Beyond the ER: Innovative Approaches to Sickle Cell Pain Management
More Programs and Publications Featuring Dr. Titilope Fasipe
In this program:
Sickle cell patients often encounter stigma in managing pain, but what interventions have shown success in improving pain management and frequency of emergency care? Expert Dr. Titilope Fasipe from Texas Children’s discusses common pain issues for sickle cell patients, the stigma of emergency care, and pain management strategies for improved patient care.
Transcript
Interviewer:
Dr. Fasipe, in your research on patients with high care utilization and recurrent pain encounters, what interventions have shown the most promise in improving pain management and reducing the need for frequent emergency care?
Dr. Titilope Fasipe:
So we know that there's a problem with accessing care, and we know that as teenagers and young adults age, they may not get as much preventive care, but you might see that number of hospitalizations start to increase, especially those in pain. And one of the things about pain, sometimes you cannot avoid going to the hospital, but sometimes there were things that could have happened beforehand that may have prevented the pain to begin with. And so I wanted to figure out how do we embrace those strategies? Some of the things I've learned from other researchers and experts include the concept of having a day hospital or an infusion center. A day hospital or an infusion center, depending on your area, and what they call it specifically for sickle cell.
…allows a space where people already know you have sickle cell. There are no questions. There's less of the stigma that is associated with you entering an emergency department. They tend to have a plan in place for sickle cell disease and even sometimes a personalized plan for your pain. And all of that helps you to get pain management quicker. Because pain is suffering, right? Pain is suffering. And so how do you reduce that suffering? Slide 2 Some people have found that an early, like entering the day hospital or infusion center early enough can keep the crisis from kind of escalating to the bad, bad crisis. The one that could last and last and last. And so that is one area that has been shown to help reduce emergency department use and also hospitalizations. I would say be creative about what does it mean to have a pain management plan? When you were young, and when most people with sickle cell disease are young, it is very medication focused sometimes acetaminophen (Tylenol), ibuprofen (Advil), opioid, and then your pain crisis goes away, you go back to your life and then you rinse and repeat.
But as you age, sometimes you have components of chronic pain. Some people experience daily pain or almost daily pain. And if you are just keeping up with just acetaminophen, ibuprofen, and opioids, you're not going to have much of a life. Slide 5 And so looking at chronic pain medications and also tools, everything from programs of mindfulness, which is a way to help you be more present with your experiences therapy, such as a biofeedback and guided imagery, massage, and physical therapy. I think everybody with sickle cell disease usually has a very good heating pad and some of these other things. And then we have our tools that we use that everything from prayer to meditation, those are also part of your pain management strategy. And if you're not aware of those, you might, your suffering component might increase. You notice I didn't say a name of a magic medicine or a fancy pill. I said, we just need infrastructure. We need places for people to go that will get, treat them compassionately. And we need to think more holistically about pain management. And then let's go back to that mentorship question.
So for me one of the things our child life specialist and my team thought of doing was doing like mock scenarios. I don't want to make teenagers frightened of the adult healthcare system, but I don't want to lie to them. And so figuring out a way to model those experiences. And what will you do if you're in this situation when somebody doesn't understand sickle cell disease? How do you advocate for yourself in those situations? How do you develop self-management skills and making sure that somebody who may not be as knowledgeable as your mom, your dad, a caregiver, or your childhood doctor, how are you going to speak up for yourself or find somebody that can speak up for you? In general, addressing I utilization is multiple layers that you have to look at that includes the person and how they cope with pain and what are their solutions. And then the system, how do we give better pain management to people suffering with sickle cell disease pain?
Interviewer:
I love the concept of a day hospital or hospital actually, or sickle cell clinic actually has the day hospital/infusion center in it.
Dr. Titilope Fasipe:
That is so wonderful.
Interviewer:
Yeah, it is. I've been there to visit a few of my friends like Kevin, Kevin Wake. I think everybody knows Kevin. But I've never had to go there. Mark my word, but yesterday I actually had a horrible crisis, and I thought I was going to have to go there, but I, you know, it's so it was horrible that you're in pain, but it's also comforting because you know this nurse and this nurse and you know the nurse practitioner, and they know your name, and they know what helps you what makes you comfortable. And they're going through the day, talking to you, reassuring you that you're okay and checking on you. It's a very, a nice experience to have when you're having one of the worst days of your life. And also I think it's comforting in the way that it's not an ER. Because even if you're used to the ER, it's just a scary place to be you're just scared that you're there. You're nervous, you're anxious. You've already gone over in your head a million times. Do I need to go to the hospital? Should I go? Do I want to go? All of this stuff.
So the ER, regardless of having amazing care, it can be a scary place regardless. So day hospitals are a wonderful alternative that I wish everyone with sickle cell disease had access to.
Dr. Titilope Fasipe:
Amen. I cannot, I mean, we need to like exclamation point everything you said. I, you mentioned, we talked about preventable pain encounters. I don't think people realize it. So let's just address this this myth. People with sickle cell disease, they have real lives that they want to live. So they try to avoid the hospital actually. I think a lot of people have this boogeyman version of sickle cell. Somebody who just wants to be in the hospital, live there and drain resources, and be a drug seeker. But no, we're functional people living their lives. And there is a lot of mental gymnastics when it comes to, should I go to the hospital? Yes. No. Oh gosh. I mean, it's quite excruciating. And that is another type of suffering in of itself. The gymnastics of figuring out, I know I'm not going to be treated properly. Chances are, I may not be treated properly. I just don't know if I could do this. And they try to manage their pain at home. I think home pain management is wonderful if it's effective and I'm very similar to you. I really try to do a lot of my pain management at home until the suffering is too much. And so that looks differently for different people. And I hope that we find better tools for people to be in their comfort zone, be at home if they can, and if they need to go seek care to a higher facility, it's a place that, like you said, nurses that understand doctors that understand.
I, that's a dream of mine that everybody with sickle cell has that ability to experience care that way. Where I live, I don't have that. And I really wish we did.
The information on Diverse Health Hub is provided for educational purposes only, and is in no way intended to diagnose, cure, or treat any medical or other condition. Always seek the expert advice of your healthcare team. To learn more about privacy, read our Privacy Policy.
