As an outsider to the medical world, there are many things that annoy me about the system. I have no real views on triage, medical decisions, etc., I trust in the science and only have strong views when science wants to dictate QoL decisions or sidestep the philosophical issues. But the part where I do have frustrations is in the delivery design.

I’m not the only one who has noticed this, patient advocacy groups rant and rave all the time, and while I have empathy for their concerns, often times I see their complaints and think they’re looney tunes. Yet having experienced ERs for myself, Jacob and Andrea, I am often completely puzzled and frustrated by the complete lack of information that is shared.

I’ve blogged before that I once went to ER with chest pains that I hoped was mere indigestion, but with family history, prudence won out. I sat in the ER for five hours thinking I was having a heart attack before anyone looked at me, while a woman with a bleeding head wound sat near us in triage. Which left me feeling, “Well, if a bleeding HEAD wound doesn’t get looked at sooner, what hope do I have?”. And I’m there with CHEST PAIN. Isn’t that what I’m supposed to do? Well, of course it is. But when I arrived, they did their little heart monitor thing, checked me out, SAW NOTHING, and put me far down the triage list for priority. As they should have, because there was no sign of a heart attack. I don’t have any issues with all of that, it worked as it should.

Except they didn’t tell me. The nurse took the reading, and they don’t diagnose and tell me I’m okay, otherwise I’m likely to leave, something else happens, I die on the street and they get sued. But I’m sitting there for five hours WITH NO INFO about what’s going on, am I having a heart attack or not, etc. With some outside perspective, or some inside baseball knowledge as they say, I know that waiting in an ER is actually a good thing. They’ve triaged me — if they’re not whisking me into the back, I’m not that big a crisis. The longer I wait, the lower my priority was when I came in. Not reassuring, as they could have just forgot about me as far as I know, but still, they rarely lose track of someone, so more likely that I’m not “that serious”. Relax, right?

With Jacob, going to the ER was always a crapshoot. Like many ERs, you get triaged right away, then go to the waiting room, then move to the assessment unit and wait, and then into a room for someone, etc., before you are seen. There’s no info while you’re waiting. It’s just, “We’ll call you.” Which of course is almost the worst thing you can say to someone who’s stressed, other than “calm down” or “relax”. Yet there’s no real solution. There are advocacy groups who argue that you should get a ticket when you come in, like you do in a deli. “Now serving #33.” Except I know that triage doesn’t work that way, even if it doesn’t help me handle it much better.

I could go into an empty ER with four other people. I could be triaged against a 3-level priority system as “Medium”, along with one other person, and say 2 others are “high” and 1 is “low”. In theory, that means I’m “tied for third” in line, right? Except while I’m there, five more patients come in, same ratings. Now there are 4 that are HIGH, which bumps me down to tied for fifth. But even in MEDIUM, there are now four of us. I might not be the most critical of the four, or one of them needs something very specific that only one doctor on that night will handle, or they’ve put in a consult request and that person happens to show up before the other four HIGH are treated.

We’re all in little buckets, but the buckets are not all managed by the same people, and while they might empty bucket 1 first, there is no guarantee which fish from bucket 2 will come out first or when. We’re also sub-triaged within the group. They do tend to group like-patients together and if all four of us have identical issues, sure, the first one is likely to be served first. But if they gave out numbers, then people would get frustrated faster — “hey, why is #47 going in ahead of me just because he’s dying and needs care immediately and I just need stitches?”. Even telling people they are HIGH, MEDIUM or LOW is info none of them have, but it can work against you. “Oh, I’m LOW? I might as well leave.” Except it’s still LOW for an ER, it might be HIGH if you were to go to a clinic, who might just immediately send you to the ER anyway.

I say all this because Andrea is at the hospital this week, which is not supposed to be one of our weeks at the hospital. Of the four week cycle, with W1 being treatment, W2 is recovery from side effects, W3 is starting to feel okay, W4 is more likely to be closer to normal. Except in Andrea’s case, this being week 4, she’s been dealing with fluid in her lungs that has been present for several months. It got worse this month, not better as they hoped, and so after a long weekend of increasingly laboured breathing, she checked with patient care for her treatment on Monday and they said, “Yeah, come on up to Emerg.”. Which she did at about 10:30 Monday morning.

And waited. And waited. And waited. Sometime late in the afternoon, they did an X-ray to discover her fluid has increased in lung 1 (now more serious) and also partly in lung 2. Yay. That explains the breathing alright. Sooo, instead of waiting for the chemo to clear it up, they’d likely drain. So ER talked to hematology, and Pinocchio talked to Gepetto, and Kermit fell in love with Miss Piggy, and 36 HOURS later, they decided to give her a room. Yep, she spent 36h in the ER back area, one night without a real room but finally a bed at least, slept like crap, and then all day today waiting to hear SOMETHING. Apparently, the doctor who does the drainage only comes in Wednesday and Friday, from 5-6 p.m., and there’s no real coordination for them. They come in, drain a bunch of people, if they all get done in an hour, great. If not, see you Friday.

So she’s definitely in until tomorrow night, and if they don’t do it then, either she stays until likely Saturday or she’ll send me to Home Depot to get a nail gun and some tubing or a very long thin siphon.

Andrea and I have a standing joke, don’t even really remember how it started, where we say to each other, “Apparently, breathing is over-rated”. And apparently, that’s true now. Because if you’re not a priority when you’re a CANCER PATIENT in active treatment, what exactly constitutes a priority for a) a bed, b) a room (she got one tonight), and c) someone to drill a hole in your side?

After this week, we might need to revisit the treatment metaphor. The zen / “healing” motif might have dropped, and it is looking more like enduring a battle at this point. She’s a trooper, but if it was me? I’d be climbing the walls at the lack of information about what’s happening, who’s talking to who, and what the options even are that are being discussed / considered. The black hole is terrible for morale, even if there are no obvious solutions. Hopefully, she’ll sleep tonight. We were hoping to take Jacob up to see her tomorrow, but nobody 12 or under. I’m tempted to say he’s 13 but they might turn us away at screening and then we’d be messed up.