In 2015, Travis Rieder, a medical bioethicist with Johns Hopkins University's Berman Institute of Bioethics, was involved in a motorcycle accident that crushed his left foot. In the months that followed, he underwent six different surgeries as doctors struggled first to save his foot and then to reconstruct it.
Rieder says that each surgery brought a new wave of pain, sometimes "searing and electrical," other times "fiery and shocking." Doctors tried to mitigate the pain by prescribing large doses of opioids, including morphine, fentanyl, Dilaudid, oxycodone and OxyContin. But when it came time to taper off the drugs, Rieder found it nearly impossible to get good advice from any of the clinicians who had treated him.
"We called everybody, and a bunch of them wouldn't even talk to me," he says. "And this includes the pain management team. They would not speak with me, and the message they sent through a nurse was, 'We prescribe opioids but we don't help with tapering.' "
Rieder likens his experiences trying to get off prescription pain meds to a game of hot potato. "The patient is the potato," he says. "Everybody had a reason to send me to somebody else."
Eventually Rieder was able to wean himself off the drugs, but not before receiving bad advice and going through intense periods of withdrawal. He shares his insights as both a patient and a bioethicist in a new book, In Pain: A Bioethicist's Personal Struggle With Opioids.
On what happened when he tried tapering opioids after an ill-advised consultation with a plastic surgeon, who recommended abruptly reducing his dosage
He didn't know what he was talking about; that wasn't his area of expertise. He just tried to think of something that was reasonable — and he would eventually admit this, so this isn't too much editorializing — but we went home and the next day we dropped the first dose and it immediately sent me into withdrawal. ... It got worse over the first few days, and so we start to get really freaked out, because I feel like I've got the worst flu I've ever had multiplied by some order of magnitude. And I'm thinking, I have an entire month of this to get through. And so [my partner and I] get pretty freaked out.
On why it was so hard to find a doctor to help him taper opioids
I asked myself that question every day, every hour for a very long time. And once I transitioned from being an opioid patient to being an opioid researcher the answer I came to was something like "a lot of doctors don't know, so this is just a knowledge gap." So this is probably the best description of my plastic surgeon. He just had no idea how to do this. And that's understandable, because clinicians — doctors — don't get a lot of pain education in medical school. It's not required — a bunch of them get zero — and, on average, you only get a handful of hours. So there's a knowledge gap for sure.
On being sent to an addiction clinic
We called addiction clinics and they very nicely and very gently said, "Boy, you are not our job. We're dealing with people who might die from a heroin overdose anytime they get turned away. We're triaging here. You just took too many pain meds. You just need your prescriber to get you off them."
On the ways in which money plays a role in opioid use
Opioids are dirt cheap, because a bunch of them have been off patent for decades, and these other sorts of therapies can be really expensive. ... A lot of what I was supposed to do to help that pain was physical therapy. Physical therapy stopped getting coverage by my insurance when I turned over the new year. And I no longer hit my deductible, so it was too expensive. So I stopped. Because I was a relatively new faculty member — I couldn't afford it. And so I keep thinking, well, surely a bunch of other people would also struggle to pay for this.
So there are all of these different methods for handling pain that they could be arrows in the quiver of medicine, but they're hard. They get covered less. They're expensive. And so what do we know about opioids? Well, they're incredibly cheap. Morphine is a couple cents per dose. And they are easy. You give them to the patient, the patient feels better immediately. You give pills to a patient who comes in complaining about pain, they leave happy. So this really led me to investigate this, like, deep system of perverse incentives that have pushed us toward just prescribing opioids instead of doing something more integrative and holistic.
On how opioid dependence is treated as a medical issue, but heroin addiction is treated as a criminal issue
Now we're all very concerned about the opioid epidemic — when there have been people of color dying from heroin disproportionately for a really long time, and we just don't talk about it. And we treated them like criminals. That's a travesty. It's absolutely tragic. It's a stain on our response to drugs in this country. My story is not the only one that matters. Stories that look like mine aren't the only ones that matter. People take drugs for a reason. And whether you started with oxycodone or with heroin, if you were medicating something and it hurt you, and you ended up dying from overdose, your life matters. And we need to just kind of announce that loudly every time we have this conversation.
Lauren Krenzel and Seth Kelley produced and edited this interview for broadcast. Kelley, Bridget Bentz and Deborah Franklin adapted it for the Web.
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. My guest is a medical bioethicist who learned about opioid dependence the hard way. In 2015, Travis Rieder was in a motorcycle accident that crushed his left foot. The accident and the six resulting surgeries left him in extraordinary pain, for which he was given large doses of opioids. The drugs got him through a terrifying period, but after two months, he wanted to taper off the opioids. In spite of the variety of doctors and nurses who treated him, he found it nearly impossible to get good advice about how to taper. The period of withdrawal was awful, but with better advice, it wouldn't have been.
As a patient, he witnessed what he describes as the incoherence of modern pain medicine. His new book "In Pain" draws on his insights as a patient, as well as his subsequent research into pain medicine, to examine the problems and dilemmas surrounding prescription opioids and the larger opioid crisis. Rieder is a research scholar and the director of the Master of Bioethics degree program at the Johns Hopkins Berman Institute of Bioethics.
