The Role of the ED in Managing Chronic Illness

Hello, my zebras and spoonies How are you today, I’m super glad that you’re here hanging out with me. So today I want to talk about the ED: its role and relationship with those of us that have chronic illness.

I frequently hear people talking about their experiences in the ED. There is a distinct dissatisfaction amongst the chronic illness community in the way that the ED handles our cases. I wanted to talk about some of the reasons that this happens, and maybe talk about what we as patients could be doing to maybe improve that relationship and to maybe avoid the ED.

So the first thing to keep in mind is that the ED is for acute care. It is designed to treat acute illness: trauma, crisis. The focus of the ED is to make sure that you are not going to die. The problem with chronic illness, is that it’s forever, and most of the time it doesn’t put us in a position that it’s going to kill us. And that means, that largely speaking, it’s not of interest or of note to the ED as its focus isn’t on helping us manage or better control those symptoms. They really aren’t focused on making sure that our flares aren’t out of control, because that’s not what they do, they are focused on making sure that when we have an exacerbation of our chronic illness, it won’t cause us to die.

So I think that that leads into one of the major issues. The goals of the ED, and the goals of the patient, when you go to the ED, often don’t align. That this is why there is a disconnect, and a dissatisfaction, between the patient with chronic illness and the ED. So, again, ED is focused on making sure you don’t die in that crisis and making sure that you’re stable so that you can go and get care with the people that normally take care of you. When we come to the ED as patients, we’re looking for multiple things. We could be coming there in a crisis. But we could be looking for them to help us control a flare or we’re looking at them to help us answer a question about a new troubling symptom.

Oftentimes, the workup that they do in the end is going to be very focused on answering one question, “is the symptom that you’re having, presenting a problem that is acute and life threatening?” Once they have established that you are probably not in any kind of immediate danger, then that answer really isn’t relevant to their care anymore. Once they have established that you are stable, and that your symptoms don’t represent an acute life threatening situation, they can then refer you back to your outpatient team that knows you better and they can do a more complete detailed workup to help you find the answer of what’s going on with that symptom.

This can be very frustrating as a patient because we leave there saying, “Well, they didn’t really do anything.” Well they did, they made sure that you weren’t in crisis and they made sure that you were stable and safe. That’s important. Okay, it’s important to make sure that the symptoms that you’re having can wait. When you’re waiting for an MRI for three months, it’s important to make sure that this symptom that you’re having is stable and not urgent and can wait for that three months, appointment and follow up. The outpatient process is very protracted and takes a very long period of time, but it can go through all of the steps and it can go through all the possibilities of what could be going on. There is a higher possibility of finding the answer with the outpatient process.

So while the ED is much more immediate and you get your answers right now. Their focus is not going to be on really finding your answer. Their focus is going to be on solving the one question: “Are you critical?” And if the answer is no. There going to refer you back to outpatient, even if they don’t have an answer for you. So part of that challenge as a chronic illness patient is going to a doctor and feeling like you haven’t been heard, because they haven’t really answered the question that you came to them with. You want to know why you’re having pain, well if they tell you that you’re not in acute case and they refer you back to outpatient to follow up to figure out why you’re having pain it’s very frustrating and it can feel very dismissive. But take heart in that that means that you’re stable and that means that you’re not an acute case and that it means that you’re okay. The downside is that also means that you’re going to continue to be in pain and that you’re still going to be in this crappy situation of symptom flare, and that you’re not going to have an immediate solution for making your situation better for the management of the problem.

What makes all of this worse is how dysfunctional the outpatient process is. We all know how much that process sucks and we know how often that outpatient process doesn’t lead to actual answers and how often that process actually just leads to a different type of frustration.

Another piece that we need to keep in mind about the ED is that they don’t have established relationships with us. They don’t have our medical chart. They don’t have our whole history. They don’t have this big knowledge base of who we are and the complexities of our chronic illnesses. So when you go to your PCP, ideally, they know your whole history. They have your chart, your background, ,they’ve done a huge workup on you in the beginning, ,they’ve done an introductory appointment with you that lasted at least half an hour and did a good physical and did a good long interview with you to get to know you as a patient and looked at who you are and what your history is, and that arms them in a way that an ED doctor can never be armed.

