Taking Action Summit: Stigma and Bias in the Treatment of Substance Use Disorders: Clinical Impact and Opportunities for Change
Good morning. Welcome to all of you joining us here in the room in Rochester, and also to those of you joining us virtually. My name is Julia Shaw and I'm excited to introduce Dr. Peter Jackson.
We're very fortunate to have Dr. Jackson as an active member of our clinician advisory board at the University of Vermont Center on Rural Addiction. Dr. Jackson is an assistant professor at the University of Vermont Larner College of Medicine and the University of Vermont Medical Center, where he specializes as both a child and adolescent psychiatrist and an addiction psychiatrist.
In both the American Academy of Child and Adolescent Psychiatry and the American Academy of Addiction Psychiatry, he currently serves on committees responsible for preventing and treating substance use disorders in teens. His current research, teaching, and presentations, locally and nationally, have included emphasis on the role of parents and family members in the prevention and treatment of substance use disorders and decreasing multi-generational perpetuation of substance use disorders within families. He completed medical school at the University of Utah School of Medicine, residency at the University of Michigan Medical Center, and fellowships in both child and adolescent psychiatry and addiction psychiatry at Harvard Medical School.
Dr. Jackson's session today is entitled "Stigma and Bias in the Treatment of Substance Use Disorders: Clinical Impact and Opportunities for Change." There'll be an opportunity for questions both in person and virtually following Dr. Jackson's session.
Welcome, Dr. Jackson. (audience applauding) - Okay, thank you so much. Thank you to the University of Rochester and thank you to those that are joining us here.
This is a beautiful place to be together. And thank you to those that are joining us online. So, as Julia mentioned, I'm a child psychiatrist and an addiction psychiatrist, so those two worlds kind of impact the way that I see stigma and how it impacts substance use disorders. I don't have any financial relationships to disclose or conflicts of interest, but I'm glad to be here and speaking with you guys today.
So some of the things that I wanna review, we're at a stigma conference, talking, having all these talks, all about this pretty narrow topic, I hope that this can in some way be complementary and that we can save some time for questions at the end. But I want to think about the impact that bias and stigma can have on the individuals and families receiving treatment. I want to talk about how we can understand and improve our appreciation for sort of how substance use disorders happen and look at that from a child psychiatry perspective, and also think a little bit from a medical model about the disease model of addiction, how we think about that and maybe thinking together how we can use the science that we have in a balanced way that's helpful for families.
And then talk a little bit today about the impact that stigma can have on those of us who provide care for individuals and families struggling with substance use disorders. And then talk a little bit at the end about strategies that we could use to help decrease stigma. And that's sort of where we're headed. So briefly, for me, when I was first starting my clinical rotations in medical school, so this is the beginning of third year of medical school, I was assigned to start on internal medicine.
So it's sort of my first time in the hospital. I'm nervous and excited and I've come out of the classroom, been studying in books mostly for the past two years, and so excited to actually get in the hospital. And I got assigned to follow a patient who was in the hospital and very sick. I was brand new, bright-eyed, bushy-tailed, again, nervous, and got assigned to follow this gentleman who was in the hospital and had been in the hospital multiple times for recurrent infections.
So the medical team is working with this individual and trying to figure out like how we can help him. He happened to have some overlapping characteristics with me, just sort of demographics. And so I kind of identified with him and really wanted to be there and help him out. And so the team was wondering why does he keep getting sick?
You know, what are some of these struggles about? Does he have a type of blood cancer? Does he have an autoimmune deficiency or some other immunological deficiency? And so he was there and the treatment team had been working with him and people rallied, you know, people were rallying together to try to help this person.
And so off we went, working. And I don't remember exactly how many days, but a couple of days in, I came into the team room and the senior resident came in, the chief resident came in, and just was so angry. So angry, and I couldn't really figure out what was going on. And they were talking about this patient who I had been following and the resident came in and said this, "What a piece of shit."
And I was like, "Whoa, what happened? What happened? Why this turn?" And what had happened is overnight, one of the nurses had walked in and saw the patient injecting crushed pain medications into his portacath that he had to help with long-term antibiotics and other issues that he was working with to fight these infections.
And the whole emotion amongst the treatment team just shifted, just dramatically shifted. And so this was one of many experiences that I've had where I saw sort of the stigma around somebody struggling with a substance use disorder like massively change. Now, one thing that I think is important to think about is sort of who is our audience and who are we talking to. And I really admire somebody who's spoken in the past, his name's Neal Maxwell, on different topics, but he would start a talk often in saying, "My most immediate audience is myself."
So in thinking about who's here in the room, who's here visiting with us on the Zoom and watching the conference online, who's the audience that we're talking to? I want to just recognize that my first audience is myself because we don't sort of like overcome our stigma and bias and we plant our flag and like, "Okay, I've got that, I've figured it out. I gave a talk about stigma and bias so I don't have stigma and bias anymore." This is something that we continue, we continue to work on.
And in thinking that, here we are at a conference, thank you so much to the University of Rochester, we're at a conference, an entire conference about decreasing stigma. And so in some ways, and this phrase is interesting 'cause we're in this beautiful recital hall, are we preaching to the choir? So we are the people coming to an entire conference on stigma. At UVM CORA, the Center on Rural Addiction, in our initial basic needs assessment, I just wanted to identify this, we asked providers in the community, rural providers, primary care providers, asked them, "What are the top three provider barriers to treating opioid use disorders in your practice?"
