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Session II: Intractable Pain, Opioid Failure and t ...
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Next slide. And these are the disclosures from our presenters, so all disclosures have been reviewed and all relevant financial relationships have been mitigated. Next slide, please. These are accreditation statements, so today we are able to provide CMEs, nursing credits, and also other professional continuing education credits. And next slide, please. And if you are interested in claiming your continuing education credits, please keep in mind that completion of the evaluation is required to receive credit, and this will be done through our learning management system through PCSS, so you will have to create an account if you do not have one already, and then you can click and follow the instructions accordingly. This will also be emailed to all participants who are in the training today, so no need to write this down, and I will also remind folks at the end of the training. Next slide, please. Okay. And now I will pass it along to our presenters. Good morning, everyone. So thank you all for joining. My name is Christine Tekel-Heimanot. I'm a nurse practitioner at UC Davis taking care of adults with sickle cell disease. So I'll start this out with a little lighter note and a little clip from one of my favorite movies. All right, this is from The Princess Bride, all right? So this is going to show a little scene where this woman has lost the love of her life. He went to sea and the dread pirate Roberts captured him. She heard he died. She is grieving and in pain. Christine, we can't hear it. Okay, how do we. How do we bring it in? I think when you share your screen, there's like a little button that says share audio. Christine, if it doesn't go through, I know this verbatim, it's one of my favorite movies too. Oh, you know the story. It's from the Dread Pyro Roberts side. You can say it. I can't say it, Highness. Anyone that tells you something else is selling you something. Yeah, let me see. I think I saw the share sound button. Share sound, share screen, share sound. OK, there's the share sound button. All right, let's try it again. This is one of my favorite movies. On the high seas, your ship attacked. The dread pirate Roberts never takes prisoners. I can't afford to make exceptions. I mean, once word leaks out that a pirate has gone soft, people begin to disobey you, and then it's not. But work, work, work all the time. You mock my pain. Life is pain, Highness. Anyone who says differently is selling something. All right. We can agree with that? All right. So the old way of thinking, right? The old way of thinking. Okay. The old way of thinking, right? The way that most of us were all trained was, okay, if somebody is in pain, well, then they're in pain and they're suffering. Somebody with sickle cell disease. This is a terminal disease. All right? So what do we do when somebody has a terminal disease? We provide good supportive care, right? We should relieve suffering. And ultimately, that means we provide opioids. We do this stepwise approach, right? We start with a non-opioid and adjuvant. Oh, they still have pain. Come back. Let's give them something like an opioid for mild to moderate pain, like a Tylenol decoding. They come back to clinic. They're still in pain. Okay. Well, let's give you some of the harder stuff. Let's give you some Percocet. We'll give you some MS content. And we just thought, well, as long as we minimize OME to under 200, then chronic opioid therapy can continue just fine, right? But we've learned since then that that's not the way it is, right? So we really realized tender loving care plus opioids does not necessarily mean good palliative care. We have some other things that we need to think about. So after I cared for people with sickle cell disease for about five years, I started really asking myself these questions. Are opioids causing deaths? Is this causing addiction? Is this causing more pain? Are the meds the very care I'm providing? Is this isolating them, diminishing their self-worth, impeding their ability to be integrated into their community? What if the very care I'm providing are the cause of all of the above? What if the opioids are like shackles holding them back? So I'll start up with a case study. And this is one of the reasons that I was asking all these questions, right? So case study number one, I have a 25-year-old male with hemoglobin SS. He's taking hydroxyurea as disease modifying therapy, and he refuses all further disease modifying therapy options. He has a history of schizoaffective disorder that was diagnosed in his teens, frequent vaso-occlusive episodes, and acute care utilization for IV opioids in adulthood. He sometimes hints to the treating nurse during IV pain management. You don't want to know what I did last night. I had too much fun. In the clinic with me, he doesn't tell me this. He tells me instead, I have this intractable pain, Christine. My pain is so bad, I feel like killing myself. And I think I'm going to kill myself by the end of this year because my pain is so bad. So he comes to me in September. So I have three months. I realized I needed some critical partnerships. I realized I was in over my head. So I reached out and built a lot of partnerships throughout UC Davis and nationally, built partnerships with the UC Davis Pain Team, of whom Ravi Prasad is a part of, the UC Davis Addiction Medicine Team, the Johns Hopkins University Echo, Pat Carroll, Sophie Lanscron, Mandy David, Virginia Commonwealth University with Wally Smith. These are all the big names in sickle cell, University of Alabama at Birmingham. My clinic nurse and I, we started rounding on anybody who was admitted weekly. And then we also launched a weekly wraparound clinic for our patients who had high medical and high social needs. And I really sought first to understand my patients than just to be understood myself. I started asking them, I started talking to them, hey, I'm sorry you're here. What would you rather be doing? How are you feeling? Where's the pain? What can I do to help you feel better? So every week in the hospital, myself and the nurse would spend about three hours, visit between the four to eight patients we had admitted. And this is what I heard. I'm in so much pain, I want to kill myself. I can't take this much longer. I'm suffering, but I'm scared to take more. Oxycodone lasts two and a half hours. I spend the next one and a half hours waiting in really bad pain. I really want to do fill in the blank, but I can't because of the pain. I'm worried I'll die, like fill in the blank, my friend, my cousin, my mom. This hospital bed is a safe place to be. I'm trying to get better. And then he goes back to playing video games. I also heard this fatalistic thinking, and this was pretty frequent. My pain has been just like this, unrelenting, repetitive, and unchanging since as far as I can remember. It's been like this since before I could walk, and my parents had to carry me into the hospital in their arms. You think there's a solution to my pain that will get me out of the hospital? No one, no one can find a solution unless they live with this and experience the same pain I feel. I was going to find a cure. I