Annie,
This is a very complex issue and I am not sure there are easy answers.
In general I do not think you can force someone to think and care, you can only force them to do something. You definitely can't force them to think out of the box, or find innovative ways to treat you properly, with all the constraints of managed health care.
Obviously, if they are doing something which is clearly illegal (such as withholding your medical records), you can and should use the legal approach.
I am also not saying that there aren't physicians who are truly negligent, but I think it is only a minority.
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But when you're in a hospital bed and no one is doing enough to help you, it's simply the most powerless feeling ever.
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Much worse than that. I think it is one of the most frightening and humiliating experiences a person can go through. It can leave scars that will take many years to heal.
But, I think that medico-legal practice of medicine only encourages this. It significantly encourages less thinking and a more "by the book"- no risk approach.
Sadly, Protocols in hospitals are not set to the advantage of patients nor the physicians taking care of them. An average ward physician spends less then 10 minutes during the day, next to his patient's bed. (and many times even less ).
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So what do we do when "talking" gets us nowhere? Go somewhere else?
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Yes, I personally think that as hard as it is, this is what we have to do, if despite our efforts we are unable to have a fruitful dialogue with those that are supposed to take care of us. Or if their misconceptions (we can't change) lead to management errors.
As you well know, I have personally done that more than once.
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That's yet another reason why a health directive/will is so important. In case there is a time when we can't defend ourselves while on a vent!
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Unfortunately this can be a two-sided sword. I have seen quite a few physician who translate DNR to "do not treat".
I think what is important to do as a patient is make every effort to find a physician or group of physicians you can trust. Those who are ready to "waste" the time required to get to know you as a person, not a chart or a result of a test. Those who are ready to put the effort and combine their knowledge and experience with yours in order to make your life better and hopefully longer.
I also think, like you, that it is important to learn enough about your illness, so you can become an active partner in its management.