And the least commonly selected barrier was provider stigma. But the number one most commonly selected barrier was medication diversion. So those don't really work very well together, right? I'm gonna exaggerate this a little bit, but basically, and I'll include myself, we as providers are saying, "No, no, no, provider stigma is not part of the problem in my practice, but my number one worry is that people are gonna divert their medicine," which is sort of, that feels stigmatizing to me.
And then we asked, "What are the top three patient barriers to treating opioid use disorders?" And stigma was second only to transportation barriers. We know there's transportation barriers, but we're asking these providers, "What's getting in the way of the patients to come in and get help?" And they're basically saying transportation.
But number two, stigma. So I don't have stigma, but the patients are feeling stigma, but it's not because I'm a provider experiencing stigma, provider doesn't experience stigma. The patients are feeling stigmatized, but it's definitely not coming from me. I'm exaggerating that a little bit, but I just found that really interesting in our needs assessment as far as stigma goes.
So when I think about preaching to the choir, we know this, probably many of the other speakers have had a slide like this. We're gonna use better language. We're gonna try to use language that works. And when I say I'm my own first and most immediate audience, I gave a talk about stigma, I don't know, a couple of months ago, and somebody, thankfully, 'cause I invited them to, called me out and said, "I think you said something sort of stigmatizing in your talk about stigma."
And so please, I invite you guys to do the same thing. We're trying to use this language as best we can. But on the other hand, this is still really entrenched in our field. We still call our national organizations names that include words like abuse, which we're trying to get away from, so SAMHSA and NIDA.
So we've got all this work to do. Even though we're sitting here at the conference, a whole conference all about stigma, we need to sort of think about it for ourselves, obviously, and then think of strategies of how we can be advocates to improve this. So why does it matter so much about the language? This is another thing that I'm thinking about to argue that we're not necessarily preaching to the choir at this conference.
So this was a study done by John Kelly down at Mass General in Boston. And individuals would be given this little vignette, this little clinical paragraph about somebody. And can anybody here in the room just shout out what is the difference in these two paragraphs? And I've cut out a bunch of it, but what's the only difference in these paragraphs?
Can somebody see that?
- [Audience Member]
(mumbles) A substance abuser or substance use disorder.
Right. The only difference, when they gave this paragraph out, the only difference was in one, Mr. Williams is called a substance abuser. And in the other paragraph, Mr.
Williams is identified as someone who has a substance use disorder. That's the only difference. And they hand this out and they give it to clinicians and they give it to people and say, "How are we gonna interact with Mr. Williams?"
And what's important to know is I think it was around 60% of respondents had graduate degrees, around 60% of respondents are in the field of some type of mental health treatment, so it's not like we're just giving this to people. This study was given, the questions are given to people like who are trying to help this problem. But there was still statistically different responses on this survey of how to interact with this person, such as "Mr. Williams's problem is caused by a reckless lifestyle," or "he's responsible for causing his problem."
"He should be given some kind of jail sentence to serve as a wake-up call." "His problem is caused by poor choices that he made." "He could have avoided using alcohol and drugs." "He'll do something violent to himself or violent to others and he should be referred to some sort of spiritual or natural healer," indicating this is sort of a moral failing or this is a characterological problem.
So those answers were all statistically different just by reading a paragraph that calls Mr. Williams a substance abuser versus an individual with a substance use disorder. And so when I'm taking call, when I'm on the phone and I hear our crisis clinicians call me up and say, "Dr. Jackson, we have somebody here.
This is just an addict. This is somebody who's here who's drug seeking," I have to pause and I have to say, "Wait, no. We have to restart. We're not gonna say it that way."
Because I know, even if I'm trying so hard to be like compassionate, if our conversation is like that, I know even subconsciously that that's gonna impact you and impact me as we're trying to plan of how to help this person. So I want to talk briefly about a couple of facets of stigma that are, I think, addressable and that contribute a whole lot to why this condition, these conditions are so stigmatized, and that's cause and controllability, and talk about that a little bit. So cause. Sometimes in a stigmatizing way or in any type of way, we're trying to figure out why did this happen?
Why did this substance use disorder happen? Why is it going on? And we can sort of get this polarized, this polarized view like it's not your fault or it is your fault or like we're trying to identify fault and we can definitely get away from that. So as a child psychiatrist, this was an article written by Joe Biederman and his group also down in Boston, looking at sort of can we think of this in a broad way?
Can we think of all the potential contributing factors for why somebody has developed a substance use disorder? Kind of why they happen. And so if you look at this on sort of like a flow and think about stuff even like genetic predisposition, so much that goes into the risks for developing a substance use disorder, the challenges around developing a substance use disorder, and again, I'm bringing my child psychiatrist hat to this because that's how I think clinically, we see so much of this that we don't need to like try to find whose fault it is, but we can look at it in a compassionate way and think about how we can think openly about all of the potential contributing factors to why somebody might be struggling with a substance use disorder, why, sort of its beginnings.