Travis Rieder, welcome to FRESH AIR. Let's start with the accident that led to your opioid dependence. What happened?
TRAVIS RIEDER: Well, it was Memorial Day weekend of 2015. And I had a lot to celebrate, so I had gotten myself a shiny, new motorcycle. Went out for a ride, which I'm contractually obligated by my mother to say was just a bad idea.
RIEDER: But I went out for a motorcycle ride, and I didn't make it three blocks that morning. I got struck on the left side of the motorcycle by a van who blew a stop sign. And my foot was crushed between the van and the bike. So the result of that accident is that I was put into what's called a limb salvage situation, and so I was at threat of having my left foot amputated.
GROSS: I should say here that you were an experienced motorcycle driver. I didn't - I don't want people to think that this is your first outing on a motorcycle; it wasn't.
RIEDER: No, I appreciate that. I had been riding for about 10 years, so this was a new-to-me bike, but it was my sixth or seventh motorcycle.
GROSS: Yeah. So you've had six surgeries. Just tell us something about what you've been through surgically.
RIEDER: The first five happened in the month after the accident. So those were the limb salvage surgeries. The sixth one wouldn't happen until about seven or eight months later, so at the very end of 2015, and that was to help kind of make the foot a little bit more foot-shaped. But those first five surgeries - basically, the goal was you pull all these shattered bones together and hope that they stitch into new bones to kind of hold the foot together.
And then I had the problem that when the first metatarsal - which is that long bone that attaches your big toe to your ankle - it shattered; it blew a hole out through the bottom inside of my foot, which I know is a little gruesome. But the reason that matters is because that's a real problem, medically. I'd never thought about it before, but, you know, scratches and lacerations and these sorts of wounds, you can stitch closed, but when you lose a big chunk of flesh, that's not what you can do; you have to find a way to plug that hole.
And so the fifth surgery was the big one. It's called a free flap surgery, where they took a lot of tissue from my thighs - they made an incision from my knee to my hip and my thigh - and took muscle, fat, skin, artery to vascularize that tissue and a nerve to - so that I would have some sensation in that tissue. And all of that was transplanted into my foot, to plug that hole, so to speak.
GROSS: So now our listeners can understand the level of pain that you were in and why you were prescribed opioids for that pain. But I want you to actually describe the pain.
RIEDER: Yeah. So there were different pains at all different times. You know, the first night in the hospital was one thing; that was - everything was new and terrifying, and there was a lot of panic kind of built into that pain. I hadn't learned how to differentiate it yet. So that was kind of one sort of pain. After that big fifth surgery, which was a nine-hour surgery - you know, three surgical teams - well, then I had a new, hugely expanded surgical site in my foot, but I also had a second surgical site in my thigh. And so that was just something...
GROSS: Because that's where they took the skin graft from.
RIEDER: Yeah, that's where they took that free flap from. And so then I had this whole other massive surgical site. And then they also clipped out that nerve to do a microsurgical transplant, and nerve pain is something totally different from soft tissue pain or bone pain. So it's searing and electric and sometimes feels kind of fiery and shocking. Yeah, so spread out over these months, there were all different kinds of pain, all unpleasant in their own special little ways.
GROSS: You wanted opioids. You felt this pain was basically unsurvivable. So what were you given and what kind of doses were you given?
RIEDER: I desperately wanted these opioids. So when I'm in the hospital, the most potent medications they get are intravenous; I'm getting them through the IV. And this was sometimes morphine, sometimes fentanyl and then sometimes hydromorphone, or what - the brand name that people are familiar with is Dilaudid, usually. So those I'm getting through IV, you know, every four hours or so.
But in between those, I'm also getting oral opioids, so pills, and those started with immediate-release Oxycodone and then eventually built up into immediate-release Oxycodone, plus I would take OxyContin, which is the extended release version, twice a day. So this kind of builds up slowly over the first six weeks or so as my pain needs grow with more surgeries.
GROSS: So you were on really heavy-duty opioid medication.
RIEDER: Absolutely. And one of the things that I do in the book is I try to make vivid what life on this kind of medication is like because only now in retrospect can I realize how heavily I was desperate to be medicated because consciousness in unmedicated life was just unbearable. And so I didn't want to just take the edge off; I wanted my pain to be low, and to be low usually meant I was kind of slobbering on the bed (laughter), right? You know, I would hallucinate. I'd have kind of mild hallucinations as I lost consciousness.
And I don't remember much. You know, I wrote the book from notes and from my - discussing with my partner, Sadiya, who kind of served as my external check on memory. But thank goodness I started writing in the hospital because I've lost big chunks of my memory from, you know, eight months or so.
GROSS: Did you ever feel like you were high? A lot of people start off on various forms of opioids, including heroin, to experience initially a euphoria and some kind of escape from their head or from their reality. Did you ever get pleasure from the drugs in addition to getting some pain relief?
RIEDER: That is such a hard question for me to answer. And so now I'm corrupted, you know, by four years of research in this topic, but I think my initial answer would have been no, which now strikes me as kind of funny because, of course, it felt really good. But I was so focused on the pain relief, right? So opioids do a couple of things that are really valuable to people. They - they're an analgesic, so they provide pain relief, but then they also provide euphoria, which is this high. And it's through the same mechanism; it's through the dopamine system in the way it interacts in the brain's reward system.