was going to change the world, but now I can't even stand up without pain. So this is going to be my life. You're dismissed. So I realized that this was more than physical pain that kept my patients in the hospital, right? There's social pain, psychological pain, spiritual pain, and of course, the physical pain. In palliative care, we talk about the four realms of pain. We call it total pain. So all need to be addressed for comprehensive pain management, right? The social includes loss of role and social status, financial concerns, dependency on others. Psychological includes anxiety, fear of suffering, past experience of illness. Spiritual includes anger, anger at fate, anger with God, a loss of faith, not finding meaning, and fear of the unknown. And so you may recall these slides from my first presentation, right? These are our babies who have the dactylitis. And along the way, along this journey, I read this. If anyone thinks he has a simple solution to the problem of suffering, he should hold an infant screaming with pain in his arms and any simple solution will fly out the window. And so this was really a time that I took to humble myself. And I realized there is no simple, simple solution, right? Sometimes despite every bit of evidence-based practice we try, the patient still dies. Sometimes it's too young, in their 20s or 30s, leaving a young child behind. Sometimes all we can do is be with them and bear witness to the pain, find the bright spots in their life and offer support. I took on the posture of, you know, I am the student, the patients and parents are the teachers. And for the most part, I take on this posture of listen, learn, share and repeat. So again, I went back, you know, my weekly rounds, my weekly wraparound clinic. I'm asking the questions, what are the adverse effects you're feeling, dear patient of mine? What do you feel when you receive opioids, you know, other than the pain relief? And they started revealing things, respiratory depression, sedation, itching, depression, withdrawals, anxiety, insomnia, right? These are all the textbook things that we see, but it takes a lot to draw it out of the people and allow them to admit to themselves that they're feeling something bad in the opioids. And then I'd ask them this more probing question, beyond brief analgesic relief, which is, you know, a few hours, are these opioids actually helping you function better over the days and weeks afterwards? And if not, then we'd have to declare this is opioid failure. If you're not functioning better, the opioids are failing you, right? It's not working. All right, so declare opioid failure. How do we do this? Well, these are some sample things that we say. All right, we say we're at an oral morphine equivalent of 400 and you're not meeting your goals. And we, I mean, our multidisciplinary dream team, I have my nurse, my social worker, my community health worker, my physician, myself, we are all on the same team. We've all agreed ahead of time before a clinic visit or before we go in on our rounds that we've assessed everything and this patient is suffering from opioid failure. And so we all say this, you know, these opioids are failing you. If it was going to work, it would have worked at an oral morphine equivalent of 90. And then there's something that can provide superior pain relief, but it can be tricky to get there. Do you wanna try it? And our multidisciplinary team all needs to be saying the same thing. And if you're able to build these roads, you know, build this institutional dream team or, you know, this network around you where you have the pain MD, the pain psychologist, the pain pharmacist, addiction medicine, everybody has the same message for the patient, right? All right, so opioid failure, is that even an accepted term? This was a pretty common question I heard at my institution. So there's this groundbreaking article published in the American Journal of Hematology in 2022. If you haven't read it yet, I encourage you to read it. And they define opioid failure here. As transition to buprenorphine buprenorphine was recommended for patients when the IDT team has reached consensus that full agonist opioid therapy has failed. And it's defined as, this includes continued frequent acute pain visits despite attempts at maximal disease modifying therapy, inadequate pain control, despite use of chronic opioid therapy for a long period or at high doses, or being unable to complete a planned wean of full agonist opioids without intolerable withdrawal symptoms. So those are the three, the three defining characteristics right there, opioid failure defined. All right, let's get back to our case study. So back to my patient, talking with him, right? You're already on OxyContin 80 three times a day, dilaudid eight milligrams as needed throughout the day. And IV dilaudid one and a half milligrams every 30 minutes and it's still not working. These are whopping doses. These are huge doses. I believe you're in pain and I believe that this is not working for you well enough. All right, so there's something that can provide superior pain relief. Do you wanna try? I talked about the bup, I explained how to get there. It does require a taper of these full agonist opioids that are described here. Patient's response, yes, that sounds good, but no, I'm not going to do it. If you lower my doses, I can't live with the pain. I plan to go out in glory with the new year. So what else do we have to, what else do we have? I learned opioid withdrawal causes pain, right? So end of dose withdrawal pain. That means when my Oxycodone tablet, that like, you know, that great 30 milligram Oxycodone tablet, when it hits the end of dose, that four hour mark, you get this withdrawal pain and it can cause skeletal and muscular pain that is indistinguishable from crisis pain. When patients make the switch from the full agonist opioids to buprenorphine, which is a partial agonist opioids, some can tell me the difference immediately and begin to describe withdrawal pain that they used to have, but they don't have anymore with buprenorphine. So I want to make a point here because my prior patient was in his mid-twenties. I want to make a point, brain development continues into the mid-twenties and therefore efforts to delay substance use and opioid use disorder are very critical, right? So prevention of opioid use disorder for youth starts by addressing alcohol, cannabis, tobacco, and mental health. And I also want to make the point that when our patients are suffering from a substance use disorder and opioid use disorder, these are treatable chronic brain disorders, right? So I had to learn a lot about these over these last few years that I was not trained about in my background of gerontology and palliative care. I learned more about cocaine, meth, fentanyl, heroin, benzos, right? All right, so back to our case study. Within a one month time span, I started running some urine drug screens on him. Cocaine was found in his random urine drug screen. Started talking more with my inpatient group and there was a report of witness diverting and selling by one of our inpatient staff members. The staff member witnessed my patient buying illicit substances or selling. Cash was exchanged. And then I started noticing my patient had substantial over