We know, from lots and lots of studies, this is an overly simplified slide, but to put a visual there, when we think about heritability of substance use disorders, we know that it's about 50%. So roughly, heritability is we're trying to estimate like nature or nurture, we're kind of trying to ask those questions. And so heritability of 50% is similar to other really common conditions like type 2 diabetes, prostate cancer, and other conditions. So we know that there's a strong heritable component.
So if a whole bunch of teenagers go to a party and use a lot of alcohol, the majority of them are gonna somehow go on in their lives and hopefully nobody got hurt, et cetera, et cetera. But there's gonna be 1 1/2 to two out of those 10 teenagers that, for no fault of their own, has a really, really, really different experience than the rest of their peers that may just be genetically related. And it's not just one gene, it's multifactorial. But that's important for us to know.
This was a study done in 2015 from Swedish National Registry data that's sort of looking at is it nature or nurture the risk of developing a substance use disorder. So they looked at a triparental design where they're saying, "Here's a parent that gives you your genes and your rearing, here's a parent that only gave you genes," and in this case, so it's a biological father who has not lived with a child, and "here's a parent that's only giving you rearing but not genes," in this case, a stepfather who's not genetically related to you but who's in your environment. And basically, we're seeing that there's really strong contributing factors to both genetics and environment when we think about kids being exposed to that and developing a substance use disorder.
And we all know about adverse childhood experiences. And when you look at these studies, the number one household challenge that's experienced by so many kids is substance use difficulties in the home. And again, here it says "substance abuse," a word that we're trying to get away from. This is pulled from the ACEs study.
Okay, so let's say that we, and let me keep track of the time here. So let's say that we are able to kind of overcome our blaming. Okay, so we have softened my stance, I'm able to see that there were many contributing factors to you developing a substance use disorder, and think about all these potential things. So okay, now I'm overcoming my sort of blame, this is your fault.
But now just stop. Now just stop. Like why can't we just stop? Stop, control this condition.
So we're gonna talk about controllability, it's not controllable or it is controllable and how that can influence stigma. So we have lots of data and lots of imaging studies that talk to us. It's not within the context of this talk to go into this in detail, but that talk to us about how when somebody is experiencing a substance use disorder, it is a identifiable, even visible disease when we look at the neuroscience. And so here, you're seeing reward receptors and reward areas being desensitized over long-term use.
And people talk about this a lot. Like, "I just don't enjoy the things I used to enjoy as much," because those areas are sort of desensitized, trying to downregulate. Our bodies are kind of this constant thermostat trying to find homeostasis. And when it's exposed to a substance, our bodies are actually making neurologic changes that don't happen like that.
They take time to develop, they take time to recover. And so desensitization in reward areas, hyperactivity in areas associated with anxiety and distress. And this is a great article that's very digestible, this paper from Nora Volkow from 2016, talking about sort of the disease model of addiction, looking at all these various parts of our brain, the ways that they contribute to thinking about how substance use disorders really create a pathological sort of disease process. And so I would invite you to take a look at this paper if you haven't, but basically, looking at some of these steps.
So initially, voluntary use, "Oh, I'm gonna go and make this decision," becomes impulsive use. We have lots of other conditions that talk to us about pathologic impulsivity and we don't say that's a character flaw. I work with ADHD all the time as a child psychiatrist. I don't say, "That's a character flaw," "That's a moral failing."
Feeling good becomes not feeling bad. And that happens particularly, as those of you who work in a field of treatment of opioid use disorders, especially there. Initially, it's this reward and it's this euphoria and it feels really good. And within a relatively short period of time, the whole game is trying to not feel terrible.
And we know scientifically, anatomically, we know why that is. Withdrawal symptoms that are initially like "Ugh, that feels crummy," start to become just really, really, really intense. Restlessness, intense depression, and feeling very sick. And then looking forward becomes obsessing and planning.
Again, we have lots of other conditions that we know about where obsessiveness is pathological, obsessive compulsive disorder and other things, and we can see this in science. So again, we're not looking to do like a really deep dive with the neuroscience today, but as we look at this, we know that it happens, we know that we can see pictures, and we know exactly that this is a disease process happening, and we know that that disease process will take some time to recover, but that we do see it recover. And so again, we're looking at sort of desensitization of reward pathways. And then one month later, one month, it's still not looking like a sort of a recalibration of the reward pathways in the reward areas of our brain.
But you see that come back at 14 months after and a lot of people hypothesize and talk about sort of what is the length, what is the time course of recovery? Some people talk about sort of a two years into abstinence, really starting to feel some of the lessening of that, of cues and the hypersensitivity. So thinking about the disease model, I think, can help us combat stigma, where many, many years ago I think we saw this, as a field, as a character flaw or a moral failing. And I want to talk about, briefly, I wanna talk about using that model in a balanced way.
So I will say on this stage that absolutely, we can say that substance use disorders follow a disease model of a condition. We have to be a little careful to not sort of take this banner forward and say, "It's a big, bad, terrible disease," because then we can err on the side of prognostic pessimism. We're sort of starting to like terrify people. "Oh, it's a really, really bad disease, so I definitely can't recover."