And so only kind of after I thought about this and read about it and really reflected on my experience did I remember and realize how good the drug felt. And it felt good at the time because I was in excruciating pain, and that pain went away, and that's a great reward. But I also, when I tried to think about how to describe it, I remember the warmth and the relaxation. I remember vividly lying on my couch and laying my head back after I'd taken a big dose, just waiting for it to wash over me so that I could feel good for a little while. And so because I was trying to escape a very specific experience - the pain. I don't think about that as something to chase because I'm not in pain anymore. But, boy, I can understand why somebody would chase that if they were looking to escape other sorts of pain in their lives.
GROSS: So at what point did you start to want to wean yourself from the opioids?
RIEDER: Well, for me, some of the experience of being on opioids was pretty unpleasant. So I think a lot of people know that opioids cause constipation. And that was really the only side effect that my clinicians were concerned with. They asked me every day about constipation and about my bowels. And so that was pretty unpleasant. And so, you know, about two months after the accident, I was home. We'd been home for a few weeks. Just this slow, kind of painful recovery. And I was wanting to be done with these medications because they were hard on me physically. And so I was kind of proud of myself that I slowly started extending the time between doses of my immediate-release Oxycodone.
And so instead of taking them every four hours, which, you know, I'd spent weeks watching the clock and popping those pills as soon as possible 'cause I was terrified of the pain - and now I'd say, well, you know, it's not too bad yet. Maybe I'll wait another half-hour. Maybe I'll wait another half-hour. And so I started to extend it to five and sometimes 5 1/2, sometimes six hours between doses. But that wasn't until about two months after the accident.
GROSS: Which of your many doctors did you consult about how to do a serious taper to get off of the opioids?
RIEDER: I wouldn't call any of it a consultation (laughter). You know, you have all of these follow-up appointments with all of these different doctors after this sort of event. And so I went to see the orthopedic trauma surgeon. He's the guy who had pulled the bones in my foot back together hoping to save the foot, right, in the immediate aftermath of the accident. Hadn't seen him in I don't know how long. And he kind of asked me the routine questions. We get to the point of, how many pain meds are you on? We do the math and tell him. And he looks up real seriously and says, that's too much. You've been on these too long. That's a really high dose. It's time to get off them.
But he did not give us a consultation on how to get off them. You know, it was a very, well, that's not my job. You know, I saw you for a week and a half after the accident to pull your foot back together. Who's been prescribing these meds? And we say, well, since we got home, it was the plastic surgeon. He said, OK, go talk to him. So we went and talked to the plastic surgeon. And, you know, by contrast, he was really quite unconcerned. He's like, yeah sure. You know, if you're ready to get off the pills, we should do it. Why don't you just divide your daily dose into four and drop one quarter each week, and then you'll be off the meds in a month?
And so it wasn't very much of a consultation. He was just kind of unconcerned. He was like, yeah, this seems like a reasonable dose. So that's what he told us to do.
GROSS: And you did that?
RIEDER: And we did that. Yeah, which...
GROSS: And what happened?
RIEDER: That was not good. So the upshot of all of this is that he didn't know what he was talking about. That wasn't his area of expertise. You know, he just tried to think of something that was reasonable. And he would eventually admit this. So this isn't too much editorializing. But we went home, and the next day we dropped the first dose. And it immediately sent me into withdrawal because these - especially immediate-release Oxycodone, this has a very short half-life. And so within the first day, you get sick when you drop too aggressive a dose.
So yeah, I went into withdrawal immediately. And it got worse over the first few days, and so we start to get really freaked out because I feel like I've got the worst flu I've ever had, you know, multiplied by some order of magnitude. And I'm thinking I have an entire month of this to get through. And so we get pretty freaked out almost immediately.
GROSS: Well, I want to talk with you more about this, but first we have to take a short break. If you're just joining us, my guest is Travis Rieder. He's the author of the book "In Pain: A Bioethicist's Personal Struggle With Opioids." We'll be back after we take a short break. This is FRESH AIR.
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GROSS: This is FRESH AIR. And if you're just joining us, my guest is Travis Rieder, author of the new book "In Pain: A Bioethicist's Personal Struggle With Opioids." He became dependent after he was in a motorcycle accident that shattered the bones in one foot. He nearly lost that foot. He endured excruciating pain from the accident and from six subsequent surgeries. He uses his personal experience to explain some of the larger medical and bioethical issues surrounding opioid use. He's a research scholar and the director of the master of bioethics degree program at the Johns Hopkins Berman Institute of Bioethics.
You tried to go to other doctors to get better advice about how to taper, and it was really hard to find somebody who would talk to you about this. Why was it so difficult?
RIEDER: I asked myself that question every day, (laughter), every hour, for a very long time. And once I kind of transitioned from being a opioid patient to being an opioid researcher, the answer I came to was something like, a lot of doctors don't know. So this is just a knowledge gap, right? So this is probably the best description of my plastic surgeon. He just had no idea how to do this. And that's understandable because clinicians, doctors, don't get a lot of pain education in medical school. It's not required. A bunch of them get zero. And, you know, on average, they only get a handful of hours.