When you go into a patient’s care without really knowing anything about that patient, You really have to guess based on statistics. What is this symptom statistically most likely telling me that it’s going to be? And, again, they’re only looking at what are the critical issues that this symptom could be telling me. So if you go into the ED with abdominal pain, the reality is that abdominal pain could be about a billion different medical problems. It’s one of the most difficult things to diagnostically workup because so many things can cause you to have this very vague symptom of abdominal pain, and some of them have nothing to do with your abdomen, which is just lovely. So the ED doctor is going to be looking at whether or not your symptoms suggest an acute abdomen. Are your symptoms something suggestive of a critical problem and if so they’re going to shunt you into the hospital, admit you, get you into surgery, whatever is needed based on what they figure out is going on. But if your symptoms set does not suggest an acute process. It’s not that they’re saying that it isn’t real. It’s that it’s not urgent, it’s not an emergency based on a life or death question.

As a patient when your pain is seven or an eight or nine, that’s always urgent. There’s a different question in the ED, it’s not about how much you want this problem to be solved. It’s about how likely is this problem going to kill you. So the reality is is that the ED is probably the worst place for us chronic illness folks to get any kind of real treatment. And yet we end up there, a lot, because our treatment team is not always managing us in a really good way so we end up with flares and we end up with strange symptoms that are worrisome, that do need to have that workup to answer the question of is this a an acute problem? So there’s this balance of people with chronic illness, and our relationship with the ED system.

Things that we can do as patients that can help our relationship with the ED? First is that we can articulate our goal with the ED. When we arrive, if we are looking for improved pain management, then we really should be just saying that straight up. Like, if we have a chronic pain condition, and our flare is just out of control, and we really need something to help bring this pain down so that we can get to our next appointment, then that’s the conversation that we need to be having, if we’re there because we need to know why we’re having pain because it’s a different type of pain than we’ve normally had, it’s really important that we communicate that we’re concerned of an acute process and we need to keep in mind that we very likely will not find the solution to our problem in the ED, and in fact the best case scenario is that we don’t find the solution in the ED because if they do find the solution in the ED, it’s probably because it is an acute process that’s life threatening. And that’s not the situation that you want to be in. It would be much better for your health and well being, if they don’t find anything and they don’t see anything urgent and you are stable and they can shunt you back into the outpatient setting. As frustrating as it is as a patient.

We need to make sure that we have realistic expectations when we go to the ED. We need to understand that they are not going to do a full diagnostic work up. They are not going to look at all the possible answers. We need to go to the ED with this perspective that they have in mind.

The best thing that we can do as patients is to avoid going to the ED, and I’m not saying that you shouldn’t go to the ED if you have worrying symptoms that suggest an acute problem because that’s absolutely is what the ED is for. But we need to build our treatment team carefully and wisely and remember that our treatment team work for us and that we are the center piece of that team. And if at any point, a member of our treatment team is not working for us and is not working towards our goal and our agenda we should fire them.

I think too often that we as chronic illness patients forget that we can and we should fire doctors when they aren’t working for us and working towards our goals and our agendas. If we go in to a doctor’s office, and we tell them that what’s most important in managing our disorder is to maintain our ability to walk and they’re focusing on our pain, that’s a problem, or vice versa, if we think the biggest issue of our mobility is disorder is our pain, and they’re focusing on our whether or not we’re maintaining our ability to walk. That’s a problem. And to be clear, neither goal is better than the other, both are worthy goals and both promote a sense of health, well being and improve your quality of life, but they need to be your goals as the patient, not the doctor’s goal, all of your care needs to be patient centered, and the best thing that you can do for your care is to make sure that you were working with doctors who have that philosophy, and who were frequently asking you as a patient, what’s important to you and what matters to you in managing your care and what are your goals, what is it mean to be better to you.

I have POTS. A lot of people do. What does being better look like to you as a POTS patient is going to look different than it does to me as a POTS patient. Is walking a huge priority for you? Or is the nausea and vomiting a bigger issue for you? Is the pain and palpitations, a bigger issue for you or is the dizziness and lightheaded and passing out? All of these symptoms have their own way interfering with quality of life and which ones interfere with your quality of life for more depends on how severe each of those symptoms are and how you place value on different parts of your life. If you are someone who does a desk job, works at home, you might not value the ability to walk as much as somebody who was a competitive runner. And these are not wrong or right answers, these are just different value sets based on individuals who have different qualities of life issues.

We need to remember that we are at the center of our healthcare and we need to make sure that our health care team is helping us work towards our quality of life goals because a cure isn’t achievable, it’s about quality of life, and what is important to our quality of life can only be answered by us as patients. And the best way for us to make sure that we aren’t landing in the ED with symptoms that are overwhelming to us is to make sure that we have a team that is having good dialogue with us and helping us to work towards our individual goals.

Thanks for coming and hanging out with me. I think that’s about all the rambling I have for today on the ED, even though there’s plenty to talk about and unpack there but that’s probably all I’ll touch on about it today. So thanks for visiting and until we see each other again you guys take care of yourselves.

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