So when people think about is a substance use difficulty a problem or is it a disease, first and foremost, we have to like remember and be aware that we know scientifically and we have descriptions of these conditions that can help us understand substance use is not substance use disorder, substance use of any kind is not a disease. But we know that there's a pathway here. So I think as we're sort of combating and saying, "Substance use is not a moral failing, it's a disease," we also have to be a little careful on that as to how we describe that with patients. So if we think about substance use disorder as a problem, sometimes people feel like, "Oh, then it's fixable and it's controllable.
I got this, I can make improvements." If we think of it as sort of only a problem and not a disease model, we think, again, moral failing. "If you had enough motivation, just stop," okay? But if we think about it as a disease, so the pros there is we can sort of think of the compassion that comes around the causality of substance use disorders.
We can be less blaming. But if we're not careful, the cons of the disease idea can lead to prognostic, oh, sorry, that's a missed typo, prognostic pessimism. "This can't be fixed, too ingrained, I'm doomed." So we find this balance.
I liked this, I've looked into this a little bit and I liked this article by Dingel in 2017. Both of these articles talked about just giving us little caution as we're thinking about the disease model. One was around mental health conditions, one around substance use disorders. But this is a quote that one of the patients said, "I don't have to know why it snows, I just have to shovel it."
So I get all geeked out about the neuroscience and I'm like, "Oh, no, no, I can explain this to you. I can tell you everything that's going on in your brain. Let me draw this out for you." And some people, we have to realize, some people are like, "Ha, I don't need to know why it snows.
I just need to shovel it. Let's focus on the therapeutic treatment." And so, you know, that's just encouraging us to think in a balanced way. So impact on those seeking care, wanna talk about this briefly.
I'm sure this has been part of many other presentations and will be in other presentations, but it's not really surprising to us to think about this. This study done by Kane in 2019 was middle and low income countries. So this is like a worldwide look. Every continent is looking at this, the challenges of stigma around substance use disorders that lead to less treatment seeking, poorer health outcomes, less engagement, in the end, less education and less full-time employment because they don't get help, social isolation, and again, it's ubiquitous and worldwide from this study.
"Less treatment seeking," sometimes I think of 10 and 10 in my mind because we have a lot of data that tell us that of those struggling with the substance use disorder, 10% are receiving treatment. 10%. And we have a lot of studies and data that show us of those beginning to struggle with a substance use disorder or with other mental health conditions, 10 years between the time that they probably met criteria for that difficulty and entered treatment. So I think of that sometimes for me, just to sort of remember, like 10 and 10.
10% receiving treatment. 10%. And 10 years sometimes before somebody's finally like, "I'm gonna go get some treatment," or maybe before they're able to access treatment. This phrase came from a lecture that I heard as a medical student.
I'm gonna talk briefly about my sort of personal journey and how I'm gonna try to own my own stigma and things that I'm still working on. But I remember hearing this and I hesitated somewhat to put this up because I don't want this to be seen as a stigmatizing statement. Let me tell you the way that it was given in the talk that I heard as a, I think third year or maybe fourth year medical student, thinking about like, "Oh, I'm thinking about doing this," was "the liver goes two decades after the marriage." And the impact that that had on me, thinking about, as I was in medical school, thinking about the biopsychosocial formulation and thinking about how medical conditions impact not just somebody's kidneys or their heart or their liver, but how they impact somebody's overall wellbeing, their ability to be in loving relationships, their ability to use their skills and talents, their ability to find rewarding employment.
So this resonated with me because I said, "That's really tragic to think about that." And this is part of that waiting so long, because of stigma around substance use disorders, waiting so long to get into treatment. By the time we see liver failure, there has been potentially so much else that's been harmful and hurtful in an individual's life. So a poor prognosis.
When there's stigma, when people are experiencing stigma, they feel less empowered, they feel less likely to seek treatment, and they have lower self-esteem. Briefly, I mentioned about families. So my colleague Dr. Brady Heward is giving a talk, I think at the next breakout, around families and focused on families.
That's something that we're looking at a lot and working on at the University of Vermont. But the stigma impact on families is sometimes that people go and seek treatment in this quiet and secretive way. Nobody who's getting a knee replacement tells their extended family or their employ or their friends, "Uh, I have a work trip. I'm gonna be gone on a work trip for the next three weeks, the next 28 days."
But we do that. People are trying to find a way like, "Yeah, sorry. Dad's going off on a work trip for a few weeks and we don't wanna talk about that." So we miss a potentially really powerful set of allies in family members and we miss potentially really important opportunities for prevention for the next generation or for other family members.
And I'll talk about that a little bit, but if you want to hear more about that, Dr. Heward is gonna talk more about families in the next breakout session and we'll talk about that a little bit at dinner tonight too. So the impact on those providing care. Again, let me sort of peak at the time here, see how we're pacing.
So this is something that I wanted to talk about a little bit and I'll share, I'll try to share a little bit of my own experience. So impact on professionals. So this could be physicians, this could be nurses, this can be social workers, recovery coaches, any of the above. Decreased motivation, feeling dissatisfied, resentment, powerlessness, feeling that people are gonna be violent towards you or these people, you know, these individuals are not motivated and getting these negative ideas.
And I wanted to talk about less clinical providers educated in that field of expertise. I'll talk about that in just a little bit. But some of this comes from those same studies. And we're gonna talk briefly about courtesy stigma, as also talked about associative stigma, which is sort of the stigma that's experienced by those closely tied to or in contact with stigmatized groups, treatment professionals, family, and friends.
