[wrs]

I can relate to this experience, having been through it with multiple parents/in-laws. One thing I’ve learned: We are fortunate to be in a city large enough to support a large hospital (actually more than one) with many associated specialists and clinics. If you can stay inside one of these, where people are looking at the same records system and have personal contacts in the various clinics and services, things go so much more smoothly. In other words, try to stay within a single tribe.

Sadly, when you’re discharged to an SNF or rehab, that’s always outside the tribe, and you get the situation described here. Haven’t found a cheat code there yet.

[mrtomservo]

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.

[epiccoleman]

I've found that doctors (at least, good ones) tend to light up when you demonstrate that you're not an idiot.

I don't mean to suggest that "I'm a dum dum" is a bad approach - in fact I think it's great for getting past any cynical defenses that have built up.

But I'll never forget taking my son to the ER and getting to have an actual conversation with a doc. When he was a toddler he would get nasty respiratory infections that had escalated to hospitalizations in the past. When I took him in, he was in reasonably good shape, and initially the doctor just wanted to send us home. But I described his history and said something like "every time he has one of these, we wind up taking him back into the ER at night, where they invariably give him a steroid that clears him right up. Could you just prescribe it to him now, and we'll only use it if it becomes necessary?"

The doc got this big smile and was more than happy to oblige. My guess is that she didn't want to prescribe a steroid for no reason (because they really shouldn't be taken willy nilly), but as soon as I showed her I was, you know, thoughtful and responsible, she was practically falling over herself to help me.

Docs don't want you having to bring your kids to the ER at midnight any more than you do. And for the most part they're in the field for good reasons (especially pediatrics, because you'd have to be insane to do it for the wrong reasons).

[wrs]

Absolutely. Doctors are highly trained professionals who are used to having to translate and simplify, and nowadays even deal with patients who’ve way over-Googled or over-Fox-Newsed and come in stubbornly misinformed, so they may develop a default setting that’s a little reserved and even defensive. Think of working a helpdesk for some system that’s barely understood even by experts, but where all problems are urgent.

If you are able to come across as rational, observant, practical, respectful of their expertise and experience, but also confident that you are the only one seeing the complete picture, 90% of the time this unlocks a much more collaborative interaction. And yes, it’s usually a huge relief to the doctor!