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Tips for getting proper ER treatment

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Posted 9/11/2013 10:40 AM (GMT 0)
There's nothing any CPer finds more distasteful then having to use the Emergency Room. Rightfully so as we are judged wrongly by many ER staff. To many who do not understand chronic pain we are drug seeking, whining about pain even with all the meds, hypochondriacs,and rarely do we get a fair shake. We get pushed back to non-emergency status and often are the last to be evaluated.

I spent the better part of 25 years on the other side of the desk from patients, like myself. A few discussions between other mods and myself thought it may be helpful if I were to share the do's and dont's of proper ER etiquette and how to be taken seriously.

All Nurses are required in the ER to chart very regularly what's seen, its a tool all emergency room Drs use to grasp the importance of the situation, avoid litigious situations, and becomes a deciding factor in how seriously your taken and how truthful the patient is based on observations.

If every 15 minutes your notes say "patient sitting up using phone, ipad, computer, etc with so and so at bedside, no apparent distress noted." This is a very very common charting procedure.

Or this one, " Spouse sitting in bed with patient, watching TV, laughing, no apparent distress noted."

Patient has numerous visitors at bedside, talking, no apparent distress noted "

Patient sitting up, wife at bedside has brought vending snacks and patient has consumed said snacks of chips, candy, soda after being advised they are NPO for scans. No apparent distress noted at this time.

Patient up walking outside to smoke against hospital policy accompanied by friend. Advised that to leave area is acting against medical advice. No apparent distress noted at this time, Supervisor notified of situation.

These are all types of notes I've written personally and seen a million times over. Its a protection against litigation, a basis for why a Dr didnt render anymore treatment than he did and one of the biggest, most important reasons why people are not taken seriously.

They dont consider the facts that as CPers we are very accustomed to "carrying on " with pain levels of 7 and higher. They dont grasp the concept that living in CP has taught us how to do normal activities within our pain that stop non-cpers in their tracks. We've grown accustomed to pain and learned to not let us effect us in ways that are distracting.

Right or wrong this is the view from that side of the desk. The best thing to do is "play " the part and when using the ER be a patient and not use your acquired CP traits!

It will make your visit more productive and get you taken so much seriously that your visit wont take all night only to be told "I can't give you anything else " like that's the only reason we came, more meds

I hope this helps everyone realize that they are watching and charting and judging your sincerity at all times.
Posted 9/11/2013 3:09 PM (GMT 0)
I don't go to the ER anymore. I've received this treatment before and I'd rather suffer at home then get treated like a drug seeker. As soon as I tell them what meds I'm on is when the judging starts. I'm usually tucked away in some corner rarely seen.

The last time this happened I told the Doctor to discharge me, I'd rather be at home suffering if I'm not being treated at least my wife can care for me. Over an hour later he came back and said your white blood cell count is 20,000 when it should be under 5,000. Come to find out I had colitis from taking too many antibiotics from my surgery and MRSA infection. I wasn't allowed to leave until the level came down. I told him "You just kicked me back here by myself and let me suffer for almost 2 hours for no reason and this is why you don't judge people". I had a bunch of people come apologize to me several times. I was omitted and was there for 5 days. My stay was great due to the ER mishap.

That was a few years ago and haven't been to the ER since.
Posted 9/11/2013 3:51 PM (GMT 0)
A big thank you Vickie for posting this. Hopefully this will help someone out the next time they end up in ER. I have read tons of nurses notes and the words "pt appears to be in no distress" caused that person not to be a high priority to be seen quickly. When they see people doing all the things you listed suddenly their status changes & they are no longer an emergency.

Thanks for posting this valuable piece of info......Susie
Posted 9/11/2013 4:12 PM (GMT 0)
Thank you Vickie, for posting this valuable information.

I think it's also important that as we play their game, (which is what it is, it's their rules, and like it or not, as "correct" or not), every patient walking in (be it to the ER or a Dr's appt), we are all being judged from the moment we walk in and present ourselves.