sedation and respiratory depression when in the hospital to the point where I would get to him and count his breaths and it would be like at seven and I'd have to shake him awake and he would just be completely zonked. So here we go. He truly has mental illness. So again, early identification, diagnosis, and treatment of mental health disorders will decrease substance use disorder and opioid use disorder. My patient was clearly suffering from depression and anxiety. There was the stigma of antidepressants. He didn't wanna take them. And in some cultures, they equate depressed as suicidal or crazy. Now he was suicidal, but he wouldn't quite admit to me that he was very depressed because he still had things to live for. He loved his music. He loved playing basketball. He had friends. So he wouldn't quite commit to some of the meds. And so I had to get to him again with some of the life truths that are well demonstrated here in this scene. Today you and tomorrow you aren't the same person. If you're tired of what today you is doing, get an accounting fundamental certificate from WGU School of Business and get a whole new tomorrow you in just six months. Enroll today at WGU. All right, so this is, let me set up the scene. So this is Inigo Montoya. He brings a dead Wesley to Miracle Max to heal. Miracle Max examines Wesley. And Inigo states that Wesley is dead. He can't talk. Kind of like how a lot of my patients will tell me I'm dead already. Look who knows so much, huh? Well, it just so happens that your friend here is only mostly dead. There's a big difference between mostly dead and all dead. Please open his mouth. Now, mostly dead, he's slightly alive. Now, all dead, well, with all dead, there's usually only one thing that you can do. What's that? Go through his clothes and look for loose change. Okay. Hey, hello in there. Hey, what's so important? What you got here that's worth living for? True love. True love, you heard him? You could not ask for a more noble cause than that. Sammy. All right. So there's a big difference between mostly dead and all dead. Mostly dead is slightly alive. What lettuce and tomato sandwich? All right, right? So back to this big question with my patients. What's so important? What you got here that's worth living for? Right, everybody will have their different motivator. And so we have to use that motivator, right? That's the hook. We identify the problem, opioid failure, and then we recalibrate on shared goals. Whatever that goal, whatever they have, that's worth living for. And so we have to discuss in advance our exit plan. We start talking about opioid use disorder. I start telling them, hey, I know this. I know this. I know this. I start telling them, hey, I know this was all opioids were started with the intent to help you, but people can develop opioid use disorder to these things that I'm prescribing you. Right, so we have to start with the end in mind. Hopefully, if you catch them early on, you've talked about this even before you've started opioids, but if not, there's still time afterwards, right? We start recalibrating, right? And we say, okay, instead of you coming in once every three months, you're gonna have to come in every week to get your prescription. If that doesn't work because they have, they're just having a lot of difficulties. And we say every other week or every month, but we really have to tighten things up. And if they make it to the buprenorphine and they are feeling a lot better, we still have to have a tight, kind of a tight rein on them and still see them every other week or every month. All right, the exit plan. You have to taper that oral morphine equivalent down to under 90. And we go at a rate of five to 10% a month. And this is based off of a Stanford article for a taper of under five, about five to 10% a month, helps people. All right, back to our case study. Safety first. He had that over sedation, that respiratory depression. I immediately tapered his IV and long acting opioids. He was definitely very angry with me. He fired me a few times, but he came back. We discussed the risks and benefits of bup over the next year and a half. I discussed his substance use disorder and urged him to please seek help. He had repeatedly positive cocaine over the next year and a half. And he holds himself hostage to avoid the taper. To the point where he says, well, you're not gonna give me more meds. I'm gonna kill myself. It's, you know, okay, fine. We've made it past January. I'm still, if I'm angry enough, I know where to get a weapon, Christine. And I realized, okay, he's really holding himself hostage. We did a thorough psychosocial assessment with our social worker. And together we agreed on an approach of, I can't make you want to live. This is something you have to choose for yourself. What do you want to live for? It was really a tough love approach. It was really hard for me, I'll admit. I wanted to give in many times, but I had a whole team holding me accountable. So our taper continued. Finally, after a year and a half of repeatedly holding himself hostage, repeatedly firing me, he came in, he was in the hospital. And he finally came to a point where he chose to convert to buprenorphine. And I have to make a point, this cannot ever be forced upon a patient. Okay, it has to be a patient choice. We went through the clinical reasoning for the recommendation for buprenorphine again. I had a thorough risk and benefit discussion, including telling him that I was not going to do it. And including telling him this may not treat your pain completely. All right, but it's worth a shot because it could be better than what you're dealing with right now. We addressed the concerns of stigma because he'd already read buprenorphine is for addiction and he didn't want to be perceived as an addict in the community. And he did it. So this is how we do it. This is my most effective strategy. We hold opioid doses overnight, long acting, short acting, everything. And then we start the buprenorphine after about 12 to 14 hours of holding doses. When the withdrawal symptoms are present, the cows are five. And this is all outlined in that article by Mandy David and Pat Carroll. The opioid doses versus the bup dose is not a linear conversion. So some, we have to start low and then you dose up. Some do well with two milligrams twice a day. Some need eight milligrams four times a day. So the question comes, what do we do when there's this co-occurring substance use disorder? This was something I was stumped by a lot. And I would really strongly encourage you to seek out psychiatric engagement with the substance use disorder clinic. We finally got to a point with this patient who he agreed to abstain from cocaine, but he still felt like he really needed some Percocet along with the buprenorphine. And he felt like the buprenorphine helped him a ton. He said, he said, my pain is just so much better. It would go from like a 10 to a five and I can function this way now. Like I can't believe it, Christine, but this is amazing. But he said, I need some Percocet. And at first I refused because this was all the teaching that I had learned. Everything said, don't, you don't give them full agonist opioids along with the buprenorphine. But he said, you know, Christine, if you're not gonna give me this, I