Teaching and Learning Moments
A 10-year-old boy, an African immigrant who lived with his mother, presented to my outpatient pediatric clinic complaining of left ear pain. While I was surprised to see a 10-year-old presenting with acute otitis media, I was even more surprised by how well behaved he was. Young patients did not often let me look in their ears without a fight. Then came the most unexpected surprise of all—my patient’s chart revealed a diagnosis of HIV. It also revealed that he did not know his diagnosis and that, at his mother’s request, caregivers were prohibited from telling him. My patient was being seen by an infectious disease physician, had CD4 checks to monitor his disease, and was on the necessary medications. Medically speaking, he was being treated appropriately, but this was treatment of the disease, not treatment of the whole patient, as I was being taught in my classes.
My first reaction was that he deserved to know that he had HIV. We teach children about their cystic fibrosis so they can become a part of their treatment. Shouldn’t we teach older children about their HIV? Pediatricians discuss sexual activity with 10- and 11-year-olds so as to not miss sexually precocious children. Isn’t it irresponsible to leave this child in the dark? Didn’t he have the right to know? For the first time in my brief medical career, I had an ethical conflict. As a health care professional, disclosing the condition to him would be inappropriate, but as a human being I felt I was betraying him.
I did not disclose his diagnosis, and my attending physician felt we should manage his acute medical condition and leave the education discussion to the physicians who saw him more frequently, but I was still angry about the situation. I felt I was lying to him. This was not why I went into medicine.
Thinking back on this case now, I wish I had known more about his mother’s perspective. Likely, she wanted the best for her son. Perhaps she herself had HIV, which would give her perspective on how, and when, to give such devastating news to her son. If nothing else, she knew her son better than I did. The differences between our cultures, her understanding of HIV, any guilt about transmission were all things I wish I could have explored, but I was too unsure of myself to ask these questions then.
I discussed this child’s case with his infectious disease physician, and she explained that in these situations, the child may already know about his condition. In this case, his mother planned to tell him at age 11, so he could live one more year free from the burden of knowing about his HIV. His mother had a plan for what she would say, and his physicians offered to facilitate the discussion. Though I was glad they had a plan in place to tell him about his illness, I still had concerns. Doesn’t he wonder why he takes medications every day? Why he has to see doctors so frequently?
As a third-year medical student, applying medical ethics to real-life scenarios is very new to me. The cases I learned in class demonstrated different ethical perspectives, but, unlike this case, they had predetermined endings. This child’s mother and health care providers were working together, keeping the child’s best interests in mind. Perhaps I need only to broaden my own perspectives to understand that patients and families may disagree with my point of view while having perfectly valid points of view of their own. There is not always one correct solution.
The author would like to thank Dr. Veronnie Faye Jones and Dr. Karen Hughes Miller for their continued guidance.