They sort of ask me, "Can you add a little bit of this into the talk? I think it's really important." It feels a little self-serving because the last thing I want is like this talk being about, "Oh, poor us as professionals who are trying to provide treatment for this." But we do need to think about it because we need next generation of professionals to train up and think about it.
So because there's this associative stigma, it can further isolate the individuals with a substance use disorder. Because if your family is stigmatized and ostracized and othered and if your treatment provider in their hospital is sort of extracized and othered, it's like compounding the problem with this. And so sometimes, those of us who are working in the field of substance use treatment, how does that feel to tell somebody what you do for your job? How does that feel?
A lot of times, I don't know how you guys experience this, but a lot of times, I'll say, "I'm a child psychiatrist, I work on an inpatient child psychiatry unit, and I'm an addiction provider and an addiction psychiatrist. I work in a substance use treatment program." And people are like, "Oh. Oh."
You've gotten that response right? "Oh, oh." And how does that impact us? Like how does that impact us when we think about that?
I'm so sorry to hear that. So when I went to med school, I was gonna be a big, bad, awesome surgeon. I was positive. I was positive about it.
And I'm still thinking like how to own my own experiences and why this was such a hard change. And I had these moments in like end of, midway through medical school. I had no idea a psychiatrists were even MDs when I started medical school. Just had no idea, not on my radar at all.
I was gonna be a surgeon. And it felt like people just cheered me on, "Yeah, it's gonna be so awesome." And I got partway through medical school and I was like, "Holy smokes, this other field is like calling me. It feels so exciting.
I want to do it." And then there was this like, "But I gotta hide that away." And when I went and started telling people, I got the worst feedback. I got the worst feedback.
One of my neighbors who was like, "But you're so normal." That's a direct quote. One of my neighbors were like, "But you're so normal." Ugh, that was so bad to hear.
"But you're so normal, why would you do that?" And I remember, like, it hurt. It hurt to hear that. And these were a lot of people close to me.
Almost everyone, except my wife for whom I'm forever grateful, who, when I first told her, she was like, "You go." She was like, "That is awesome. I can tell you're passionate about it, you go." So, but the more subtle, you also get the response from others who are more kind.
"I'm a child psychiatrist, I work in an inpatient child psychiatry unit. I work in an addiction sub, you know, treatment program." "Oh, you are such a hero. You are such a hero."
Do you also get that sometimes? Because it's sort of this, that's a more subtle but still part of sort of the stigmatized. Like, "Oh, that's like the worst, that's like a dirty job. And so good for you for being willing to do that.
Like you're such a hero." So we have to be careful on both of those sides. And I hope that over time, you also get this like, "Oh, you must have been bad in med school. Like you couldn't get a residency in anything else, so you had to default to to this type of field."
But we have to be a little bit careful. And sometimes we see in our programs, the substance use clinic, occasionally we have like a good donor, but so often, the substance use clinic is like back corner, back corner, highest floor, no signs, down at the back, get in the back. And we have problems with this in our hospital systems. When you get those big, donated, huge, big atriums at hospital systems and they're so big and beautiful, dermatology, ear, nose, and throat, the cancer center, and addiction treatment?
No, no, no, no. Somewhere in the back, not labeled. I'm exaggerating this a little bit, but we have to be careful about this. What impact does that have on nurses and social workers and physicians' assistants and doctors who are training?
Like do you wanna work in the back with all the people in the back who are like, "We keep them quiet, we just hush hush back there." Or do you wanna work in the front, you know? So we have to be careful about this and that's a big problem. So I've talked a lot about this.
I'm going a little out of order with the slides. But jumping forward, this is a really impactful thing. So this is courtesy stigma, the impact of stigma on those who are seeking to provide help or support or connection with people who are struggling with stigmatized conditions. A lot of these ideas came out of the William White Papers.
So huge amount of research, very bright sort of thought leader. And this is a good, a whole blog that was written back in September 2015 about courtesy stigma. So I would refer you guys to that. So how do we go forward as professionals?
Well one thing that I think is really important is we wanna join our professional and scientific organizations so we're sort of grounded, grounded in good science, so that we're working together, so that we're collegial. We want to have a lot of interdisciplinary and interspecialty collaboration. Join our communities, be more active in our communities, tell people how great it is to work in this field. And increase community contact with professionals, individuals, families in long-term recovery.
Thank you, Stigma Summit. Thank you, University of Rochester, for putting this conference on. We need to do more of this. We need to do more of this.
Let me just see how much time, 'cause I know there's some other talks specifically on rural conditions. I guess I'll add just a couple of bits on this. Coming from the University of Vermont Center on Rural Addiction, kind of some of the things that we're thinking about. I cannot say that I'm like really a rural person.
I kind of grew up in suburbia. But I live right now in a town without a stoplight and when I went to see a physical therapist in this small town that I live in now without a stoplight, she knew everything about me. She knew everything about me. I'd never met this person before.
"Oh yeah, you're the person, (mumbles) this is the kind of car your family drives." Like she knew everything about me. So there is something about sort of smaller communities. There's a cohesion there.