So there's a knowledge gap, for sure. But we also spent the next couple weeks after I initially got sick from withdrawal calling every doctor we could imagine. And so think about it. I had surgery at three different hospitals. I had five of those surgeries. I had, you know, a dozen or so surgeons, nurse practitioners, PAs, writing these prescriptions. I had a pain management team after that big free flap surgery. We called everybody. And a bunch of them wouldn't even talk to me. And this includes the pain management team. They would not speak with me. And the message they sent through a nurse was, we prescribe opioids, but we don't help with tapering.
And so I don't know if this is best described as a knowledge gap in those cases because this is about them not wanting to deal with me. And so maybe this is best described as stigma. Right? When somebody comes to you in opioid withdrawal, what do they look like? Well, they look like maybe they're struggling with addiction. They look like they're dealing with a drug that is causing havoc in our society. And that's a really scary thing for a physician to take on. So if they have any excuse at all for saying, not it, there's a good reason to take that.
GROSS: Were you supposed to go to, like, a drug clinic?
RIEDER: Well, eventually, that is where we ended up. So, you know, the - my initial prescribers, the doctors who had written prescriptions, said, well, this is out of my league. Go talk to pain medicine. You know, as I said, the pain medicine doctors wouldn't even talk to us. We found another pain clinic where I'd never been seen. But we thought, well, we'd give them a try. And they said the same thing. You know, we prescribe opioids. We don't deal with tapering.
And so finally Sadiya asked them, who does? Like, whose job is this? And the receptionist said, why don't you try addiction medicine? You know, why don't you go to a methadone clinic? Like, those are the people who deal with withdrawal and with tapering and getting people off these medications. So yeah, so the thought was, you know, in this big game of hot potato...
RIEDER: ...Where the patient is the potato, everybody had a reason to send me to somebody else. And when we finally said, well, sure, I'll go to addiction medicine - like, that isn't what I felt like I was dealing with, but sure - we call addiction clinics. And they very nicely and very gently said, boy, you are not our job. We're dealing with people who might die from a heroin overdose, you know, anytime they get turned away. We're triaging here. You just took too many pain meds. Like, you just need your prescriber to get you off them.
GROSS: So what did you do?
RIEDER: So we stuck it out. Every moment in those four weeks was the worst moment of my life. And every week, we had to re-decide, are we going to stick to this plan? We kept calling doctors, including the prescribing physician. And he eventually said, look, this is getting scary. His symptoms are terrible. Why doesn't he go back onto the previous dose? And we would say, what then? He'd say, well, try again later.
GROSS: So the original plan was cutting your meds down by a quarter every week?
RIEDER: Yes, the plan that I've been given by the plastic surgeon to get off the medications in four weeks.
GROSS: What was a better plan, now that you know a lot more?
RIEDER: Oh, great question. Yeah. So - in one of the stranger moments of my life, after I published my first paper on this, the CDC tweeted at me (laughter). But it was this really great moment where somebody at the CDC tweeted and said, this is why we've created a pocket guide for tapering opioids. And there's fairly limited literature on this, but they pulled together what literature there is.
And the key piece of information here is that physicians should basically never taper somebody faster than a 10% dose reduction per week unless there are, you know, extenuating circumstances, unless there's, like, risk to the person. And that's something a physician has to decide. But in general, when a patient is just trying to get off routine opioid therapy, you do a 10% dose reduction per week. And if that's too much, you pause. You give them two weeks, a month to recover between each taper. And sometimes it actually requires a slower taper.
So there - since the CDC pocket guide came out, a new paper has come out, saying, you know what? There's better adherence in long-term outcomes if you go even slower, a 5% dose reduction in the first two or four weeks. And then, at the end of the taper, it gets harder as you get closer to zero. This is kind of the sick joke of tapering, that as you get close to the end, it just gets more excruciating. And so you slow down even more during the final third. So this can be a very long-drawn-out process if you want to do it well.
GROSS: So do you think the problem you had with getting off opioids and finding doctors knew how to prescribe it - they didn't know how to do an effective taper without extreme withdrawal - do you think that was a systemic problem in 2015, and it wasn't just your circumstance? And do you think it's still a systemic problem?
RIEDER: I think in 2015, it was absolutely a structural problem. Basically, as I have now gone around the country and talked to physicians, as I've heard from patients on this issue, I've been told over and over, you know, this is my experience too. You know, what you say, this is what's happened to me.
And physicians have straight up told me, I don't know how long it takes for dependence to form. I've had a lot of physicians say to me, well, look, I don't prescribe more than a month's worth of opioids, so I don't have to worry about this. But here's the secret for any physician who believes that - in a month, you develop dependence. In two weeks, you develop dependence. Now, it's not typically as severe, but you do experience withdrawal symptoms once your brain becomes dependent on these opioids. So this is definitely a systemic problem.
And the question is whether we've kind of made any gains on that, you know? So the CDC put out this pocket guide. There are now other tools being developed that I've worked with folks on a little bit. And I don't know that the uptake has really been great. I'm still hearing - every time I publish something, my inbox gets flooded by patients saying, this is how I'm being treated as well. I was prescribed for, you know, 18 months, and now I've just been cut off. Right? There doesn't seem to be a lot of forward motion.