If there isn't congruity....if we appear to be "feigning" or "malingering"....that will knock us down and out as well. It's important our conduct is consistent, because even if WE do not SEE a doctor for a while, you can bet that doctors, nurses, assistants, and the gate-keepers can all see us.

I'd also like to ask Vickie and others the position on having a list of our meds at the ready. In those cases where many of us are on a long list of meds, part of the anxiety stems from both having this long list, and having our list include psychiatric meds, anxiety meds, narcotic pain meds, muscle relaxers....

The list will be seen and passed around, with our paperwork, long before we meet face to face,--plenty of time for pre-judgments to occur.

For many of us who've had CP for decades especially, when we're on a good roll, I feel it can bite us in the tookus, because even though for that moment that brought us in to the ER, some of us are feeling pretty happy in general because we can remember when before our pain was managed, how bad it was, how bad it can get.

How do we present so as not to appear anxious, or worse yet, defensive once reviewing our med list, they focus in on meds we take pertaining to pain, anxiety, depression.....?

Thank you again for sharing this vital info,...info that lurks inside all of us, and many times is strong enough to cause us to avoid even seeking care BECAUSE of those things.


Merrida
Posted 9/11/2013 4:51 PM (GMT 0)
Merrida when going over my list of meds I just answered their questions as to why I was on this drug or that drug. I keep my explanations as short as I can. I have a pump, so I am never offered anything for pain nor do I ask. My pump is for back pain but these morons that have seen me both out-patient & in-patient think the pump gives relief for my entire body, lol. I have gone in for a broken arm, staph infection in my leg and the most recent was a light heart attack, blood clot in the lung & c diff infection. The best thing is to remain as calm as possible. I am sorry, I just cannot give any real good answers because each situation is different......Susie
Posted 9/11/2013 8:34 PM (GMT 0)
Thank you Vickie so much for posting this info. It is a good reminder that not everyone gets what we deal with on a daily basis to cope. Whenever I am in really bad pain or sick I go "into" myself and close my eyes and concentrate on breathing. Once when I was in the ER I heard a nurse tell my doctor on the phone that I was depressed because I was doing this and that my husband was uncaring because he was sitting in the corner reading. :/ Fortunately my doctor knew exactly what I was doing and was quickly admitted.
Posted 9/11/2013 11:39 PM (GMT 0)
I get the other end of the spectrum. When I walk anywhere, it's obvious *something* is wrong, and then when it's learned that I have Cerebral Palsy, suddenly everyone is hyper sensitive about everything and they often stop listening to me as a person.

I will literally walk out if they try and separate me from my boyfriend for any reason. Because without him present to tell EVERYONE I'm of sound mind....no one will listen to me. I'll get swarmed, strapped down, and tuned out.

I understand that brain damage affects everyone differently and in a lot of cases the patient might NOT be able to make decisions, answer questions, or represent themselves. But that's not the case with ALL patients and each one should be assessed accordingly and treated accordingly.

There's absolutely nothing more terrifying than being in the ER or some place and having everyone treat you as if you're not there, if that makes sense.
Posted 9/11/2013 11:48 PM (GMT 0)
Lexi Rae, that sounds absolutely terrifying. I would be so angry and frustrated. On holiday in Ireland I was admitted to hospital with an ovarian cyst, I was shocked at the reverence with which their doctors are held. to the extent of not being able to ask questions. You are suppose to just sit and listen. That's the closest to your experience I have experienced personally and I ended up feeling so vulnerable and powerless. you need a badge- I am of sound mind!
Best wishes, golitho
Posted 9/11/2013 11:58 PM (GMT 0)
Good Info, Thank you Vickie...But try to avoid ER's in all costs if you can, always ask your Pain Management Doctor which Hospital ER he has Privilages (SP?) at and go to that Hospital's ER if needed.
But even if they do have these ER's listed still does not mean they will be reached by the ER, so your still on your own...
Posted 9/14/2013 6:21 AM (GMT 0)
I too work in an ER, as well, as the rest of our small hospital and the other "red flag" for some healthcare workers happens when a pt asks for a specific med i.e. dilaudid. Eventhough most of us CPers have years of experience with meds and know what works for us it is seen negatively. Last summer I had a migraine first one in 20 years and although knew what might work based on 20 years ago I let them suggest and try something first. Unfortunately the drug seekers make it hard for us CPers.
Posted 9/14/2013 8:05 AM (GMT 0)
Excellent point MtGr.