know I can get it on the street. And I realized there's a lot of fentanyl out on the street. And so finally I took this harm reduction approach with him and I thought better that I prescribe the highly addictive substance such as Percocet than the patient obtained street fentanyl. And I also did more of a literature review and I realized that there's a subset of patients who need buprenorphine and a lower dose of opioids. This could be Percocet, Dilaudid, Tramadol, but you know, this is far better than what he used to be taking, which was like an oxycodone 30 all at once or Dilaudid eight milligrams all at once. Tiny, tiny doses now. All right, so this is right back to our case study. The case resolution was he chose the bupe. He finally admitted that it was anxiety and fear that was holding him back. Because he had so much fear, we actually did something different. We did a micro dosing strategy instead of cold turkey. And so the micro dosing strategy is he continued on the medication that he was taking and he continued on the medication and so the micro dosing strategy is he continued on his IV Dilaudid in the hospital and he had his Percocet and then we just went up on the buprenorphine two milligrams one day, four milligrams the next day, six the next day until we got him to eight milligrams twice a day. And his analgesic relief and function were markedly improved. Once he was on buprenorphine, he was able to abstain from cocaine for a sustained period of time for over six months, all the way until he moved up to his family at which point we don't follow him anymore. He moved up to Washington. But yeah, his analgesic relief and his function were just markedly improved and he looked better every day. He looked more rested. And so yeah, just wanted to share that success story. And with that, I will hand this off to Dr. Prasad. Thank You Christine, appreciate that. Are you able to see my sharing? Is it sharing properly? Yes. Okay, excellent. Thank you and it's always nice to, for us we're on the West Coast, so it's always nice to start the day with a little bit of Princess Bride. I think that that's everybody's favorite movie. So I'll just I'll just jump right into the the content because we have a little bit just a little bit of time today, so I'm not going to specifically go over the objectives one by one versus just kind of keep them up here on the screen. But as you recall from part one of our presentation a few weeks back, the primary goal that we have with pain management is to try to help patients learn how to live with their pain, right? And this really requires a true interdisciplinary approach, but when we talk about learn to live with pain, you think about some of the things that Christine just mentioned. Think about that patient in that case. How would they respond if somebody told them, well we want to try to help you learn how to live with your pain? That's a pretty tough thing to ask somebody to do, right? They come into clinic, they're suffering, they're experiencing a lot of discomfort, both physical and emotional, and we say we want to help you learn how to live with your pain. From the patient's perspective, that means you want me to live like this right now? This is how you want me to live? And I would actually argue that no, right now your pain isn't awfully managed. The goal is to try to help you get to a place where it is better managed, but that's still a very tough pill for the patient to swallow. I guess I probably should use a different example, no pun intended with that one. But so how do we try to help patients understand this? And even clinicians sometimes have a hard time grasping what we mean by learning how to live with pain. So this next set of slides is really meant to better illustrate what we mean by learning to live with pain. Let's say that this square represents your life. Let's say you go to a family reunion or you're sitting next to somebody on the plane and they start talking about your life. What are the types of things that we talk about that give our life meaning? What fills our lives? Oftentimes it's friends, family, work, sports, leisure activities, even mundane things, our cooking, our cleaning, our errands, entertainment, movies we watch, such as A Princess Bride, right? All of these different types of things fill our life and these are the things that give us meaning. One day a pain condition sets in, right? And by definition pain always starts as something acute. It always starts as acute until we get or work up and able to better understand what's going on. But as that pain condition transitions from acute to chronic, it starts to radiate out and it starts to have multiple impacts in domains of our lives. We have decreased activity levels. People are unable to go to work, unable to participate in family activities. Oftentimes there's increased emotional distress. We can start to see things like depression, anxiety, anger, frustration, and it may not be clinical depression or anxiety, but even just as we define these words in the dictionary. People can start to have sleep disturbances. The sleep disturbances may be related to the pain. It may be related to the emotional distress. It may be related to the treatments that they're receiving for the pain or emotional distress or a combination thereof. We have increased number of doctor office visits. It's not uncommon for patients when they're describing their typical day to me to indicate that the majority of their days are spent going to medical office visits. Interpersonal conflicts can start to develop and that makes sense as people are pulling away from family activities, work activities, they have more distress, not sleeping well, that they may start to butt heads with the people around them. And as they do less, they can start to become physically deconditioned. They can start to have atrophy of the muscles where any movement can start to hurt as a result of that physical deconditioning. But now you ask somebody who's living with chronic pain such as sickle cell disease about their life and what you hear them talk about is you hear them talk about their pain. You hear them talk about the impact that the pain has on their life. You hear them talk about a new doctor they're gonna see, a new treatment they're gonna try, and they're no longer telling the story of their life. They're telling the story of the pain's life. But it's easy to see how that starts to happen because the pain has overshadowed all those things that give a person meaning in their life. So the goal of pain management, the goal of helping people learn how to live with pain, is to eliminate a lot of that distress that's caused by pain and decentralize the role of pain in a person's life so that they have space for those things that give a meaning. Unfortunately, we can't eradicate the pain altogether. You know sickle cell disease, we already talked about the fact that this is something that we can't eliminate. It can be a progressive disease. So we cannot make this just disappear. But if we can decentralize a role of it in a person's life and address a lot of these forms of distress that come with it, then we can help restore some balance of life and that quality of life for a person. And this is the primary goal that we have. Christine spent a bit