And when I work with hospitals and institutions and physicians to try to say, like, we really need a system on which, you know, you or somebody is responsible for following up on the meds you prescribe, they don't have a great idea about how to actually do that. Right? You think about the case of surgery, the surgeon typically doesn't spend a lot of time with patients afterwards. So whose job is that going to be? There's a need for institutional solutions here, and I don't think we're anywhere close.
GROSS: My guest is Travis Rieder, author of the new book "In Pain." He's also a research scholar and the director of the master of bioethics degree program at the Johns Hopkins Berman Institute of Bioethics. We'll talk more about his opioid crisis and the larger opioid crisis after we take a short break. I'm Terry Gross, and this is FRESH AIR.
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GROSS: This is FRESH AIR. I'm Terry Gross. Let's get back to my interview with medical bioethicist Travis Rieder. In 2015, he was in a motorcycle accident that crushed his foot, required multiple surgeries, left him with intense acute and chronic pain that was treated with opioids. He went through withdrawal when he decided to break his dependence on the drugs. With better medical advice, the pain of withdrawal would have been unnecessary.
His new book "In Pain" draws on his insights as a patient, as well as his subsequent research into pain medicine, to examine the larger problems and dilemmas surrounding prescription opioids and the larger opioid crisis. Rieder is a research scholar and the director of the Master of Bioethics degree program at the Johns Hopkins Berman Institute of Bioethics.
One of the pain killers that you were given when you were in the hospital was intravenous acetaminophen. And you thought that that was really, surprisingly effective as a painkiller, but you were only given a few doses, even though you kind of begged for more more because it was effective and not habit-forming. So why couldn't you get more of it?
RIEDER: Yeah, this is such a wild story. I didn't know for a long time, and so all I had was this immediate experience where, after that fifth surgery, when I was really behind the pain, the pain management team upped all of the doses of everything I was on, but then also gave me three doses over 24 hours of IV acetaminophen. And for me, the way I described it at the time, it was as good as morphine in the short term, but it didn't knock me out. It didn't sedate me. I didn't have to worry about my breathing. And so I really liked it for that reason, and I asked for more.
And I remember one of the residents being kind of hesitant - you know, one of these young doctors in training - and kind of mumbling something about, I don't think you can have more because of your liver, or something. I didn't question it.
Months later, I'm an invited speaker at an anesthesiology conference, and I'm hanging out with some of the docs over a coffee break. And I'm telling them the story because I'm like, hey, I've got these, you know, really smart people. I'm going to pick their brains. And I get to the point where the resident mumbles this excuse to me, and they all chuckle. And I look at them, and I say, what? Is that not the reason? And I can tell in that moment that they all know something and that they all know that they all know. And one of them looks up at me and says, they're not giving it to you because it's too expensive.
(Laughter) And my mind was blown. I was like, wait a minute - what do you mean it's too expensive? It's just Tylenol, right? They said, yeah, but the IV form is still on patent. And so once it goes off patent, it'll be standard of care because it works great. But, you know, for now, it's too expensive, so most of us have hospital orders not to use it.
(Laughter) This blew my mind, and I eventually went and I did my homework, and I should say that the case isn't that clear. There's mixed reviews in the literature. Some people say it's just as good as morphine, which is what I said about my own experience; some reviews say it's actually no better than oral Tylenol. So there's some mixed messages coming through in the literature, which justifies some of the hospital reactions. But it blew my mind because, you know, here I was telling them, if you give me Tylenol, I won't need as much morphine, and they couldn't give it to me. And that just kind of made me crazy.
GROSS: So what strikes you as most crazy about that?
RIEDER: I think what it started for me was a dive down the rabbit hole of, how does money play a role in how we treat pain and how we overutilize opioids for pain, right? Because what it made really clear is that opioids are dirt-cheap because a bunch of them have been off patent for decades, and that these other sorts of therapies can be really expensive.
And so, you know, you go out further into the future, into the less acute phase - you know, I would be in pain, well, for the rest of my life, but, you know, in more severe pain for months and years - and a lot of what I was supposed to do to help that pain was physical therapy, right? Well, physical therapy stopped getting coverage by my insurance when I turned over the new year, and I'd no longer hit my deductible. So it was too expensive so I stopped because I was a, you know, relatively new faculty member; I couldn't afford it.
And so I keep thinking, well, surely a bunch of other people would also struggle to pay for this, right? So there are all of these different methods for handling pain that - they could be arrows in the quiver of medicine. But they're hard. They get covered less. They're expensive. And so what do we know about opioids? Well, they're incredibly cheap. So morphine, as you know, cents per dose, a couple cents per dose. And they are easy, right? You give them to the patient - the patient feels better immediately. You give pills to a patient who comes in complaining about pain - they leave happy.
So this really led me to investigate this, like, deep system of perverse incentives that have pushed us towards just prescribing opioids, instead of doing something more integrative and holistic.
GROSS: You've had to go on opioids again, after going through withdrawal, because - you had your sixth surgery after you had your withdrawal, right?
GROSS: And then also then you had a tooth extracted, got an infection and had severe pain from that and had to go back on opioids for that. But you handled it differently those times. What was different?