Definitely a red flag.
Posted 9/15/2013 1:00 AM (GMT 0)
I've had so many bowel obstructions, blood clots in both lungs a few times, had 3 open abdominal surgeries, and too many other "minor" things happen for me to "act" or "look" sick.

Here are my only tips:

1- If you're a female...take all makeup off before you go to the ER. It sounds stupid, but having any makeup on makes it appear that you're feeling fine. That and most of us don't look as good without makeup, so it plays into the "looking sick"

2-I ALWAYS take either my kindle or ipod (or both) to the ER. I tell my nurse I use it as distraction, so please don't think I'm being rude or dismissive. I think it helps for nurses or doctors to be told you use these things as distraction. Knowing you need distraction is a sign that you ARE in pain. I've also learned that if a nurse thinks you're being rude, they're not as nice to you.

4- I disagree with knowing what meds work better/worse, and conveying it to your doctors. Most of the ER doctors by me ask what works for me, and I'm honest that oral meds won't work for this severity of this pain (and I've tried them before coming in), and that dilaudid is the only thing I think will take the pain away. I also know that I have strong reactions to certain meds, so I ask to not be given those meds. Granted, most of the time I go to the ER it's because of an illness or obstruction. I am careful about HOW I ask for pain meds though. Instead of "can I have some dilaudid" saying "could I get something to help with the pain" seems to work better.

That's about all I can think of.

Very good thread!
Posted 9/15/2013 2:01 AM (GMT 0)
After one of my surgeries, forgot which one, I was having a bad time with pain management, and I was still having home visits (SN, PT, OT, HHA) ....that stage before I could manage outpatient PT. I explained to the SN that I was having more pain and didn't feel that it was being managed as well as it had previously.

Hubby was there and heard this entire conversation,....it surprised me as well as pissed me off. I expressed that to the nurse. She said to me, in front of my family, "So, you're asking for more Oxycontin then?" And she's typing furiously on her tablet.

I calmly said to her, "I'm not asking for anything in particular, I don't know what I need,...but I am trying to convey that I need help managing my pain."

She commented, "Well since you're Oxycontin, it appears you're asking for more of it for your pain...."

I repeated (and I swear, I maintained my calm and did my best to relay directly): "I'm not asking for any particular medication,....I'd like to ask for help."

Finally, I had a family member give me the eyes that conveyed, "Knock it off, because if you say that one more time, you're going to be flagged if you haven't been already."

I still do not know what she wrote in the tablet, what she conveyed to whoever she reports to, she was one of three SN's who came to visit me while I had home care for those 3-4 weeks before I could get to outpatient.

So a genuine question, because I know you guys will be frank with me (and I appreciate it, and I want to be educated): What would have been the best way to handle this? What did I do wrong? Why did this happen? And, I thought I was doing this correctly, but evidently that didn't happen, so what can I do to better my chances that this does not happen again?

I am really looking for help in learning how to communicate and not shoot myself in the foot, even though I feel I'm doing the right thing.

Thanks everyone.



Merrida
Posted 9/15/2013 9:54 AM (GMT 0)
Merrida, I'm not sure you could have done anything different and changed the outcome. Nurses aren't provided much training in the addiction /dependance or tolerance areas. Many have preconceived idea's that that to them we're already on a boatload of medication and there's no way we could be in as much pain as we claim. It's not easy to change their minds.

I've found that generally if that particular Nurse hasn't had personal experience with PM they're not going to view your asking in a "good light ". I always just state whether the meds are working or not and discuss any increases or changes with my DR only.

