Death and dilemma

In today's blog Terry explores how her conviction in it being healthier to express emotion was tested by a heart-breaking dilema...

Emotions don’t really fall into the category of stigma the way TB does, yet the Tajiks seem very frightened of evoking too many of them. They go out of their way to avoid displays of emotion, seeing people cry upsets them terribly, and their language has remarkably few words to describe feelings. “Upset” and “angry” - two different concepts in English - get the same word in Tajik. The Tajik word “sikh” means both bored and sad. Huh? I’m sorry, but in my emotional life, bored is really not the same as sad!

In trying to respect cultural differences such as this I tend to get bogged down in philosophical musings on the nature of emotion and the expression thereof and whether or not it is appropriate for me to be teaching my staff and our patients our Western ideas on dealing with emotion. I know the research, I’ve seen the clinical evidence, I am convinced that it is healthier to encourage and express emotion, to process grief and other emotions than to avoid them and keep them inside where they fester and burn and become somatic problems. Yet I doubted...

Remember Yusuf? The 14-year old on our MDR-TB ward who can’t gain weight and who nearly died on us in February? Well, thankfully he didn’t die, but sadly, his Mom did. She died on March 17th. We only told Yusuf last week.

It has been a terrible dilemma. She died without our team being made aware that she was failing, so we weren’t able to give any advice or counseling to prepare him for her death. The family chose not to warn him or tell him anything because he was so ill himself, so he was not taken to see her, was unable to have any last communications with her.

So how then to tell him? I had my ideas, and instructed Yusuf’s counsellor. But Yusuf’s doctor was afraid for his health and didn’t want him to know at all. Yusuf’s father follows doctor’s orders. My counselor was unable to go against so much opposition and perhaps was struggling with her own Tajik tendencies to avoid intense emotion. So she kept putting it off, under the ruse of not wanting to go against the father’s wishes. In the meantime, Yusuf was asking about his mother and people were starting to lie to him. They even had his aunt speak to him on the phone pretending to be his mother, which he of course saw through right away.

I tried to explain how detrimental this was going to be for him, that although the intentions to spare his feelings were good, the result was going to be the opposite. His trust in others will be ruined, it shows a lack of respect for him as a person, the processing of his grief will be out of sync with the rest of his family, he will feel shut out - in short it’s going to make him feel even more cut-off from his other loved ones than he already was.

Yet there was so much worry that his grief would tax his over-worked lungs and heart more than he could bear - and to be fair - I think no one could face their own breaking heart in the face of his certain despair.

Another part of the dilemma was the fact that Yusuf is getting better. He has been cheerful and happy and he has actually gained a bit of weight. Who could face telling him?

We talked about it at the office a lot, Andy and Christoph and I, our national staff nurses and MD’s, as well as the counseling team. We were all concerned for him, but we could also understand the reluctance. I gently - doubtingly? - pushed Yusuf’s counselor to find a way, but she seemed stuck in avoidance.

It took an ultimatum from Christoph, something along the lines of : “if you don’t tell him by Tuesday, I will!” to unstick her.

She rallied. She made the call to his father, they set an appointment to tell Yusuf. His dad brought reinforcements - the grandparents, the little brother, the aunt. Yusuf’s doctor was there, the nurses were there.

It went as well as can be expected. He cried. He asked questions. He cried some more. It didn’t take him long to figure out how long he’d been left in the dark. Yusuf was SO angry. He was more angry than he was sad. He looked at the nurses, he looked at the MSF staff, then he struck with the only weapon he has:

“I will not eat anything anymore because you have all lied to me!”