RIEDER: The biggest thing that was different before the sixth surgery was that I exploited my access. Finally, one of my very smart friends said, you're faculty at Johns Hopkins; surely you can get better care than this if you just ask. And so I sent an email to a colleague in pain medicine who I didn't know very well, but I finally brought myself up to email him. Gave a kind of, you know, two-sentence summary of, I'm really scared; I need help. And he said, of course. Come talk to me. And basically, by exploiting that access that I had only because I happened to be at Johns Hopkins - right? - I then had access to world-class pain management.
And they spent so much time with me. And a lot of what they did was just counsel me on what to expect. And so, you know, this next surgery was going to be incredibly painful. It's a lot of soft tissue damage. But if you take low-dose oxycodone or hydrocodone - so I ended up taking Percocet - if you take this absolutely only when needed and put up with a lot of pain, then you should be able to do it in very small amounts for less than two weeks. You probably won't have any withdrawal effects - although hard to predict. But there won't be a lot of struggle. But you're going to have to put up with more pain.
And just having that kind of counseling and preparation and knowing how to weigh the costs of current pain against the future cost of, say, having to go through withdrawal if I become dependent, that helped me form a plan that I could stick to after the sixth surgery. And I should make clear I wasn't then, like, magically able to just tough it out. It was horrible; it was excruciating. But I was more scared of withdrawal than I was of the pain, and I was able to stick to that plan of just taking very little opioids to get through the worst part, to be able to sleep a little bit, and I was able to recover without developing dependence again.
GROSS: Well, I want to talk with you more about this, but first we have to take a short break. If you're just joining us, my guest is Travis Rieder. He's the author of the new book, "In Pain: A Bioethicist's Personal Struggle With Opioids." We'll be right back. This is FRESH AIR.
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GROSS: This is FRESH AIR. And if you're just joining us, my guest is Travis Rieder, author of the new book, "In Pain: A Bioethicist's Personal Struggle With Opioids." He became dependent after he was in a motorcycle accident that shattered the bones in his feet - he nearly lost his foot - and he endured extreme pain from the accident and from the six subsequent surgeries. He uses his personal experience to explain some of the larger medical issues surrounding opioid use and dependency.
You write that you've found an incoherence in modern pain medicine. So what do you mean by incoherence? Do you mean, like, conflicting approaches?
RIEDER: I do mean something of conflicting approaches. Basically, pain is suspicious. It's suspicious because it's inherently subjective. So you can't know what my pain is like, I can't know what yours is like, and our doctors can never know exactly what our pain is like. And that combined with the fact that you can get a prescription for a highly addictive, sought-after drug by reporting pain kind of forms a bubble of suspicion around pain medicine. And pain patients will tell you this, right? They'll tell you that they deal with stigma and suspicion a lot.
And so because of that unknowing - right? - we've just swung back and forth like crazy between, well, these drugs are too dangerous so we shouldn't give them to anybody, or once we start to get comfortable with them for whatever reason, we just give them out like candy, which is a little too close to what we've done for, you know, a couple of decades. The incoherence that I point to is that I think right now we're kind of midswing. Starting in the '90s we went towards really aggressive prescribing. And now, because of the opioid crisis, we're trying to slam that pendulum back.
And if you talk to pain patients, they'll say, we already have, right? They're experiencing the stigma of doctors not wanting to give these medications out at all and treating them as, you know, scare quotes, "drug-seekers." And so the pendulum has started to swing back, but that doesn't mean that we're sitting in the middle in some kind of nuanced way where we're using the medication well; instead it means that doctors are just doing all different things. Some of them are aggressively prescribing, some of them are withholding drugs because they think everybody is a drug-seeker, and very few of them have the training to actually use them in a responsible, evidence-based way.
GROSS: And then there's the issue of chronic pain and how, if at all, opioids should be used for chronic, you know, back pain or knee pain or hip pain. Where are the conflicts there?
RIEDER: The conflicts there basically come from the fact that we never had great evidence that opioids would be a good therapy for really long-term chronic pain, but we used it anyway. And so even if opioids make you feel better in the short term, the worry is, if you eventually get to the point where you require opioids to live your life, then you're going to get stuck on this kind of merry-go-round where you have to keep escalating the dose to keep the pain under control, and the therapeutic window, this ability to actually get benefit from the medication, will get smaller and smaller.
So that's part of the worry - that we just don't think that these drugs will be great for a lot of patients.
GROSS: So this spring, the CDC issued a clarification on its guidelines regarding chronic pain, saying patients shouldn't be suddenly taken off opioids or given a fast taper when they've been on opioids for chronic pain. So am I to interpret that as, like, a lot of doctors are saying, oh, you've been on the opioids for too long so just stop, or, you know, giving them a regimen to taper really suddenly, which would lead to withdrawal?
RIEDER: I think that's exactly the right interpretation. And so that's what the evidence accumulating, somewhat anecdotally, is. So basically, in 2016, the CDC came out with these guidelines for opioid therapy and chronic pain, and that's when they said, you know, this should not be first-line treatment. But they made a couple of points, and one of the points they made is, you should really try hard not to escalate dosage above 90 morphine milligram equivalents. So we translate everything into morphine for standardization. So you should try really hard not to go past 90, escalating the dose.