of time this morning talking about during her portion where pharmacologic agents can come in. And I'm going to talk more about the role of the psychological behavioral variables. But to do this successfully, to help patients get to where they can have their pain optionally managed, we really have to transition from a purely biomedical perspective that focuses only on the pharmacologic interventions to a biopsychosocial intervention that embraces all of the different components, the psychological, social, and the biological, and those things working together. Different times, the patient's needs are going to be different. They may have more of a need for the biological, physiologic aspects at some given time. Other times, it may be that the psychosocial variables are more critical. But this always needs to be a dynamic process. And we as clinicians need to be constantly aware of how much or how little a patient may need of these at any given time. And again, from the perspective of pain management, that involves this interdisciplinary approach of the medical team working with the rehab and somebody such as myself, a pain psychologist. This doesn't mean that a patient needs to be actively engaged with seeing all of these different clinicians, right? It could be that they've already worked with a psychologist, they have a set of tools, but just reminding them, are you utilizing these tools? They may have already worked with a physical therapist and have a home exercise plan, and it's about incorporating that into their daily lives. And so, you know, I can appreciate particularly in resource-starved areas, you may not have all these clinicians. So it's not, I don't want you to feel that, well, I don't have those clinicians, so I can't offer this to my patient. It's more of, is a patient employing tools that they may have had from previous exposure or even through online services that they can employ and use to fill these needs? So I'm going to quickly talk about what some of the psychological behavioral tools are, just to give you a better idea of what they are, how they fit into a patient's care, and what the evidence is surrounding them. So oftentimes, the treatment that we provide for patients living with pain, even with sickle cell pain, is done in a group-based format. And the reason for that is twofold. Number one is an issue of efficiency. If we're seeing patient after patient after patient that has the same needs, it makes sense to try to work with all of them in a group rather than individual setting, just because you're able to see more people at once. Number two is when people are living with pain, there's a sense of isolation that comes with that. I'm the only person who's dealing with this. Nobody understands what I'm going through. But when you have people in a room full of other individuals who have all different types of pain, be it sickle cell pain, cancer-related pain, multiple sclerosis, things along those lines, they're able to see, okay, I'm not the only person who's dealing with this condition, and there are others in the same boat as myself who are trying to learn how to live with this. And so it breaks that sense of isolation. So it has a clinical benefit as well. Now regardless of what type of a setting you practice in, whether it be academic medical centers such as us, if it's in private practices, work comp clinics, the VA, what we typically see is that the curriculum in these classes follows the same general structure. There may be subtle variances, but generally speaking what we see is there's a general overview of pain. There's a discussion of activity regulation. When you're living with pain, if you do too much, you pay for it. If you do too little, you're paying for it. So helping patients find that fine line between too much and too little. We talk about pain and stress physiology. Why does stress make pain worse? It's not a psychological process, but there are physiological changes that occur with that, and explaining that to patients so that they don't become fearful of disclosing that to clinicians. Teaching them relaxation training, breathing exercises as a means of helping to break that cycle. Going over sleep hygiene. You know, many times when people are living with pain, we mentioned that sleep gets disturbed. Maybe they sleep too much, or difficulty falling asleep, staying asleep, or getting a good night's rest. We help them identify stressors that can trigger pain, flares develop, and apply coping strategies, communication skills development, and planning for the expected flares that we know that are going to come. And given that time is limited, I'm not going to spend as much time as I usually would in discussing some of the specific treatment pathways, but I will just try to give a very broad overview of two of the different things. Where does relaxation training fit in, and what exactly is cognitive behavioral therapy? Because these are words that get tossed around and associated with the behavioral side, but I want to pull the curtain back so you can understand a little bit more about what happens with these things. So real quickly, as human beings, we're all wired pretty much the same. Our brain is always on, and the brain is always processing information around us. One of the things that the brain is responsible for is detecting the presence of threats or stresses in the environment. Whenever the brain detects the presence of a threat or a stress, it activates a sympathetic nervous system. When the sympathetic nervous system is activated, there's a whole host of changes that occur in the body. Heart rate increases, blood pressure increases, muscle tension increases, blood vessels constrict, cortisol gets released, inflammation increases in the body, and there's a host of other changes that occur instantaneously. As soon as the brain detects that a stressor is no longer present, it activates a parasympathetic nervous system, which brings the body right back down to its previous baseline. All of us have felt this before. If you're driving a car and somebody cuts you off in traffic, all of a sudden you tighten your grip on the wheel, you sit up straight, hold your breath, you feel your heart beating a million miles a minute, that's your sympathetic nervous system activating in the face of stress. But as you realize you're a safe distance from that car in front of you, eventually the body calms down, which is a parasympathetic bringing you to normal. Now we all remember this from our schooling as being the fight-or-flight response in the body, and it's there in all of us. We're all wired this way. But the thing is, is when we learn about this fight-or-flight response, it's always taught to us in terms of a life-threatening stressor causing these changes. But the reality is, is that the threshold that the brain uses to trigger the sympathetic activation is much lower than, is this life-threatening or not? The threshold that the brain uses is simply, is this stressful or not? And any time the brain identifies something is stressful, it triggers some degree of sympathetic activation. Now that's important because several aspects of sympathetic activation can worsen pain, specifically sickle pain, constriction of vessels, tightening of muscle groups around the sites of their body where