There's sort of a closeness there. But it can sometimes be, it can be harder to have privacy and autonomy. And so that could lead people to be even more cautious to be able to talk about or experiencing it. We know, and this is just like a logistical thing, but we know that the more contact there is with a certain condition or challenge, the less stigmatized attitudes there will be.
So rural areas don't often have an addiction or substance use disorder treatment specialist in any type of discipline. And so it's just the way that it is. Less contact means more stigma, more contact means less stigma. That's not an individual judgment on any person, program, group, or clinic.
It's just what we know from some of this research. We also know sort of word of mouth information might spread more quickly. There's often a culture of self-efficacy, self-sufficiency, like "I should be able to take care of all this stuff by myself 'cause I'm so good at taking, you know, I have a lot of self-sufficiency." And then again, decreased privacy.
It's much more common that people will be connected in other ways. You know, in this town, like, it's hard to not be connected with lots of people because the person that provides treatment to your kids is also your kids' parent. And so it's just, those are some of the things that we talked about. And one study also, this study from 2015 showed that in some rural areas, there's higher accessibility and higher acceptability of other, of like tobacco use, alcohol use.
So we have to be careful when we're interacting with people from different walks of life, from different backgrounds, to not say, "I've got the one path forward. This is the one way to do it." That's just something for us to think about. There's not one single path for recovery.
So where do we go from here? Some of the research that has shown us, this one should be in bold right here, "Increase contact between the affected population and the larger population." That is where research tells us there is good evidence to decrease stigma. So if you want to feel less stigma towards an individual, group, someone who's different than you, and in this case, people struggling with substance use disorders or the idea of substance use disorders, find a way and connect.
Find a way and expose yourself to those types of things. I feel, and I'm relatively still, I think, young in our field. I finished my training about five years ago. But I feel optimistic.
I feel that so many things are moving in the right direction, actually. We're doing this whole conference, we have legislation, we have research funding, we have all these things moving in the right direction. You can argue pessimistically that it shouldn't have taken that long, it shouldn't take a huge crisis for us to finally sort of wake up and put some research behind this, put some research funding behind this, create some legislation around this. But regardless, I think we're moving in the right direction.
We can work on communication standards to avoid the wrong language that I'm sure, that we referenced earlier and is talked about in other places. But we also need to have widespread access to treatment. There's no wrong place to say, "I need help with a substance use challenge." There shouldn't be a wrong place to say that.
The emergency room, a primary care office, even in community settings, because we don't want people to have to navigate through the tunnels of the hospital and make their way to this back place where the addiction treatment program is. Again, I'm exaggerating that, but we need to make sure that there's good access. Telling stories. I like this article by Bruce Feiler, it's from the New York Times.
It's in the references. But being able to sort of tell our stories. There's this national organization, I'm sure many are familiar with FAVOR, Faces and Voices of Recovery, sort of letting people tell their stories, letting people sort of have access, helping families communicate about hard things. And I think about that as a child psychiatrist.
One of my mentors, Paula Rauch, who I really, really, really learned so much from, said, "One of the best things that you can give a family is to make hard things talk-about-able." That's one of the best things that you could give a family. And I'll tell you a little bit how we're trying to do that. So, and then person-centered language and treatment.
We sometimes are thinking like, "You've had four negative urine drug screens. Yes." But it should be so much more than that. It should be so much more than that.
What are you doing now that you weren't able to do before and that you love? "I'm fishing with my granddaughter again." Like that should be our measurement, right? That helps people feel human.
That makes them feel excited about what they're doing. And so what's life gonna look like when you're well? How are you doing? Not just what's your audit score?
How many negative urine drug screens have you had? So, and for ourselves, continue to ask ourselves these honest introspective questions. How am I doing? How am I feeling about this?
Working with the team, asking for feedback. I sort of said at the start of this, come find me. If something I said in this talk was like, "That was kind of stigmatizing," come find me and tell me and let's keep working on it, working on it back and forth together, and share what you enjoy about your work. "Oh, that's what you do for work?"
I'm gonna have a response ready for that response. Let me respond back to that with something. "Oh, you're such a hero." Okay, I have a response for that too.
Like, let's calm it all down. I'm a healthcare professional. It's really great to be in a helping profession. So we can share what we do.
Understanding the disease model, heritability, and balancing these things so it's not like prognostically pessimistic, but it also helps decrease stigma that we have. Let me see if I have time. I think we have maybe like a couple more minutes. Five minutes?
Okay. I can't get through a talk without giving just a little bit, a couple more pieces about the child psychiatry perspective. When kids use substances early on, their risk is so, so, so, so much higher. So much higher.
So use before 15 and likelihood of developing a substance use disorder, the percentages are so high. So if you could cut the risk from one in four down to like one in 25 to flip those statistics, we would wanna like shout that from the rooftops, right? And so that's something that I want to try to help do from a child psychiatry perspective. Kids are going through these awesome, awesome, awesome developmental stages with their brain that tend to wrap up around 25.
It's not like none of the rest of us can learn any new skills. You can teach an old dog new tricks, but it's harder. It's harder. And so unfortunately, it's also easier to learn and have those brain pathways work their way towards a substance use disorder when they're exposed while they're still developing.