There was a lot of kind of ham-fisted, unnuanced policy reaction that said, look - the CDC now says that nobody should be on 90 morphine milligram equivalents or above, and so if you're on a high dose, we are going to taper you down to that point or below. And then, also, kind of the fear of being an opioid prescriber, in an era where we're becoming more scared of these drugs, have also just led physicians to start saying, you know, I don't want to be prescribing high doses. The DEA is going to be knocking on my door. So I'm going to taper you down.
But there have been these other sorts of initiatives where physicians will actually receive letters from the DEA saying things like, we notice that you prescribe a higher volume of opioids. And just the existence of that sort of noticing can have a real chilling effect, right? If you're a physician and you're like, my livelihood and my ability to not be prosecuted - right? - depends on not appearing suspicious. Maybe it's not worth it for me to continue prescriptions.
And that physician might take care of a lot of patients with cancer or with sickle cell - you know, these really profoundly painful conditions that require opioids in higher doses for longer periods of time. But people looking at raw numbers of prescriptions don't have that sort of nuance. So we certainly want the DEA to be able to identify pill mills, but we don't want there to be a kind of chilling effect on legitimate physicians who are trying to treat patients compassionately.
GROSS: I'd like you to explain where you think underground drugs, heroin, and underground sales of opioids connect with the medical issues that you've been talking about.
RIEDER: This is a really interesting story because we talk about the opioid epidemic as if it's this singular phenomenon. But what I argue in the book is that there are actually multiple opioid epidemics - right? - because a lot of folks will tell you, you know, I live in this city. I live in that city. Heroin's been around for a really long time, right? This is not a new epidemic for me where I live. And they're right about that. There are lots of places in the country where there has been heroin causing a lot of damage for a very long time. Now, starting in the late '90s, you get this kickoff of the prescription opioid crisis. And from 1999 to 2010, prescriptions of opioids quadrupled. And at the exact same time, overdose deaths from prescription opioids quadrupled. So it's a perfect trend line match. And that was a devastating kickoff of today's drug overdose crisis.
The thing is we've already started to squeeze the supply of prescription opioids because we have, as a country, become very concerned about this crisis. And so we've started telling doctors, hey, stop killing your patients. And so prescribing peaked between 2010 and 2012, but that didn't solve the opioid crisis because it was never going to solve the opioid crisis - right? - because if people have an addiction, their health condition is defined by this behavioral component where they will seek this reward even in the face of negative consequences. So if you take away their legitimate supply, some number of people who have an addiction will go where they can find the drug, which, in this case, is the black market.
So at the same time that we squeezed the supply of prescription opioids, overdose deaths from heroin shot up. And within a few years we get so much heroin and so much demand for heroin in the country that you have this sort of incentive to make heroin even more profitable, easier to transport, easier to sell. And so you want it more potent, basically. And this is where fentanyl, synthetic fentanyl and its analogues like carfentanyl come into play. And so the heroin today is just shot through with these really potent synthetic drugs. And that is what's killing the majority of people dying from the opioid epidemic today, not prescription opioids. So this is a really complicated story where prescription opioids kicked off what's happening. But solving the prescription problem absolutely will not solve the broader drug overdose crisis.
GROSS: Let's take a short break here 'cause there's plenty more to talk about. If you're just joining us my guest is Travis Rider. He's the author of the new book "In Pain: A Bioethicist's Personal Struggle With Opioids." We'll be right back. This is FRESH AIR.
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GROSS: This is FRESH AIR. And if you're just joining us, my guest is Travis Rieder, author of the new book "In Pain: A Bioethicist's Personal Struggle With Opioids." He became dependent after he was in a motorcycle accident that shattered the bones in one foot. He nearly lost the foot. And he had to endure six surgeries, so he was in a lot of pain. He uses his personal experience with opioids to explain some of the larger medical and bioethical issues surrounding opioid use. He's a research scholar and the director of the Master of Bioethics degree program at the Johns Hopkins Berman Institute of Bioethics.
You've been talking about how the medical opioid crisis has led to an expansion of the underground drug crisis 'cause a lot of people who are cut off from their medical supply of opioids end up on heroin or buying opioids on the underground market - you know, buying pill-form synthetics on the underground market. But we treat those two types of categories really differently. If you're getting medical opioids, then you're a medical issue. If you're lucky, you'll have doctors consulting with you on how to taper. If you're taking opioids underground through the black market, you're a criminal issue. You might be put in jail for it. In prison, you have to go to a drug clinic, as opposed to, you know, like, your doctor, for help with that. So as a bioethicist, I'd be interested in hearing your take on how we've categorized these two different sets of users in different ways, one medically and one criminally.
RIEDER: This is such an important issue. It haunted me, to be honest, when I started working on this book because I have this story where my - the harm from opioids to me was what folks call iatrogenic, right? It was caused by my medical care. And there's this very sympathetic story out in popular culture of this person who has an injury and goes in the hospital and then kind of unwittingly develops a dependence or an addiction and then becomes a statistic in this overdose crisis. And that's a very sympathetic story.
The problem is there's this other story that's been happening for a long time where somebody develops an addiction to heroin, and we don't listen to whatever reasons they might have had for taking heroin. We don't care very much because they're a criminal because heroin is a crime. Doing heroin is a crime. So when they become a statistic, we don't care as much.
