Difficult thoughts

I'm sitting here waiting out the torrential downpour after a fireside chat that got me inspired to write about a few things I've noticed about the hospital and health care system here. Initially our discussion was to be on "culture" and medicine, specifically about representations of illness in Kenya. We read a couple articles about specific and general representations of HIV and as always with these types of articles, they made me shudder a little bit. I realized the reason why is because so often culture (especially "indigenous cultures") are represented as static. For example, some of the ideas about the centrality of procreation to "African culture" (first of all don't get me started on the absurdity of the classification and generalization of an "African" culture); I think much of this is conflated with poverty. Throughout the world, poorer people have more children and as wealth increases, birth rate tends to plummet. I think much of the emphasis on procreation is a reaction to high infant mortality and a way of rationalizing or at least dealing with this hard fact (see one of my favorite books, Death Without Weeping). Starting from here we began to discuss some of the examples of "traditional beliefs" seen on the wards and really the main thing I (and others) have seen is patients and their relatives wanting to leave the hospital to pursue traditional medicine. And I think this has to do far more with distrust of biomedicine, poor experiences while in the hospital, and cost, than it does any sort of "cultural" belief system. I mean imagine being on a ward that has a 30% death rate. A totally open, communal ward with two people per bed and no doors that allows you to see people die right next to you daily. I think it must create an obvious association between going to the hospital and dying that would without question give me pause to want to go to the hospital when I'm sick. I can completely understand why people wait so long to come and why they are so sick when they get here. Which is obviously a perpetual cycle. We talked a bit about how the complete lack of privacy on the wards can be a bad thing (with the visibility of death but also in terms of their being no concept of anything like HIPAA here) but also how this type of ward set-up can foster a sense of community among patients, whom are able to look out for one another at times. This may be helpful, but I notice a lot more downsides -- infection control (lack there of) and the issue of death, especially for the children on the peds ward (which also has a similarly high death rate). Imagine being exposed to that as a young (and sick) child.

Another thing that immediately struck me on the wards was the constant feeling that we (as health professionals within the Kenyan health system) are putting a price on a life here. Everything here is pay as you go (meaning, go buy your catheter and dialysate and bring it here and pay for your treatment and then we can dialyze you). And because so many people can't afford things, you constantly come up against the problem of "Oh, you need this medicine or this test to survive" and if you can't afford it you basically die. And so your life is worth whatever price that is. Case in point: a 30 something year old woman with CML who needs to have a philadelphia chromosome test in order to be enrolled in a clinical trial that will provide her free imatinib for life (which can essentially be a cure). It costs 24,000 shillings or about 300 dollars. She can't afford it and therefore she cannot get treatment. So in a very real sense, her life is worth less than $300 dollars. This is never something I have had to think about in the states. In fact, I've struggled with sort of the opposite moral conundrum in terms of how much money we spend for patients like 22 week infants in order to keep them alive with incredibly intensive care for months on end (and many of them ultimately don't survive but they cost millions of dollars in the interim). It is just such a stark contrast between the monetary value we directly or indirectly place on different lives in different places that has really hit me hard. It is also one thing to see a patient with end stage lung disease who cannot afford oxygen die in the hospital (his lifespan and quality of life even with home oxygen was poor) but it is another to see a 30 year old woman with a cancer that could expect a long life with this one drug, be discharged with very little time to live because she doesn't have $300 for one test. Sometimes it is frustrating when patients cannot pay for diagnostic tests because you as their provider want to know the pathology so you can give them the best treatment, but its another thing to not even be able to provide treatment.