Time of death 8.30.
Cause of death: Sudden deterioration.
We were in a meeting when Rafiq expired at 8.30 in the morning. His strength had faded away and he eventually left. The news is shocking and leaves no time for contemplation. In the few moments one has in these situations I feel my head exploding in a futile effort to find answers. I had seen Rafiq two days ago and my colleague reviewed him again yesterday. He was sick but stable. He had played with the rubik’s cube that was in front of him. We had adjusted his medication to accommodate his current status.
We leave the office to go to the hospital where the body is about to be taken away.
While those that surround her outside the main entrance are silent with their head respectfully bowed, Rafiq’s mother’s expression is not reserved and she cries, or rather wails, her weight supported by her female relatives. I place my hand over her head in an attempt to soothe her sorrow. In her grief, which I imagine is worse than my guilt, she takes time to thank MSF for all our support. He is finally at peace. His mother’s words as she leaves in the car “it was my son’s destiny”. She stayed in the hospital for 13 months.
The room is disinfected, his infected body lying in the flowery, red blanket that covers him. The nurses and general population of the hospital are ordered to continue with their work, perhaps a sensible option given that emotions need to be contained and others need not be scared.
Every action has a reaction and in the case of Rafiq, two questions will always remain; did we do the right thing by treating such a sick child or was palliative care a better option? Could we have pursued this option more carefully? Did we cause more harm than good for Rafiq? He will not have an autopsy which means that we will never find out the exact cause of his death. I am not sure if, as health professionals, we can ever be certain of anything. We use our studies to guide us, looking at the evidence presented before us, but there is never certainty. While I knew him, he had blood tests every week, he had fluid drained out of his sickened belly every two weeks, and we gave him a total of 9 drugs every day. His older brother sent money to the family every week from Russia and the mother never wanted our help in paying for her son’s treatment. Her determination to help her child was not only admirable but of unreserved selflessness. My problem is that I think I had a hunch that he would not get better, and though I was honest about this to his mother perhaps I should have been more direct with her. She once asked whether she could take Rafik home, but we had suggested that if he went home he would surely die. He died anyway.
Perhaps, through Rafiq, we learnt about how illness can be treated here in Tajikistan. We battled with the authorities to start his treatment. After his treatment started, I realized that this was not a place to treat children who are sick, and it worried me. He was confined to what is essentially a ‘sanatorium’ where he remained as a sufferer of disease in exile for 1 year of his life and now he will be called a ‘treatment failure’ for statistical purposes. What he allowed us to do was to help create a system where better monitoring took place, like you would do in any hospital setting. With the help of a bright young MSF nurse I saw a change in the local nurses, in their motivation to improve the care of their patients. In a culture in which the nurses are generally subordinate to doctors, there is a sense that a little bit of knowledge was given back to the gatekeepers of the child.
The legacy Rafiq leaves is one that makes bitter taste. In Tajikistan, there is little room for discussion of diagnoses; uncertainty in diagnoses appears to be a sign of professional weakness. I recently attended a consilium for another patient and there was a sense that the trust the consilium members had for MSF had diminished, the sense that we were wrong and they were right. This is a situation I have tried to avoid in this kind of work – the language of “they and us”.
I never saw the family again after his death though I have the mother’s telephone number and perhaps, when my own guilt is eased, I will call her. For a few days, the name Rafiq continued to slip out, but we are distracted by the ‘new’ patient, the ‘interesting’ patient, and slowly Rafiq has faded away, though in moments of silence, he appears with his mother, shy and teaching me how to count to 20 in Tajik.