And so I would get this question a lot early in my research. Why are we talking about the opioid crisis so much today? And the implied answer is, well, because a bunch of white people started dying when it hit rural America and then suburban America. And eventually, powerful politicians start having people that they knew become victims in this crisis. And so the reason that racial component comes up is because the heroin crisis prior to the 1990s was found largely in cities, and it disproportionately affected members of the minority community.
Today's epidemic, or at least what sparked today's epidemic with prescription opioid crisis, are disproportionately white. They get this really sympathetic telling of their story when there have been people of color dying from heroin disproportionately for a really long time. And we just didn't talk about it. And we treated them like criminals. That's a travesty. It's absolutely tragic. It's a stain on our response to drugs in this country.
People take drugs for a reason. And whether you started with oxycodone or with heroin, if you were medicating something and it hurt you and you ended up, you know, dying from overdose, your life matters. And we need to just kind of announce that loudly every time we have this conversation.
GROSS: One of the things you looked at was how military medicine handles pain. And understandably, the military has to deal with a lot of pain patients. So what are some of the things you learned by looking at the military?
RIEDER: Boy, this was interesting. Yeah. So I got introduced to a couple of these military docs through a friend of a friend. I went to this organization called DV CPM, which is an integrative pain medicine group for Uniformed Services University. And these guys are doing wild stuff. So one of the first things that they told me is that they go around training Army physicians to use acupuncture.
And I was like, oh, well, that's kind of wild. I didn't know that acupuncture was taken, you know, that seriously that the military would be into it. And then they're like, yeah, no, we use acupuncture on the battlefield.
GROSS: On the battlefield?
RIEDER: On the battlefield.
RIEDER: So they're training people with these ultra-mobile sterile packs of what's called auricular acupuncture, so that auricular meaning going in the ear. So they're having folks, like, if you get injured on the battlefield, your medic, you know, has the shot of morphine. They're prepared with that. They have whatever triage kit that they have.
But they also have this little pack with - I think it's five sterile little gold needles that they then inject into your ear. And the data they have on this is really pretty shocking. I mean, they tell stories about people for whom the acupuncture is so effective that they end up either using very little or even no opioids, you know, for some stretch of their treatment.
That's kind of the most surprising thing that I learned. But they've also done a lot of work on using nerve blocks. So trying to turn a nerve off essentially, you know, to your leg or to your arms. They have these mangled limb injuries. You know, body armor covers the torso, but you have arms and legs sticking out.
So they have a lot of these mangled limb injuries. So they try to turn the nerves off to a mangled limb, and then they don't have to use any opioids. And this is really important 'cause if you're trying to fly somebody back from Iraq or Afghanistan, and they have to get all the way back to Walter Reed, how many hours are they going to be completely sedated with morphine before they get back? And that really starts a train leaving the station that is pretty hard to control.
So now they have patients who come back with the nerve block who don't need any morphine for the flight. So they're doing really incredible things. And a big part of it was because, as the military, they deal with more pain, and so they had this, you know, decade where they had to figure out, how in the world are we going to treat our soldiers without having a huge proportion of them coming out struggling with opioid use disorder, which is what they were facing? And so they're really focused on developing state-of-the-art opioid-sparing treatments, and they're doing incredible work.
GROSS: So I'd like to know if you're still in pain in the foot that was crashed in the motorcycle accident.
RIEDER: Oh, varying degrees depending on the day. You know, I - given what I've been through, I don't even think about it very much. I rock climb now, which is a funny fact.
GROSS: Oh, no, you're kidding me.
RIEDER: No, no, no, I do. I don't, like, rock climb outside and stuff. I'm pretty risk-averse these days. I do indoor rock climbing. And I have to do it a little bit goofy because one of my feet doesn't work very well. But, you know, I found things to kind of help me exercise and fill the kind of void that was in my life because I was a little self-pitying for a while. My foot doesn't work, and it hurts all the time. But I found ways to work around that.
And so, you know, I try to live some of the values that I found in my research where, you know, your attitude can help a lot with your pain. You avoid catastrophizing. You try to think about what you can do. You try to work in the ways that you can. And, you know, who knows if it's placebo or not because it's what my research tells me. But I feel like I've gained a lot in the years since I've been really trying to do those things.
GROSS: There's a lot to be said for the placebo effect.
RIEDER: That's right. I'm a big fan of the placebo effect.
GROSS: Me, too. Travis Rieder, thank you so much for talking with us. This was great. Thank you.
RIEDER: Well, thank you for this. This has been a real thrill to chat with you.
GROSS: Travis Rieder is the author of "In Pain." He's a research scholar and the director of the master of bioethics degree program at the Johns Hopkins Berman Institute of Bioethics.
Tomorrow on FRESH AIR, we'll talk about last month's Supreme Court decisions on gerrymandering and the census citizenship question and what the next steps might be with the citizenship question. My guest will be Ari Berman, who covers voting rights for Mother Jones. The census and partisan gerrymandering will help determine the political map of the 2020s and which party is in control of the statehouses and Congress. I hope you'll join us.
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GROSS: FRESH AIR's executive producer is Danny Miller. Our technical director is Audrey Bentham. Our engineer today is Charlie Kaier. Our associate producer of digital media is Molly Seavy-Nesper. Roberta Shorrock directs the show. I'm Terry Gross. Transcript provided by NPR, Copyright NPR.