At the hospital here the ER record reflects that I've a history of drug abuse, I've never said that, never been treated at a clinic or rehab so simply because I'm on methadone for PM at some time or another someone admitting me to the ER made an assumption that I was on it for drug abuse. Everytime they ask I tell correct them yet its never reflected differently or omitted from my chart.

Like Char said, its best to avoid the ER if possible and especially if it's for pain only. Even the one time post op I let the pain get away from me and couldn't get it back in control I notified my PM and my Surgeon what I was about to do. They spoke to each other and when I got to the ER I had 2 shots waiting and only saw the Er Dr briefly on the way out to evaluate the shots success.

I will tell you a story about a young Orthopedic Surgeon I had pleasure working with. Huge guy played College football, ruined his knee, finished Med school when pro-ball went out with the knee. Avoided any surgery himself through the injury and was like pulling teeth to get adequate pain meds out of this guy for his patients! Hated calling him! I liked him, thought he was a great surgeon, just didn't like narcotics post op in higher doses. He bit the bullet I guess and expected others to as well.

Came on the floor one night, got report and there he was, post knee replacement by 12 hours. Just as the old saying goes we tend to make maybe not the worst patients but certainly challenging and I knew my night was off to a bad start!

His wife was bedside doing a great job of caring for him, she was his office nurse as well, so it was quiet. Sometime during the late evening he got started. He was in pain, had given him what I could, he had a pump and was wearing it out. His wife looked like she wanted to shoot him, he was raising heck, screaming Med orders at me to give him which I couldn't of course so called his Surgeon not once that night but 4 times! Then finally somewhere near dawn and a boatload of fentenyl later he slept. We had a riot when his surgeon made rounds that morning as everyone knew how conservative he was with meds.

When he returned to work he apologized and never again did we have to go to battle with him over post op pain meds. All his patients had very adequate orders post op.

Until he walked in their shoes he had no idea. Now he's not only a great surgeon, he's the head surgeon for his department and one of the top ranking in the country in his specialty.
Posted 9/16/2013 2:05 AM (GMT 0)
Doctors make the worst patients!! I've known a few doctors that have been the same. Strangely, my surgeon has UC so he knows the pain of an obstruction, but doesn't like to prescribe pain meds unless I have surgery (luckily now I see PM so that's not an issue). I also worked with a GI who was super conservative and really dismissive to patients, even when they had documented diseases. (most GIs are with pain meds) He since had a fall in his bathroom and is (as far as I know) still in rehab and on pain meds. He apparently was a horrible patient in the ER because they were being conservative with pain meds...

I have no problem complaining to a supervisor when I feel like I'm being treated unfairly. I'm not mean about it, but I'll ask a nurse "did I say something or do something that offended you?" I had a very dismissive nurse once that changed her tune once my CT showed that I had an obstruction. She came back in my room and said sorry, and that I really showed no pain. I'm very stoic, and I think she learned from me that we don't always show pain. I've had her as a nurse again and she's been great. It also helps that my Mom has no problem telling the nurses that I've had a lot of obstructions and even she can't tell when I'm in pain. (I think it comes off better from her since I live with her and she can't tell whether I'm having an ok day or a bad day...she has to ask me to know). I normally don't have someone wait with me in the ER, but when it's for chest pain, Mom usually won't leave my side.

