Saturday, November 25, 2006

The deepest cut - A patient encounter

Yesterday, my last patient was a ten year-old boy who came in with a small fraction of the medicine he was supposed to have leftover, suggesting that he took nearly twice the prescribed dose. He came to the visit alone.

The boy, named Patrick, was one of those children who is accustomed to acting like a grown up. He looked at me solemnly, sitting with legs crossed, his school uniform well-kept.

I spoke to Patrick for a while regarding his ARV adherence.

His answers were measured but tentative, as if he felt ashamed of his recent performance. He preferred to say them in SiSwati, though his English was very good.

He told me that his younger siblings (he has many) were playing “doctor” with his medicines, and he thinks that they spilled some. While this explanation was far preferable to the possibility that Patrick was simply taking way too much medicine, I was not sure if he was being entirely honest.

How could he be honest? He was a ten year-old alone in a room with a foreign doctor and unknown translator, no doubt wanting more than anything to escape unwanted judgment and scrutiny, to defend himself, to make me stop asking him questions.

I told him that, when I was ten years old, I never went anywhere alone because I was too scared. I told him that I only spoke one language, and that I could never remember to take my medicine (daily chewable vitamin).

This made him smile faintly.

After speaking with Patrick, I was concerned that he may have actually poured out a few ounces of liquid medicine in an attempt to show us that he had actually been taking them well.

He wanted to be a good patient, but he didn’t understand the dosing. He didn’t understand that poor adherence leads to resistance, which leads to sickness and eventually death. He had recently watched his mother meet this fate, but now was not the time to bring up such things.

With the help of our clinic’s social worker, Nosipho, I contacted the patient’s 26 year-old sister, who lives in a neighboring town to the boy, and asked her to come in. I sat down with her in the clinic and learned even more about Patrick’s circumstances.

The boy’s primary caretaker is his father, who reportedly drinks too much and does not know his son’s HIV status. The father does not know for two reasons: (1) The rest of the family believes that he gave the child HIV during a cutting ritual some years ago. (This is a much less common route of transmission among children when compared to transmission during birth, but still possible.) (2) The patient’s family worries that, if the father finds out, he will get drunk and tell the entire community of the child’s status, leading to stigma and an even more difficult situation.

So, the patient’s fifteen year-old sister (the next oldest in Patrick’s household) had been supervising the dosing and administration of the medicine, a responsibility that she may or may not be qualified for.

Given the patient’s recent adherence record, I was beginning to have my doubts.

After much probing and troubleshooting, we made a plan.

The older sister has a one-room home, and cannot host Patrick. She can, however, check in often to ensure that Patrick is sticking to his regimen, and she can mentor the younger sister until she is comfortable supervising.

Both sisters (the 26 year-old and the 15 year-old) plan to come back to the clinic next week with Patrick in order to review the importance of ARVs, to go over their correct dosing, and to find an appropriate hiding place so that the meds are not mistaken for toys.

If the 15 year-old sister seems up to the task at that time, we will continue the ARVs. If not, we will have to stop Patrick’s medicines.

The risk of toxicity and resistance are too high if he continues to receive faulty doses.

What then? I do not know.

It is a frustrating case.



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