This has been my experience as well. My wife has end-stage kidney disease, and we have found that the system works (for us!) when we stay within our hospital system. We don't travel much, we keep to within a certain radius of the hospital we trust, and we make sure any new specialists are inside or at least connected to the same (Epic) system. That has solved the "no interface" issue and the issues described in the "Traditional life in the ruins of systematicity" segment.
We are also blessed to have a kidney specialist that, as part of this system, has some tenure and traction in this hospital system, and is -- in my opinion -- an incredible doctor and hospitalist who proactively navigates these systems on our behalf. I 100-percent realize that this doctor does not exist everywhere, and we are incredibly fortunate to have him on "our team".
In any setting -- ER/ED, inpatient, outpatient, clinic, urgent care -- when you talk with doctors and nurses, answer their questions, no matter how repetitive. Be kind, and understand that the person you're talking with _now_ has exactly 20 seconds of experience with your case and influence over a very small part of the system.
The phrase that has gotten me farthest is "Hey, I'm a dum dum, but." For example, everyone along the way was ready to tell me why what she had _wasn't_ a seizure, and I wasn't going to argue with them, but what I said instead was "I'm a dum dum, but it really looked like a seizure to me. Her fists clenched, I tried to unclench them but I couldn't. I rolled her onto her side because Seizure Protocol. She said herself she lost control of her muscle movements."
The best thing you can do (like the post author) is be an active, participating advocate for your loved one, the patient: Every. Single. Time.