they have pain, inflammation in the body. These things can amplify the pain they're experiencing. So it's not that stress is causing pain, but it interacts with the underlying disease process to amplify pain that people have. So when people are experiencing things like anxiety, depression, well those are emotional stressors which are going to cause some degree of sympathetic drive. If people have a lot of tension in their environment, if they have conflict with those around them, if they're feeling anxious or stressed about their medication, about their disease process, about a pain flare, this is all going to cause a drive of the sympathetic nervous system and those changes are going to amplify their pain. And so it becomes more than just the disease process but now this stress superimposed on top of it that's amplifying the condition. And so if this is true, and it is because Emily told me that I shouldn't lie to you guys today, we should reserve the lies for other talks. So this is a true process. Pain itself is a physical stressor. So that's going to cause activation of the body's nervous system. But that changes associated with the nervous system are going to feed back into the pain. So it creates a vicious cycle that continuously feeds off of itself. But there's more than just that. When people experience pain, they have emotional reactions as well. People may have anxiety, anger, guilt, sadness, but each of these emotions are also stressors. So they also activate the nervous system, but they become additional loops that then feed back into the pain. But this is still just the pain cycle. People have lives outside of pain. They may have relationship stress, financial stress, poor sleep, dietary issues. All of these have emotions associated with them, which can activate the nervous system and become additional things that loop into the pain. Now if we look at this, there's no single drug that's going to break this cycle, right? You might look at this and say, well eradicate the pain and that breaks the cycle. But we've already established that unfortunately we can't erase the pain. It's a chronic condition. So we need to learn how to break this cycle on two sides, right? And doing so can help restore that quality of life. One way of breaking the cycle on this side after the nervous system has already been activated is helping patients learn breathing exercises. And that's where that fits in is when we teach breathing exercises, we're actually trying to help influence the onset of parasympathetic nervous system activity. The body is keyed up. You've got this strong drive of the sympathetic nervous system. And now through regulation of breath, that actually can create a domino effect and help to regulate other aspects of the body's physiology when breathing exercises are taught and done properly. It's not something as simple as just, oh, go breathe somewhere for 10 seconds. But there's a constellation of different things that we teach patients to help them successfully incorporate breathing where they are triggering this parasympathetic response that can help break the cycle on this side. So stress is still going on. They still have their pain, but we're stopping that loop from continuously feeding back in. To break the cycle on the other side, we use cognitive, we look at the cognitive processes. Cognitive processes refers to our thought processes. In cognitive behavioral therapy, we have three primary components. Help patients understand how their thoughts and behaviors can influence pain and their ability to impact this relationship. Teaching them coping strategies. And the last piece, which is an important distinction between cognitive behavioral therapy and just basic health education, is helping patients apply these coping strategies and maintaining these over the course of time. But what exactly is cognitive behavioral therapy? Where do thoughts fit in? Let's human beings, we act as if we're stimulus response creatures. So for example, if somebody has a high level of pain, they may feel depressed, angry, behaviorally. They may take more medications than what they're prescribed. And physiologically, they're going to have a high level of sympathetic nervous system reactivity. Right. And so they come in, they have, they're coming in for an early refill. They see Christine and Christine says, why did you take more than prescribed? Oh, it's because I had a high level of pain. They attribute it to the situation of the pain. Right. But the reality is, it's not the situation that really influences our emotional, physical and behavioral outcomes, but rather it's how we interpret the situation that leads to our emotional, physical and behavioral responses. So somebody has pain and they think to themselves, this is the worst pain possible. I can't live like this. I need to escape this. You know, I was going to cure sickle cell disease and now I'm a prisoner of it. And I'm never going to have the life that I want. If these are the thoughts that a person has, then naturally they're going to feel depressed. Naturally, they're going to feel anxious and angry behaviorally. They are more likely to take more medication because they're going to want that pain to go away physiologically. The thought processes and the pain itself are both stressors. So they're going to have a high level of that sympathetic drive. Those changes are going to worsen the physical pain. As the pain gets worse, thoughts become more polarized, behaviors become more maladaptive, emotional response becomes more negative, and the vicious cycle is born. Now we can't go back and change the situation. We can't change that that person had a pain flare. We can't change that they're in a sickle crisis, right? And we can't necessarily intervene at the level of the behaviors. We can't tell somebody, oh, just stop overtaking your medications. Just stop feeling sad. That's not going to be very effective, right? We could try to do breathing exercises to try and break that cycle. But if somebody's thinking to themselves, this is horrible, this is terrible, I'm never going to escape this, those thoughts are going to undermine the benefit of the attempts to do breathing and it's going to reactivate the nervous system. So the place where we intervene is at the role of the thoughts. And that's the crux of cognitive behavioral therapy. We seek to modify thought processes to achieve healthier emotional, physical, and behavioral outcomes. But this is easier said than done, because our thought processes are automatic. When a person comes into clinic and has overused their medications, they're not telling Christine that the reason why they overused their meds is because of the way they're interpreting the situation of their pain flare, right? They just attribute it to the situation. So our thoughts are automatic. We don't stop and think about how we're going to think about things. The ways that we think about things, the way these automatic thoughts occur, often are rooted in our core perception of ourselves and our role in the world. So it starts from our earliest life experiences. And so if you recall from the presentation I gave last time, I talked about the importance of early life experiences, adverse childhood experiences. Now all of a sudden, things like emotional abuse, physical