Myelination, I could go on about it forever, but your nervous system, the pathways that are not myelinated and myelinated, it's like a 30,000 fold change in how fast those nervous, those neurons can transmit signals. And myelination is sort of happening and it's happening, let me see if I had one more slide, nope, it's happening in a way that, unfortunately, starts with gas and then breaks. And so we need to really help the kids. So child psychiatry needs a quote from Fred Rogers and I really like this.
"Anything that's human is mentionable, and anything that is mentionable can be more manageable." I really like that quote because that's sort of what my mentor Paula Rauch was saying about making things talk-about-able. And I really like that. And so one of the things, just if you're interested in knowing more, one of the things that we're, my colleague Dr.
Heward and I are working on is a family intervention that sort of works parents in early recovery. It's not for everyone, but we're starting this, we're just starting the recruitment phase for this study. Parents in recovery, would you like some support for your family in talking about how this has been in your life? 'Cause parents are sometimes asking us, so I work in an adult substance use treatment program and I work in a child and adolescent psychiatry clinic or inpatient setting and I go back and forth.
So parents are asking us sometimes, "Should I tell my kids about this? What should I tell them? How much should I tell them? When should I tell them?
What's the right age to tell them? Should we talk about it, should we ignore it? If I tell them, is it gonna make it more likely, is he gonna make it less likely?" We don't really have good research for these questions.
So we wanna help contribute to that by starting this study. So we've built sort of a nine session family intervention. We're gonna help a family tell their story. We're gonna help a family focus on resilience.
We're gonna help families understand heritability in a way that's educational, destigmatizing, but not prognostically pessimistic. I keep coming back to that. And we're gonna focus on resilience and strength and assess wellness and attitudes about substance use before we do this and after we do this. These are things that we need to keep working on to sort of think about.
So that's my sort of child psychiatry perspective. The references are here for most of this stuff. And thank you guys so much for listening. (audience applauding) - Thank you so much, Dr.
Jackson. So we're gonna take about 10 minutes for our questions and answers. I'll try to balance questions from in the room with questions from the virtual Q&A. So for those of you in the room, you're welcome to just come up to one of the microphones to ask your question and I'll start out with a few to get us rolling.
Can you start by telling us a little bit about how you address SUD stigma, specifically in your work with teens and then with their families as well?
- Sure. Yeah, I guess, so I think one way we can do that is sometimes I'll introduce, when somebody comes in, I'll just lead, I guess, first, person-centered care and sort of like, "Tell me about yourself." That's obvious, but let me hear more about you. Let me connect with you on the level of a human being.
You've all probably seen the motivational interviewing texts. The beginning of that book, the sort of primary text I think is chapter two, "The Spirit of Motivational Interviewing." Like if we don't lead into substance use treatment in the spirit of "I'm a human being, you're a human being, we're a team, like let's work together and let me help you find your reasons for change," then it's hard for us to have stigma. I will sometimes, when somebody comes in and says like, "Yeah, I've had dirty urine drug screens for like 10 years."
I'll just pause for a minute and I'll say, "Thanks for sharing that with me. It sounds like this has been difficult. I just wanna let you know I'm gonna try really hard not to use the word dirty when we talk about urine drug screens because I don't think this condition is something that's dirty. And here's why we shouldn't think in those type of terminologies."
And let them sort of start in a conversation. So I'll sometimes address terminology with them. And as we, I think those are a couple of things that come to mind, but yeah.
Yeah, can you talk too about how do you see internalized stigma showing up in your patients? Or do you see internalized stigma showing up in your patients?
Almost every time. Almost every time. People will come in and occasionally they'll just say like, "I've just been treated so badly." And then they'll sort of say, and then they'll sort of talk about themselves and they really have taken that on.
There's so much shame, so much embarrassment. And sometimes, you know, people are coming in and they're really nervous about anyone sort of knowing that they're there with us and thinking about. So it's this balance, because any healthcare, we wanna make sure we're treating confidentially and privately, but we don't need to sort of exacerbate the stigma by saying, "And this is extra, extra, extra secret and private." There are strong debates on either side of sort of like medical record privacy, 42 CFR laws.
I think there are good debates on either side of that. But on the one hand, there is a component of additional stigma when we're saying like, "Your medical record is private and if you're struggling with a substance use disorder that's extra, extra private." In a way, we're sort of saying like, "Go to the back," like, "We're gonna keep this quiet and keep this secret." So this is gonna take us some time.
It's gonna take us some time. We don't wanna sort of like, "No, everything's gonna be open because we're destigmatizing this." We don't wanna violate people's privacy. But we have to be careful about that.
And I do see that internalized stigma happening all the time with people that sort of walk in almost like, they sometimes just look like they have not been treated well and that they've stopped treating themself well, yeah.
- Thank you. Do you see that kind of stigma either from practitioners or from patients themselves around medications for opioid use disorder?
- Yeah, yeah, that's getting better. I think that's getting better. Particularly treatment for opioid use disorders. And I know we have a sort of mixed audience.
I know there are other talks particularly about this. I think it's getting better over time. To prescribe buprenorphine, somebody decided we were gonna call it an X waiver to prescribe buprenorphine. Like why did we call it an X waiver?
Scary, bad, dangerous, need more training, caution. An X waiver. So these type of things. And as we know, like now you can prescribe buprenorphine and you don't have to go through all the training, you still have to get a waiver, but we've done some of this to ourselves.
