Twenty things I've learned about the ED as a Chronic Pain Patient's Advocate

I've been spending a good bit of time as a patient advocate for a soon-to-be family member over the last month (and prior).  There were 7 ED visits, 2 ambulance rides and 3 911 calls due to untreated pain in the month of November.  It took 3 ED visits to get a diagnosis for their acute pain (Endometriosis), and some forward motion toward treatment, and another 4 since then while waiting for follow-up visits (see The Patient is Waiting ... in Constant Pain).  We've been in 2 hospitals, and 9 ED beds, 15% of the beds in the local ED.  I almost want to start carving initials.

Here's the thing, for certain conditions causing acute, level 9 and above pain, it's hard to get a diagnosis, and difficult to get consistent treatment.  Having an advocate has been crucial to making any sort of progress. When a patient is in crippling pain, it's damn near impossible for them to have an intelligent discussion about what is going on. When, as a result of ongoing chronic pain, other issues arise such as anxiety or depression, it's damn near impossible for them to get respect as a patient. Finally, when one of your diagnosis is "questionable" (e.g., Fibromyalgia) in the mind of the doctor (even though as an ED physician they are not the specialist who provided that diagnosis), it's challenging to even get good treatment (see It's not real).

What I learned in November:

1. Be aware that if you show up on a weekend during or after any holiday, life is going to have some extra suckitude in it.  These are busy times and this is "high season" in the ED.  If you can, call ahead, better yet, have a doctor do it. 
2. Coming in by ambulance will get the patient into an ED room immediately, but they may be moved later (many EDs reserve specific rooms for ambulance arrivals).  
3. Treatment for pain CAN start in the ambulance if the ambulance is appropriately staffed and willing.  My local ambulance staff are fantastic (but I also live in a town where everyone knows everyone else), others are probably good but don't know us. Our local guys called the nearby paramedics from one town over to meet them en route, and having relief start in the Ambulance is huge!  
4. If the patient isn't dying on the table, be prepared to wait with them ... in acute pain, for some time.  Remember that the ED doc's purpose is first to stabilize you, if you are in pain but not obviously dying, and your heart rate and blood pressure aren't super critical, you are probably at a level of stable that means you won't get as much attention as you'd like.
5. When the patient is in pain, don't be afraid to let them cry or make noise, and to keep the door open. They'll get attention faster.
6. Wait obviously, ask for attention gently, be aware that the folks you are working with are probably crazy busy, and will work better with you if you can be gentle (if insistent) with them.  
7. If you have a specific need, ask for it (from the right person).  A pillow, water, a straw can be gotten by just about anyone, but the doctor is the worst person to ask these for.  Turning the monitor alert off requires someone trained to do that (doctor or nurse usually).
8. If the monitor is beeping but nobody is responding, press the call button. It's faster than asking someone.  If there's a problem with over-alerting on the monitor, get them to address it.  Monitor beeps are purposefully attention getting, which can increase patient agitation -- not a good thing for a patient in pain.
9. Come in with a clinical, rather than psychiatric reason for visit.
10. Know the lingo. The more you speak "medical", the better they listen.
11. Talk about what your expectation for the visit are, and get answers about what the doctor's expectations are.  Ask for times, let them know you are seeking approximate answers so that you know what to expect, rather than precise answers, and that you know they are busy and that stuff happens.
12. You are rolling the dice on providers to be seen.  If you have a clue about what kind of provider, or know a name of someone in the hospital you have seen before, use it, ask to see them if they are available. When the shift changes, the attending doctor and plan may change too, be prepared for that.
13. Have the medical proxy paperwork in your hands. A power of attorney is better than a medical proxy form if it allows you to take more charge (Most proxy forms address "patient is unable", but a PoA can simply designate you with certain authority).  Introduce yourself to staff by your relationship, both personal and legal to the patient.  Use the personal first, but place some emphasis on the legal authority if you have it.
14. Keep track of the patient records, and have them on hand, electronically if at all possible.  We use MyChart extensively because it is available through all of our providers.  If you (or the patient) can state dates for relevant events, their medications including dose, and all of their conditions and allergies, you'll get more regard from the staff.
15. If you have a choice of hospitals, consider them carefully.  My local regional hospital is beautifully laid out with modern equipment and a new facility, but the care provided by the staff is inconsistent.  On the other hand, our visit to the nearby academic medical center left me quite sad about the state of their physical infrastructure, but the one visit made there was FAST, provided excellent care and pain relief within 90 minutes AND to a degree I hadn't seen in the regional facility.  We were in and out in about 5 hours, which for us was about three times faster than the regional.  From a facilities perspective, I'd rather be in the regional, but from a care perspective, if we have a choice, we'll go back to the academic facility.
16. The ambulance will take you to the nearest hospital, which is NOT necessarily the one you want to go to.  If hospital choice makes a difference, consider your options carefully.  Acute pain is not always life threatening, but when it is, you want to be in the ambulance.
17. If the patient has a wheelchair or other mobility device, bring it with you. It helps to get attention needed, and it can make getting there easier.
18. Keep a bag packed for the visit; we now have a go bag packed.  It includes plenty of water, some form of food for snacks: Oreo cookies are a favorite, but we also include protein bars, pudding in favorite flavors, and Slim Jims. The food is for both you and the patient if they are allowed to eat something. 
19. Include a phone charger in your go bag.  Bring your own soft fuzzy blanket and whatever else will bring you comfort.  Dress in easy to access clothing, bring an extra pair of underwear.
20. As an advocate, know a wide variety of ways to deal with pain.  Distraction helps.  Usually by the time you are headed to the ED, you've already tried everything you know.  Here are some things I've discovered.  Deep breathing is essential. Distraction works: Tell good stories, engage in pleasant and fun conversation, have the patient tell you a favorite story. Use a variety of relaxation techniques -- techniques that have already been practiced several times work better usually. Gentle massage is good.  A warm shower can sometimes help reduce pain.  If the patient is locked in pain, is having muscle spasms only makes it worse.  Do what you can to get them to relax.  

#15 was probably the most important thing I learned in November.