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Originally Posted by cyrnel
My family is in a difficult situation at a large hospital. Our mother has been on the slow road to recovery from heart surgery since Jan 27. A week ago things were fairly stable and we were handed off to the "floor". Care levels don't hold a candle to intensive care. Nurses aren't as well trained, egos take over for competence, mistakes are made, and people aren't reading the charts consistently.
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first, i'm very sorry to hear about your mother.
before you get hung up on the comparison between icu and floor health care...i just want to point out that they are two very different creatures! in a unit, a nurse generally has 1 or 2 patients. on a floor, it is often anywhere from 6 to 12 patients per nurse (varies a lot by location and hospital of course).
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Our mother is back in afib, vent weaning isn't going well, and we're bouncing from one pulmonoligist and cardiologist to another as hospital shifts change. I know nothing about medicine (engineer by trade) but know something's wrong when one tells us the first cardioversion worked and she was in sinus rythm for a week then the next tells us several attempts were unsuccessful. (!?!) Similar incidents abound.
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without knowing the full story, hard to say what is going on there. is it possible that the first cardioversion did work (as the first cardiologist said) but then she reverted despite their attempts to keep her in sinus (as stated by the next)?
i don't want to imply that you or your family are stupid--so please don't take it that way. but when a loved one is in the hospital, it's difficult to grasp everything that is being said, particularly if you don't really know what they are talking about to begin with.
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Hospital processes seem tuned to shift work between staff almost perfectly so nobody has accountability or a good understanding of the case. Now our alarms have brought in hospital internists ("Hospitalists") who suggest we should be ready for long term outside facilities, and their reasoning is based on conflicting intensivist interpretations. Surreal. Like multiple people telling you the weather by looking at the sky through straws.
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i'm so sorry to hear you are having trouble getting the support and information you need!
dr.s are as stupid as the rest of us. they make mistakes and sometimes, they act like they know what they're talking about even though they don't have a clue. so your concerns over what's going on with your mother are very valid.
have you asked for support at the hospital? if they have pastoral care there, that is where i'd start. they should be able to help you figure out what's happening and serve as an advocate for your mother. if not, ask about speaking with a social worker or someone else who can help you and your family make sense of what is going on. do they have case managers you can speak with? if you feel it is appropriate, do they have an ethics committee you can meet with? your best bet is to just ask what services the hospital has because each one is a little different.
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Pardon the stream of consciousness. This is taxing. I feel strongly that it's time to shop outside the hospital for some type of professional advocate and I'm looking for ideas. Is anyone in the audience experienced with this type of situation such that you could point out ideas? Damn frustrating, and every day provides additional chances for mistakes and a longer rehab road, or worse.
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i'd start with hospital resources first. other than that, does your mother have a good family doctor who could help you out with this? even if her doctor can't help you, they may be able to offer some suggestions or point you in the right direction to other resources.
if you are concerned she's not receiving the attention she needs, look into hiring someone to stay with her. unless you live in a rural area, you most likely have access to agencies that allow you to hire nurses for private duty. or you could ask around, a lot of nurses will pick up this kind of work given the chance (though if you fear there is a hospital mistake, do not hire a nurse from that hospital). find someone with experience in this type of nursing (someone who's only worked at a nursing home isn't going to be as helpful). ask their opinion and have them help you come up with questions. this won't endear you to the hospital staff, but if you feel you need it, by all means do it. but i'll also warn you that these services are not cheap and her insurance prolly won't cover it.
if you really believe mistakes are happening with your mom, you need to educate yourself. ask questions, lots and lots of questions. if the person you ask doesn't explain it in a way you understand, ask them to explain it differently. ask for literature you can read so that you can ask more questions. learn everything you can. and if you still feel something is wrong--start talking to attorneys and see what they have to say.
i'm not an expert and i don't know you or your situation. but i know that i would not accept less than the best standard of care for my loved one. if i had suspicions that mistakes were being made that hurt their chances of recovery, i'd spring into action in a heartbeat.
all that said, people sometimes just don't respond the way we hope to treatments. despite the best efforts of the staff, people die and there really is nothing to be done about it. i have seen families sue hospitals when they had no case, but they just couldn't accept that it wasn't the fault of the staff.
and as ashamed as i am to admit it, i've seen hospitals make mistakes and the cover it up. your very best protection against that is knowledge--knowing everything you can about your mother's situation and what is being done for her, as well as what options are available.
i wish you and your family the absolute best. you have my sympathy.