Tales of the Bottom 5%: How do you treat an Addiction to Suffering?

I just ranted and raved about the hells I discovered today, working on what was originally just to be a simple task of correcting the English of a stack of adverse event, termination / withdrawal from the study, and protocol violation reports.

Just so I don't bring you entirely there with me, I first want you to know 2 things: 1) for all the frustrating, angering crap I'm about to share with you, know that the Karachi CF site has had an immensely successful 95% participant retention rate, so all of this is telling you what happened to the other 5%; 2) my questions at the end of reflecting, spewing, and crying tears on fire with anger (I have never cried out of anger before) are the following -dear God and dear Medicine, please teach me what is behind this behaviour, teach me all about addiction, teach me about how deep the abyss of trauma plummets down, and how one treats an addiction to suffering.

I think part of the shock was that it was just so unexpected. I mean, I wasn't going out into the field, I was sitting at a freakin' desk all day, and the task was to correct the English syntax, vocab, verb conjugation, etc of a bunch of forms that had been filled out by the Field Coordinators months ago.

So you start, and see one after another "mother doesn't agree to have her child in the study because child doesn't like the taste of study food and vomits when you try to feed it". And you recognize a series of lies / excuses:

1. First, let's not kid ourselves, it's not the mother who didn't agree -it's the father and the grandmother
2. Since when did it matter whether or not the kid likes the taste of the food? Any other Brown people out there? You know what happened to us when we didn't "like the taste" of certain eggplant curries at the age of 4 or 5? We ate it or mum spanked us with gusto. And that was in "the West". When I joked about this with my supervisors they laughed with familiarity.
3. Oh, and absolutely. If the child vomits, it must be the fortified cereal or lypholized meat. Poor hygiene? Eating inappropriate spicey curries as a complementary food as a baby? Cat infestations passing around a good bout of toxoplasmosis (a feline-transmitted parasite)? No way! It must be the cereal (okay of course, there's always the odd chance that it actually is the cereal, but you get my point).

But you know, fine, I could deal with that. Then. Boom. First serious adverse event (which was not related to the study because it took place before the intervention began) I read about: you think it was the severe diarrhea (endless pages of that), or meningitis? Hell, no. It was a baby who started with some quack-treated (thus, untreated) abdominal infection, passed lots of bloody stools, and then nothing at all, and then wound up needing a laproscopy, where damaged mucosal and serosal tisse were found in the ileo-colon, with perforations of all kinds (including appendix obviously), further requiring resection of pretty much the whole bowel (meaning, they just removed a whole bunch of it). To what avail? She died of vaginal hemorrhage despite it all. A painful, miserable death.

And you won't believe the quackery here. I hated them passionately, all those quacks (fake-doctors with no qualifications) that chill out and rob the poor in these squatter settlements and know diddly-squat about medicine. A friend of mine in the department who worked on CF for the greater part of this year was telling me about a case (unrelated to our project) of a pregnant woman in these urban slums who was hemorrhaging, but couldn't leave her house because her husband wouldn't let her without him, so a quack came and paid a home visit. You know what he gave her? Aspirin. Now, if you're not medically inclined, you know this is just plain stupid. But if you do, you know that not only would it not help, but actually makes the hemorrhage worse (thins your blood). So sure enough, by the time her hubby found out and came home, she was a goner.

But okay, it's okay to hate the quacks right? What self-respecting health care professional wouldn't? Except I the contempt and anger that made me cry was not towards them, it was much worse.

Remember how despite breaking my heart over that poor baby girl a few blog entries ago, I still found it possible to show compassion to those poor desperate drug-addict parents, in my future-doctor heart? Today, I wanted blood. Those same parents. If they would have been in front of me, I would have done it myself. How dare they.

It was about another baby who stubbed her toe and it bled for 3 days. Coagulation factor disorder right. Maybe von Willebrand's... something involving the extrinsic pathway that we learned about in heme. So the docs on our team go and explain to the mother that this condition can be medically treated after initial clotting tests are run. A few years before, the mother had an older child who fell and hit her head and went unconscious, and instead of rushing her to a hospital (and despite the dire poverty, there are government hospitals which are free for these kind of emergencies okay, don't kid yourself), the mother just made her daughter lie down to rest. The girl hemorrhaged internally and went brain dead. Now in fear of seeing this trauma happen all over again, what does the mother do? Let the doctors advise and prescribe right? Wrong. No matter how many times the team went to explain how important it was for the child to get treated, precisely to prevent this from happening again, she went into a full out denial, and decided to have the child treated by the community quack, and denied the child further testing and medical care.

At home, you know what would have happened? The state would have taken that child from the mother and saved it's life. It's not just negligence here, it's not lack of education... it's not wanting to know, not wanting to learn, it's what looks like running away from your fears, but is really just feeding an addiction to suffering. And the cost is that baby's life. Not a shitty life. A slain life.

It was all I could do, but go to my supervisors and plead that we try to go back to this 'closed case' 2 months later, and check what happened since then -maybe the mother finally broke and the child can still be saved? She may be in denial, she may have given up, but we, we who know, we who got involved, we cannot just stand by and watch -we cannot be accomplices to this crime. We have to go back. We cannot give up on that baby.

And you know... there's my heart again... we cannot give up on that mother neither.

So teach me. Teach me about trauma and what it's done to this mother's brain and behaviour. Tell me about addiction. And please, I beg you with all of my being, teach me how to treat the addiction to suffering.