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I completely agree with the author. T1Ds must take care of themselves. Doctors and nurses suffer from Dunning-Kruger massively. They will quite often be confid

by caseyy 2y ago

I completely agree with the author. T1Ds must take care of themselves. Doctors and nurses suffer from Dunning-Kruger massively. They will quite often be confidently incorrect. I’ve seen this living in large cities in the US and Europe. Or you can read about how medics often make potentially murderous decisions on diabetes treatment — there are plenty of stories. Humility is the cure. I say this as someone who went to medschool myself and I have a lot of respect for medics. The most infuriating thing is when they say that diabetics just die in surgeries, but forget to mention that often the reason is medical negligence. Anyone who has had their T1D loved ones go through general anesthesia surgery knows some of the things doctors tend to suggest, like going off the pump for a number of hours with no insulin replacement. Or demanding significant diet changes just before the anesthesia with no insulin adjustment. One doctor once told a patient I know their blood glucose is okay in the morning, so they don’t need to check before the general anesthesia surgery in the evening — the blood glucose only needs to be checked twice a day. I’m sure the care diagram in that hospital says that, but it’s with the assumption that the patient is conscious and actively managing blood glucose on their own. Another way I agree with the author is about closed loops. Many T1Ds, I believe, cannot have adequate control with the “one basal pattern and set carb ratio boluses” approach. Much less with multiple daily injections. Their daily insulin needs just fluctuate too much for an appointment with the doctor or nurse once or twice a year for dose adjustment. If the patient has any sort of hormonal deregulation day-to-day (which many of us do), it will just not work. My closed-loop total daily dose of insulin fluctuates between 90 and 220 units with very good control. Any sort of “roughly one total daily dose every day” approach will fail spectacularly in this case. Such a patient cannot achieve good control with traditional treatment, in my opinion. Though they sure are shamed a lot by doctors who, once again, Dunning-Kruger their way into thinking that treatment absolutely should work. All in all, closed-loop is leaving many medical teams dumbfounded, some are even afraid of it (and refuse funding or tell parents their treatment is good without closed loops), but it’s a life changer. And a patient with this disease always needs to take it into their own hands because the 30 minutes T1D of training in medschool that I got is absolutely nothing compared to years of first-hand experience patients like myself have. That’s why I don’t blame doctors for being misinformed, but I do blame them quite a bit for not realizing the shortcomings of an education that, once again, generally touches on the subject very little.

nerdponx 2y ago
> The most infuriating thing is when they say that diabetics just die in surgeries, but forget to mention that often the reason is medical negligence. I find that a lot of medical research literature is like this. A couple of "X is associated with increased mortality" papers that make no attempt at a causal analysis is enough to get doctors to recommend against X. As far as I can tell, the organizations that make these recommendations don't want to run the risk that maybe the relationship is causal, and moreover don't know all the mediating/moderating factors and so can't safely recommend something that is associated with harming people even if they realize it's not necessarily causal. The inverse is true for positive outcomes. Y is associated with lower mortality, so we recommend Y, even though we don't understand if it's causal or not. But we do not recommend Z which is closely similar to Y and, if there is a causal connection would share a common causal pathway with the Y benefit, because we have only studied Y and not Z. It's a weird kind of extreme causal reasoning that ironically leads to a kind of abandonment of causal reasoning.
- caseyy 2y ago
  This is definitely at least one contributing factor to the situation. But another one is that many medics sadly refuse to learn from a patient. Even when the patient is an expert in practice. A cure for these kinds of issues in medicine and in software engineering is humility. We must understand our knowledge is incomplete. Our learnings are often the best that circumstances allowed us to learn, but not the best one could learn.

by caseyy 2y ago

nerdponx 2y ago

> The most infuriating thing is when they say that diabetics just die in surgeries, but forget to mention that often the reason is medical negligence. I find that a lot of medical research literature is like this. A couple of "X is associated with increased mortality" papers that make no attempt at a causal analysis is enough to get doctors to recommend against X. As far as I can tell, the organizations that make these recommendations don't want to run the risk that maybe the relationship is causal, and moreover don't know all the mediating/moderating factors and so can't safely recommend something that is associated with harming people even if they realize it's not necessarily causal. The inverse is true for positive outcomes. Y is associated with lower mortality, so we recommend Y, even though we don't understand if it's causal or not. But we do not recommend Z which is closely similar to Y and, if there is a causal connection would share a common causal pathway with the Y benefit, because we have only studied Y and not Z. It's a weird kind of extreme causal reasoning that ironically leads to a kind of abandonment of causal reasoning.

caseyy 2y ago
This is definitely at least one contributing factor to the situation. But another one is that many medics sadly refuse to learn from a patient. Even when the patient is an expert in practice. A cure for these kinds of issues in medicine and in software engineering is humility. We must understand our knowledge is incomplete. Our learnings are often the best that circumstances allowed us to learn, but not the best one could learn.