>All to say, having an advocate that help you with your wishes when you're in a weakened state feels like it is pretty huge.
I think it is effectively, required for most hospital stays. Even a fully capable individual with all that is going on in a hospital would IMO find it really hard to hear every important word, understand every context, and would struggle to make truly informed decisions.
When my son was 6 he was in the hospital for an illness that we still don't entirely understand (thankfully he recovered completely and is doing well). My wife or I were there the entire time. We got updates from the local university, other doctors from other hospitals.
Just updating my wife with all the details was absolutely mind mindbogglingly hard to really convey all the information accurately. When we were there together it was even harder for her to keep up.. in person.
I felt like I had an advantage as in my line of work I do a lot of troubleshooting, so change this, observe that, check this after that, accounting for tradeoffs of making some decisions, and the methodology totally made sense to me. My wife not as much.
I feel like there's a need for a medically trained advocates to really help people with these kinds of things.
The necessity of understanding and aggressively arguing for your medical care is a real shame here in the US and IMO most of the reason why we see worse outcomes for certain minority groups with heart attacks etc not getting sent to specialists at the same rate. My experience is some doctors and staff actively welcome you participating but some don’t and you never know which one it is.
Living outside of the US, advocating for your own care is actually good. When I lived in Asia you generally don’t question what your doctor says, you just do it.
Thats certainly true in my experience in Japan, though there they are usually hyper conscious of doing procedures correctly so I don’t know if it would be better or worse.
Yup, I would echo this strongly. My wife ended up in hospital just before Christmas a couple of years ago, and she’s an extremely quick professional but between the emotional impact and the sheer volume of information she just couldn’t keep up. I did a bit better and kept up with the various prescriptions, test results, dosages, etc. Behind me there was a whole family team processing this — mom a nurse for 20+ years, her best friend an ER nurse for similar, a cousin that was a specialist in a related field, etc. All from 3000km away.
In the end, we lucked out that in the ER the first night we had a wonderful specialist who really took on the primary role in her care going forward, and the “shadow” family team stood down. And this was for a relatively simple issue that within 24 hours was determined not to be life threatening! I have so much more empathy for families in really challenging situations like yours now, just the sheer volume of information..
I think it is effectively, required for most hospital stays. Even a fully capable individual with all that is going on in a hospital would IMO find it really hard to hear every important word, understand every context, and would struggle to make truly informed decisions.
When my son was 6 he was in the hospital for an illness that we still don't entirely understand (thankfully he recovered completely and is doing well). My wife or I were there the entire time. We got updates from the local university, other doctors from other hospitals.
Just updating my wife with all the details was absolutely mind mindbogglingly hard to really convey all the information accurately. When we were there together it was even harder for her to keep up.. in person.
I felt like I had an advantage as in my line of work I do a lot of troubleshooting, so change this, observe that, check this after that, accounting for tradeoffs of making some decisions, and the methodology totally made sense to me. My wife not as much.
I feel like there's a need for a medically trained advocates to really help people with these kinds of things.