the boy, and put his hand on the teenagers knee. He looked the boy in the eyes, with an unwavering gaze. And then, finally Christoph also said, “Okay.”

It was a decisive moment.

There was a pin-drop silence in the room. Very few words. A deep agreement: “We are going to do this together.”

Christoph looked at me, and he nodded. We left the room together. Outside, we spoke and reflected on what had just happened in the room. Christoph felt completely confident that this was all we needed. It was handled.

I went back to my office, and I instructed the nurses to stay in the room whenever Johann took his pills, and to make sure he swallowed them. We would continue to measure his blood samples, to check his viral count, his liver functions, and his lymphocyte count.

Sure enough, over the next days and weeks, everything improved.

Two weeks later, he was much much better. It was time for him to go back to the orphanage. Once again, I went to the room, together with Christoph.

“Well, Johann, we need to start planning that you go back to the orphanage,” said Christoph. “Let’s talk about how we can make sure that you take your medication, once you are back there. That is going to be the key.”

“Yeah. Don’t worry. I will take care of it. It’s fine,” said the boy.

“I’m sorry, Johann,” said Christoph, “That’s just not good enough. You need to tell me how exactly we are going to be able to check on this. We need to coordinate this with your caretaker.”

”There is no need,” said the boy.

“Look, I really want to make sure this happens. We are going to meet again in four weeks. I want this to be a success and not a failure.” I could hear the determination and decisiveness in Christoph’s voice. It was palpable, in my own body.

It was obvious that Johann was very resistant and very unhappy about the prospect of going back to the orphanage. We could see him shutting down, becoming more constricted. But he knew how well intentioned Christoph was, he could feel how deeply Christoph wanted him to live. No matter what, with Christoph he could stay open. So Johann started to speak with this doctor about the orphanage, that it was not easy for him to be there. He talked about the trip to the camp just before he came to the hospital, and how hard that had been as well.

“Tell me for real,” asked Christoph. His tone let the boy know that any answer was going to be all right. There was no judgment here. “Are you ready to go back to the orphanage?”

“No, I’m not,” the boy replied, without hesitation. “I don’t like that place at all.”

“What is it about the place? Christoph asked, very gently. “Is it the physical environment, or is it the people that you are most concerned about?”

“Basically, everything,” said the boy.

“Do you have friends there?”

“Kinda,” said the boy.

“What about your mother? Are you able to talk about your mother and your memories of her there?”

“No,” said the boy.

“Would you like to talk about your mother with someone?”

“Yes. I would.”

“We can surely try to find a specialist for you, in the hospital. Or do you know already someone who you would like to speak with about your mother?

“Yes,” said the boy, with more strength and certainty in his voice than I had ever heard in all these weeks. “I want to talk with you.”

Christoph hesitated. He glanced at me. We both knew that he was not a psychiatrist or psychotherapist, and that the hospital would not allow him to schedule time for this. “I may not have the time and space to give you what you really need,” Christoph said finally. I think we could both feel the sadness with which he spoke. “I am an HIV consultant. We could find a psychiatrist or psychologist to work with you.” It was so obvious that the boy was very disappointed by this answer. He was crestfallen. For once in his life he had called out for what his heart wanted and needed, and he was hearing a “no.”

There was an uncomfortable silence.

Finally Christoph broke that silence. “You know what? Why don’t we meet? Outside the hospital, not in my HIV clinic, or here in the intensive care unit. Why don’t we just meet someplace, and talk about your mother? Just you and me?”

We both knew, Christoph and I, that this was against protocol in every possible way.

Johann visibly brightened. His eyes were suddenly shining. He was all there.

It was agreed. Johann would go back to the orphanage, after staying a little longer in the intensive care unit. Then, it was agreed that he would meet with Christoph from time to time privately, like a friendship.

The boy was discharged, he was no longer under my care. I didn’t think about any of this for quite a while.

I met Christoph about a month later. This was when I heard for the first time that Johann had moved into Christoph’s house.

Christoph had a wife and two sons, a little older than Johann. He explained to me that his wife was a nurse at the HIV clinic. She met Johann each time he came in for his checkups. Both of them could feel that this was not going in the right direction, and he was not going to make it alone. They spoke about Johann at home, and they agreed together to adopt him, and to make him a part of their family.

Christoph and his wife did not just help Johann to take his medication, or even help him to stay alive. They gave him a completely new start on life. Johann explained to his sons, “This is Johann. He has HIV, but you do not need to be afraid. He leads a very normal life. He is not dangerous, he is just like everybody else. He just happens to have a virus, for which he is getting medication.” The three boys became like normal brothers. They would sometimes all sleep in the same bed at night, and swap stories together in the dark.

Johann became fully part of the family. I never saw him again, but I did hear from Christoph recently. Johann is in his late 20s now. He got a great education, and he is very successful in business. His virus is completely under control, and he is living a normal life. A happy life.

Obviously, Hannah, this is a very unusual situation. I am not suggesting, that you should adopt your patients on a regular basis. You would quickly run out of room in your small apartment. But this story demonstrates that the real disease Johann was suffering from was a lack of connection, the feeling that no-one dared to care. As soon as that disease was addressed, at its roots, everything became good for him. He became whole, and he became truly healed. He did not recover from his AIDS diagnosis, but his condition became manageable, and he became a whole happy human being.

Although this particular solution is not something that could be easily duplicated, the important thing is that the medical system, as it still exists today, would not really think about this is the real problem. Everything is addressed at much more superficial level.

In a pretty extreme way, Christoph demonstrated to me, in all his interactions with Johann, including adopting him, what it means to be really truly deeply committed to being a healer. It means that you might even go to the extreme of adopting someone, if you really want to be bring healing to the world, and not just to be a technician who clocks in and clocks out. The commitment to wholeness is so great, that it knows no boundaries. When your commitment to healing becomes greater than your commitment to just “doing a job,” you learn to start looking, in every interaction, for what is underneath the presenting symptoms, just as you would with anyone you love.

By |2019-09-11T13:26:48-08:00September 11th, 2019|Contribution and Service, Read Articles|

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