An Interview With a Registered Nurse About Treating Chronically Ill Patients

When I first met my sister-in-law Allison in 2012, I was impressed to hear she was a nurse. I always wanted to hear about her job and respected her for working so hard.

After being diagnosed with lupus in 2017, my questions for her became more personal. I've turned to her for advice over the years, and I've always appreciated her perspective on my health conditions.

We've learned a lot from each other about the intricacies of the nurse-patient relationship, and I am excited to share her valuable perspective with other chronically ill people.

How long have you been a nurse?

Since obtaining my registered nurse (RN) license in 2012, I have worked 8 years in the emergency department and 1.5 years as a telephone triage nurse.

What have you learned from treating chronically ill patients?

I have learned that chronically ill patients usually know their bodies well and can offer valuable insight into what they need. For example, a Crohn’s patient could tell me if their abdominal pain felt like a regular flare or something different, and a lupus patient could mention that IV steroids tend to help this chest pain. This helps us know what to add to the usual workup.

I’ve also learned to trust a patient when they tell me which vein works well for an IV. I have to take into account that people's veins change, we might need more blood, and the ER doctor often wants a cat scan which requires an ever-elusive larger needle in the AC (the larger, generally easier to stabilize vein inside your elbow).

So I might have to ask about sticking somewhere different. But I have never regretted putting aside my ego and listening to the patient when they say, "If you can use a butterfly on the back of my forearm, that one seems to work."

Chronically ill patients have been some of the most educated and personable that I've interacted with. I often came away from interactions with these patients with a lot of respect for them. I appreciate how they find a positive outlook and persistently advocate for themselves.

What would you tell a person with lupus who is headed to the ER?

1. Bring a medication list. You can usually find this in a recent visit summary from a doctor’s appointment and mark any changes and hand it to the nurse. You could also write or say the highlights of your medical condition, i.e., "My lupus causes a lot of joint pain, and I take an immunosuppressant.”
2. It’s helpful to distinguish between chronic and acute symptoms. Phrases like "What prompted me to come in today,” “What’s different about this pain from usual," or "This treatment would probably help me right now" clue us into what needs to be focused on.
3. Unfortunately, nurses don’t get much formal education on lupus. Maybe 1 or 2 slides in a lecture. So we see these long names in your medical history like systemic lupus erythematosus, but we aren’t necessarily sure if that is something that was treated 10 years ago or if it’s affecting you every single day. But we do have constant access to great resources. The best nurses may not be familiar with your illness or medications, but they will listen to you, be curious, and then do a little research of their own!

What's the most impactful patient experience you have had?

I remember well one night a patient came in who had lupus. Since someone in my family had it, I knew it could look different in different people. But I felt compassion for her that I would not have felt otherwise.

I asked her, “how does your lupus affect you?” She told me it meant a lot to her to be asked a specific question like that. She explained her usual symptoms and how they related to the current pain she was having. She also asked about my family member and how long they had been diagnosed. It was really cool to be able to connect with my patient in that way.

Do you feel like chronic pain patients get the care they need?

At times, yes. Often, no.

I think we undertreat pain. Things like opioid addiction, illegal drugs, and doctors being held accountable to much stricter rules about prescribing have drastically changed pain management.

When it comes to pain meds, there's only so much we can do. We can only give what’s ordered, and in the ER, that means if the doctor is slow, or in a procedure, or waiting on results, then we are waiting too. Or if we have PRN (as needed) orders, then the meds we can give are based on where you rate your pain on a 0-10 scale.

We have to follow those orders exactly, and the policies we have now don’t allow us to make our own decisions beyond that. But we can still advocate for you. We can check in with you often, keep you informed, communicate with the provider, and treat you with dignity and respect.

What would you say to a patient with lupus or any other chronic illness?

I want to say I’m sorry. I’m sorry you have to deal with this every day. I’m sorry the healthcare system is so broken. I’m sorry, ER wait times are ridiculously long. I’m sorry for all the times you’ve heard, "Go home and follow up with your doctor. You don’t meet the criteria for admission."

I'm sorry you've had to endure nurses and providers dismissing your pain.

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I want to extend my thanks to Allison for taking the time to share her experiences as a nurse, especially when it comes to treating chronically ill patients in the emergency room.

What questions would you ask a nurse?