abuse, all those different things we experience early in life, those start to shape our cognitions, our perceptions of things. Those start to shape the automatic thoughts we have. And even if we later in life understand that, you know what, there's issues with people around me in my upbringing that had challenges and that's why they treated me the way they did, that doesn't mean that you've changed the lenses through which you view the world around you. You still have to change those thought processes. So it can be very difficult to modify the core thoughts that shape our patterns of interpretation. And it can take a lot of work and repetition to accomplish that. And so it's not just that simple of, oh, I've identified the thoughts or I've identified where they came from. But it takes a tremendous amount of work to change those automatic thoughts. And particularly when you think about automatic thoughts that come up in the context of a highly stressful situation like a major pain flare. That's an overwhelming emotional and physical experience. And to intersect those thoughts and modify them is easier said than done. But this is what we do in cognitive behavioral work. But it's not just positive thinking. I cringe internally when I hear people say, oh, we just need to get people to stop thinking negatively and think positively. That's cognitive behavioral work. That is not cognitive behavioral work, right? I don't know what that is, but it's not cognitive behavioral work. I mean, it's a form of changing thoughts, but that's, CBT isn't just positive thinking because there are many things in life that you can't just put a positive spin on. But essentially what we do is we help patients become aware of the core thoughts that drive their interpretation. Sometimes I understand the sources of these beliefs, but ultimately it's really modifying the cognitions to replace the automatic thoughts. And there's a lot more to it, but because time is very limited, I'm just going to very quickly go through the literature support around this. So Linton and Anderson had patients who had back pain or had a work-related injury participate in a CBT-based intervention versus usual treatment alone. And they found that the people who participate in the CBT treatment were less likely to go on long-term disability, had less medical utilization compared to the folks in the treatment as usual group. Now this is an old study, but the reason why I like this study is because they did a follow-up on the patients five years later and had a 97% completion rate. And they found that after five years, the CBT group still had less pain, higher activity, better quality of life compared to the minimal treatment group. Beyond this, there have been studies that look at the cost effectiveness of CBT. With CBT, Gatchell and his colleagues found that patients who participated, who were identified to be at risk for quantification of pain and participate in a CBT intervention, had approximately 41% less cost over the course of the year than patients who participated in usual treatment. And when we're talking about opioid medications, if we're taking people off of opioid medication, and if we're not substituting them on to buprenorphine, but just doing an opioid wean, we need to make sure that we just don't take people off without offering anything to manage their pain. And I don't mean necessarily another drug rotation, but regardless of the efficacy of the medication in terms of objective efficacy, the patient's perception is that that's a tool that they were using to manage their pain. And if we take that away, then there's a good likelihood that the patient's set up for failure. So teaching them the tools to help manage their pain, cognitive behavioral tools, is a nice way of helping patients have another strategy that they can use to rely on to help manage pain, that we don't have to worry about issues like dependence, tolerance, things along those lines with these CBT tools. And there's been multiple studies that have shown that CBT can be effective in helping patients wean off of medications. And then the last study I'll go over is a literacy-adapted CBT intervention that was developed by Beth Thorne and her colleagues. And why I like this study, many reasons I like this study, but particularly her sample, it's a true community sample with people that had pain in more than six sites, more than four pain etiologies, and the pain present for more than 15 years. You know, many studies that you look at that look at the effectiveness of treatment interventions, they'll say that this is a group of patients that had back pain, and they eliminate people that have any pain in other sites or have any psychiatric comorbidities. Now while that may be a very pure research article from a clinical perspective, that's not very helpful because that's not the folks that come through our doors. But Dr. Thorne's patient population is very much a true representation of what we see. Patients participated in usual care CBT or pain education. And what we found that, you know, for pain severity, there wasn't dramatic difference, particularly the six-month follow-up. Now you might say that's not a great endorsement for CBT, but again, our goal isn't to cure the pain, but really looking at functionality. And when we start looking at physical function, we start to see more differences start to emerge with CBT and pain education. And when we look at depression scores, we see much the same. And then lastly, CBT isn't just changing thoughts, but it is associated with neuroplastic changes. There have been studies that have been done that have found that there are changes in the structure and function of different regions in the brain after people have completed courses of cognitive behavioral therapy. But interestingly, these changes don't occur when people do just pain education alone. And so that mechanism of helping people with applying the skills, there's something more that's happening with CBT than just pain education alone. But even though I spent time talking about CBT, and that's one of the most common, and it's kind of the gold standard of what we use, there's a lot of evidence-based psychological treatments for pain, biofeedback, acceptance and commitment therapy, mindfulness-based interventions, emotional awareness and expression therapy, pain reprocessing therapy. All of these are in that psychological realm. All of these have evidence that support their use. And in the initial clinical interview, we determine which one is the most effective for a patient. So psychological interventions are an important component of interdisciplinary care. It shouldn't be the only thing that's used, but it's a piece of the treatment puzzle. There are a lot of evidence-based psychological interventions used to maximize function, improve quality of life, and the selection is patient-specific. And so with that, I've left us a whopping two minutes for questions, but at least we have a couple of minutes for questions. But I thank you very much for your time. If anyone have any questions, please feel free to unmute. Well, we know it's a lot of material to digest. You know, certainly from presentation one, presentation two, you know, feel free to complete the questionnaire. Any comments that you