I think because I have chronic pain for a number of reasons complicates my situation, so I'm not in the ER for back pain or leg pain (I get through rough bouts at home, or I see my PM or PCP if things are out of control). ERs also can't be too dismissive when you're there for chest pain and have had clots in lungs as I have.
Posted 9/16/2013 3:20 PM (GMT 0)
Hello there, I come in on and off and I had to say something about this as well. I hate the ER. I had pneumonia at the end of July and was totally paranoid to go to the ER. This wasn't walking pneumonia either, it was a very bad, atypical presentation in both lungs. I was petrified to go to the ER,(I'd been seen at the urgent care and was progressively getting worse despite antibiotics.) but finally relented because I simply could not breathe and was exhausted. i was afraid to go into the ER because of the magic word, Oxycontin. I have gone so many times when I've had a severe flare and needed something, ANYTHING besides my normal pain meds to aleviate the pain (You know the point where enough is enough!) and the MINUTE I say Oxycontin, I am treated like total crap. I have gone in crying, shaking, BP elevated and had them treat me like a malingering drug addict. I hate the ER and while the said tips are generally good, if you are on something strong, as I am. You may as well suffer at home. My own personal way to deal is to take a hot bath or shower and a couple benedryl or Zzzquil and go to sleep. (I am not recommending this to anyone, as I am not a doctor.) There have been points when I'd rather die than go into an ER. I have been humiliated enough times and the sad part is, eventually, like the pneumonia, something is going to be serious and I will end up waiting too long, but even to that dramatic conclussion, it still seems better than being treated like a malingering addict.
P.S. I am NOT a drama queen, lol, but this is one subject that just pisses me off.
mad
Posted 9/17/2013 12:50 AM (GMT 0)
I've been very lucky. Before pain management I was in the ER a lot. Once I started PM I was able to almost completely stop having to go to the ER. I am lucky in that most of the time when I have to go it's because of a kidney stone and they are usually pretty good about medicating for those. The only problem I have had if I go to the local hospital(not usual as some of my specialists do not have privileges) is they have a mandatory order if someone comes in with a kidney stone, they get the urine sample by catheter. I have had so many stones, baskets, stents and surgeries, my ureter is shot and spasms. Catheters cause me a lot of pain. The first time they asked for a cath, I thought they were accusing me of being an addict and messing with the urine but they said this was standard procedure with anyone with a stone.

I finally relented and let the nurse try, but it was spasming so hard she couldn't even get a little bit of the cath in. She said she felt really bad and would tell the doc she couldn't do it. So they ended up taking a normal clean catch and no issues. The next time I was in I said NO cath and they didn't like it but went along with it.

Unless I was a 9 with new symptoms or other extenuating circumstances, I would never go to the ER for pain control. It is just not worth the way they make you feel like an addict.

Posted 9/17/2013 1:18 AM (GMT 0)
I basically have to think I'm dying before I'll go to the E.R.I've been twice in my adult life.A heat stroke.Was hospitalized 3 1/2 days.And one morning I thought I was having a heart attack.Was admitted and had a heart cath done.

I've definitely considered it a few times.I just think they would see that I'm a PM patient and would treat me like a drug-seeker.I've been to the point of tears before with medication but I'm either stubborn or stupid with my refusal to ask for help.

Probably both,
Rick
Posted 9/18/2013 11:48 PM (GMT 0)
Thank you so much! This helps give me much more insight into why doctors treat me in the er the way they do....
Posted 9/19/2013 1:55 AM (GMT 0)
Good thread...

I am like those of you that will only go to the ER when it's a life/death situation. Anything that has to do with my chronic pain is not an emergency and would just call my PM if needed and ask him what I could do as far as meds go. As in, allowing me to take a different dosage.

I've been three times in my life. When I was around 10 and hit my head on the cement after flipping off my bike and started throwing up and having a crushing headache so went by ambulance and ended up in ICU for a few days.

Next was during a horrible asthma attack when a teenager and could not get a good breath.

Last time was when I first had an ovarian cyst rupture in my late 20s as the pain is excruciating and they ended up doing surgery and took out my appendix as well:)

My PM has said that if I ever run into a situation that 911 would need to be called, to have someone page him directly and he would contact the hospital immediately to make sure they know what meds I am on and my other health issues to be able to treat accordingly.

I guess I was lucky those times I had to go as I was treated well. Being a patient to me in that situation, is just answering the questions they ask and let them make the determination of the treatment plan. I would never ask for any type of meds. I certainly felt free to ask about anything I had questions on with my treatment as well as I hand them my typed up list of meds I am already on and what medical issues I have. But when I am that bad off to be in the ER, I am barely talking and doing poorly where I am just asking them to find out what is going on.
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