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12:42pm April 30, 2013

➸ Trying to find the right words: I'm trying to read stuff by people who work in hospitals.

youneedacat:

Not by the people who sit around snarking about patients on their blogs. But by people who make some actual effort to care. I feel like understanding their motivations and biases is vital to my survival.

Already I’m seeing stuff indicating that once you get a feeding tube, a…

I’ll try if I can find all of them again. One book I’m reading right now that gives a lot of insight into the good and the bad, is called When Night Is Day. The author is an ICU nurse and seems like he’s trying to be a decent human being, but (and this is the part that interests me the most) you’ll occasionally see him slip into serious weirdness about some aspect of disability. Like there was this weird remark about how everyone hates working with quads because of the clicking noises they make with their mouths to call the nurse. Or how once someone has a feeding tube and a trach their life is pretty much over, something along those lines.

It makes me wonder what kind of world they live in. Because I live in a world where feeding tubes and trachs and stuff are pretty normal, and they mean your life gets to continue, rather than that your life is over. The guy is also pretty blunt about nurses pressuring people into a DNR at times. Which, to me, that should be up to the patient and the family, and nobody should be pressured either way. Even if the decision goes against the values of the medical professionals. Whatever those values are. Because medical professionals have very different life experiences than patients, and their assessment of our quality of life is always different than our own assessment, and it’s just messed up to pressure people