have, Christine and I are happy to hear those. And if there's specific things that you think would be more beneficial to learn about within the things we talked about, feel free to share that in the comments as well. I want to thank both of you. Really good stuff. It's a, I'm in a curious position because I spent 20 plus years working in emergency medicine. So I saw a lot of this. Christine, specifically the patients that came in, and unfortunately we knew they were substance abusers and they come in, we know they're selling their meds. We know they're addicted to opiates. We know they're using illicit drugs and they're coming into the ER expecting us to give them drugs, basically. And it's, you know, it's very tough. And I love hearing your success story because, you know, our thinking would be to not give that person something that is addictive and that they're abusing because you're just in some eyes enabling them. But to have someone actually get the treatment they needed to bounce out of that. And the talk about how stress increases pain, I've heard that many times and I never thought about it physiologically. So opened my eyes today. Thank you. It was a very nice presentation. Christine, I have a question. The patients that you put them on Buick, is it because of the addiction or you're just trying to help them with their pain level as well? Some people, you know, I have had other cases where I took out before time, but there are other people who really think it's because of their pain. It's opioid failures, pain, right? Pain that's not manageable. And so some of them don't have any sort of a loose disorder. Okay. So it's mainly for pain. Okay. Yeah, because there are many people who are just like, they take their dose and they're sitting there for another two hours waiting for their next dose. Okay. How long does your cognitive behavioral therapy session take before you begin to notice that it's beneficial? How many sessions? How do you judge? That's a great question. How many sessions of cognitive behavioral therapy do you see or do people participate in before it's effective? That's very much patient dependent. It's kind of like going to the gym, right? I can go to the gym and I can sign up for sessions with the trainer, but if I don't practice the things that I'm learning or if I'm not doing the other pieces that I need to do, such as regulation of my diet, so on and so forth, I'm not gonna notice much of a change. So it's not so much just the sessions of CBT, but how much work the patient is doing in between the sessions. And so I would say that for a motivated patient who is actively working on these skills between the sessions, usually it would be, you can start to see some benefit as soon as just two to four visits where a patient is starting to say, you know, I noticed my thought process is more, I'm more aware of the things that are influencing, when I'm in a stressful situation. Doesn't mean that they've implemented the changes, but awareness is the first step. But then usually by the time people get to about eight sessions, they're becoming more proficient with starting to catch themselves and make the changes. But really having the automatic thoughts change, that's gonna be where they have to continuously work on those things over the course of time. But ultimately to really kind of see the start of sustainable change, I would probably say around eight visits. Is there anything you can do to sort of motivate them to help, you know, generate a stimulated motivation within individuals? Absolutely. So use of motivational interviewing can be really helpful because for a lot of the patients, they're many times they're very frustrated and tired of hearing clinicians telling them what the clinician thinks is the best thing for the patient to do. They've heard that, they've been there, done that all their lives. And so motivational interviewing, when you tap into the patient's intrinsic motivation, right, you listen to them and hear the things that they want to do, the challenges that they have, but use that to help motivate them to move forward, that can be very effective. But motivational interviewing though, it's not just a technique, really it's an approach to communication that you have to employ over the course of your time with the patient, but that can be a very effective way to help get somebody to be engaged and maintain their involvement. So it's a lot of it may be somewhat dependent on the counselor, I guess the therapist themselves being quite, yeah. Yeah, and then also the team too, you know, if the team, it's important for the team to reinforce the thing. So for example, when they go in to get their medications, if the team reinforces, you know, have you been practicing, have you been doing your home exercise? Have you been practicing the skills you're learning? It's so important that all members of the team reinforce the work that the other team members are doing. And so that also helps as well. Thank you. Any last minute questions before we wrap up? I know we're about five minutes over. If not, I want to thank our presenters today. Thank you so much. This has been incredibly informative and I know has really also added a wealth of knowledge in the ORN. I don't think this is a topic that we've discussed in the past. And please, if everyone can look into the chat, there is the evaluation link. I will also be following up with the slide deck and information for collecting CEs if needed. Thank you so much, everyone. Bye, have a wonderful rest of your day. Thank you, everybody, bye-bye.
Video Summary
The presentation focused on the complexities of managing sickle cell disease, particularly the challenges associated with pain management and opioid use. The session began with disclosures and information on how participants could earn continuing education credits. Christine Tekel-Heimanot, a nurse practitioner, shared her experience in treating patients with sickle cell disease, emphasizing the importance of understanding and addressing total pain, which includes physical, social, psychological, and spiritual aspects. She discussed the traditional use of opioids in managing pain and highlighted the concept of "opioid failure," wherein opioids no longer effectively manage a patient's pain or functional goals.<br /><br />Christine shared a case study of a patient suffering from opioid failure and highlighted the complexities involved, such as the patient's mental health issues and substance misuse. She advocated for a multidisciplinary approach and the use of buprenorphine as an alternative for pain management, which the patient eventually agreed to, showing marked improvement.<br /><br />Dr. Prasad continued by discussing the importance of cognitive-behavioral therapy (CBT) and relaxing strategies in managing pain. He illustrated how stress can exacerbate pain and explained the role of the nervous system in this process. The session concluded with a Q&A, reinforcing the need for an interdisciplinary approach and patient-specific strategies in managing chronic pain effectively.
Keywords
sickle cell disease
pain management
opioid use
opioid failure
multidisciplinary approach
buprenorphine
cognitive-behavioral therapy
total pain
interdisciplinary strategies
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