This post is culled from an exchange in a medical group I am a member of. Mr. Srivats has kindly granted my permission to reproduce this gem of a letter. Pay particular attention to the last 3 paragraphs.
As I promised in my previous mail, I am adding to the question of the relation between expertise and the politics of health care based on the progression of the Gentamycin – Co-trimoxazole debate. I would remind those who don’t know me, that I am not a doctor, I have little knowledge about these drugs, or drugs in general, and my intervention is related to precisely how to negotiate expert knowledge and a democratic form of medicine.
The specific case here is the exchange between Drs. Sri and S about the pros and cons of discussing such a complex issue in a public forum. On the one hand, I am able to see entirely the validity of Dr. S’s concern that imprecise knowledge and opinions can result in confusion, especially in a multilayered group like the xx egroup. On the other hand, it is precisely the question of expertise and the need to give direction without causing confusion that runs against the problem of a democratic medicine. Should we prevent confusion? Yes, if possible. Should we discuss the matter openly with a group that doesn’t have expertise in the matter — Yes, certainly. Whether it is the case of medical intervention for babies or nuclear power at Koodankulam (I am taking this comparison because of the expert dimension and impact on populations here too), the answer has to remain positive. How do we resolve this dilemma? Not only at the level of health care professionals, but also at the level of patients and communities.
This is where I feel that the position of the doctor as an educator must be examined. Do we have general discussions with parents and the community about giving injections to new-born children? Or oral medication? They certainly won’t have any expertise but they will know what the baby is actually going through on a 24×7 basis. I also have it on some authority that in the rural areas and perhaps among the poor in general, injections are a sign of a ‘good doctor’. It is therefore likely that they would welcome injections for their children without in any way of knowing about the risks and consequences. But I feel since the risk is theirs — their children’s lives to be precise — they should know, confusing or not. I will stress here that there is no point in romanticizing the people in the neoliberal mode — ‘people know best and they must make an informed consent’ — as we all know from the clinical trials scenario, informed consent is a travesty of the right to know what is being done to your body. Yet, I can’t help feeling a discussion must begin, with a democratic education and consciousness raising practice among committed medical professionals. I hope this doesn’t sound like preaching — it is more an exploration of possible avenues for a critical medical practice.
About toxicity and side effects too. This is a general aspect of medical care in its history — the positive iatrogenic effects of medicine (i.e. not the failures of medicine due to bad practice) but the costs of the successes of medicine in patients lives and health over generations of research, shots in the dark, and development. In the final analysis it simply isn’t enough for the doctor to decide that a particular percentage is below the threshold of significance and that therefore the particular medicine can be treated as safe. How can a democratic medicine begin to function in such a way that people know about the risks they take. And yet, I am aware that the general consensus (and medical science’s opinion) is that such an approach is impossible, but isn’t such a conversation imaginable (at the simplest, individual level, and at a much more sophisticated community level): ‘One in ten thousand babies who are given this medicine die, however, it is also documented that the following benefits do occur to the majority who are given it — do you want to take the risk?” to which the parent replies “No” or “Ok, Inshallah!”
It is perhaps likely that doctors who ask these questions will lose their practice to the confident practitioner who simply goes ahead and gives the injection or the tablet — but that raises another problem. How do we educate people out of this blind faith in the expert? The question is how to make the engagement with the doctor a face to face encounter, rather than one of command and obedience.
Would the members of xx feel it is necessary to pioneer this difficult political practice of a critical democratization of expertise? Not in the sense of making everybody technologically equal, but in the sense of teaching people to think about a decision making process on an issue that has bearing on their infants’ mortality (or any such issue of medical care)?
Anveshi Research Centre for Women’s Studies