We've done some of this to ourselves with those type of things. But we see, what was the first part of that question again?
- Just within patients themselves or within practitioners, is there stigma around the medications themselves? So maybe among the patients, do you see that as well?
- Yeah, and that's really gotten in the way of a lot of people. I think we need to be careful, we need to meet people where they're at. When I think of treatment of substance use disorders, we think about there's therapy, there's medicine, there's other. I kind of think of in at least three boxes, I sometimes will draw up a diagram.
I'm like there's therapy, there's medicine, and there's the other box and the other box is the most fun. But if we're thinking about therapy and medicine, that medicine box has sometimes really been stigmatized. And so people need a lot of education. People need a lot of help thinking through that.
Families need a lot of help. But the pharmacology behind buprenorphine, for example, is really useful to kind of talk people through that 'cause a lot of providers, I think less so with providers, we're doing a good job, I think, getting the word out to other providers. But they'll say like, "You're just replacing one drug with another drug." Like you're just their drug dealer now and you're getting the money for being their drug dealer.
That's really hard. We have so much good science and so we just need to think through this and be thoughtful and explain to them sort of the science that we have behind it on why medications can be so helpful.
- Yeah. Go ahead.
Thank you, Peter. I just want to point out, my name is Chuck Montiadi, I work in a outpatient clinic here in Rochester. But I think one of the most stigmatizing things that has happened is something that we've done to ourself as a field. I hate the expression "behavioral healthcare" and here's why.
It's buying into an illusion to the work that we do as treating people that behave badly. If they stopped behaving badly, they would stop having these problems.
And it also sets the field apart from other healthcare fields. It allows our field to be marginalized financially, physically. I literally work in a basement office, so (laughs) you were not exaggerating when you said that we live in the shadows.
That's my canard.
- Yeah, thank you so much. Yeah, I think behavioral health was initially a way to try to get away from the stigma around psychiatry. And so we're sort of running around and chasing around and this is impacting us as providers and that's hopefully what we've added a little bit in this talk is sort of recognizing how we can try to address the impact on us, not to be selfish, but just to recognize like we've got a lot of work to do for our own selves as well. Thanks for sharing that.
Thank you. What advice would you give to new providers to help them gain confidence in their focus on substance use disorders as they manage the courtesy stigma that you talked about?
- Hmm. I feel like I sort of am a new provider still. So like I feel like I'm talking to myself a little bit. (paper rustling) I guess just one of the things that was mentioned in those William White Papers is sort of that if there's a lot of internalized stigma, yeah, this might be an odd answer, but one thing that comes to mind right now is sort of taking a balanced approach to our role in the world.
Because one thing that can happen with stigma is sort of that polarization like, "Oh, you must have been bad in med school. You must have almost failed med school," or like, "You are such a hero." And trying to find a little bit of a balance because if we go like, "We are such heroes," then we're at risk for a lot of other things to happen and not just like hero pride, arrogance, but sort of like, "We're gonna rescue this, we're gonna change it all, and we're gonna be able to." So I think kind of finding that balanced approach maybe and just seeing this as like, this is a really wonderful part of healthcare in general.
This is a really wonderful part of just care for families in general. And move forward and not feel, try to avoid that polarization like that I'm different or I'm sort of othered or I'm weird because we need, if the chair of medicine and the chair of surgery and the chair of psychiatry, like we need all of these people to come together and be at the same table. Not like "I'm a hero and you're this and you're that." So maybe just sort of trying to not get polarized in either direction or other directions is probably some good advice for me and for all of us.
- Sounds good. Why do you think there isn't more knowledge about the neuroscience and social science around SUDs? And do you think that should be a more prominent part of messaging going forward?
- Yeah. I think there's probably not more out there about it because there's probably not a lot out there about substance use in general. Like we don't talk about that because we don't talk about substance use that much. With the science piece, I think it's like super fun to try to find a way to take science, to take research, and get water to the end of the row, to like bring science and research down to something that feels more clinically applicable, that feels more practical, that feels more explainable.
And so I don't think we have enough people doing that in all of medicine. That's just my own personal bias. Like we have amazing researchers and we have clinicians and there's not enough time. Like the main journals, in all of our fields, the main journals, like, that information doesn't get down to clinical care often enough across all of medicine.
And I think that's just exacerbated by stigma around substance use disorders. But again, a caution, as we're trying to explain the neuroscience, I'll sometimes ask a kid or a family like, "Do you like science?" Before I dive into like, "Let me tell you some stuff that I hope is gonna be destigmatizing for you." We have to be careful.
A, I don't have to know why it snows, I just have to shovel it. And B, we can't explain this in a way like, "Your brain has a problem," 'cause then they're like, "Aw, my brain." So I don't know, some thoughts on that.
- Great. Can you tell us what's the most rewarding part for you working specifically with rural communities?
- I think it's a similar part that's the most rewarding with working with anyone in any community, but it's probably exacerbated and amplified for people in rural communities is that just that they've been sort of left struggling and been without help for so long. And for somebody to walk in, I hope, I'm not here to say like "I have achieved decreased stigma for myself," or like "We as a program have officially eliminated stigma," but I hope when they walk in and meet with us, they just feel like pretty similar to what they would feel like if they were walking into the dentist or their primary care.
I think the most rewarding thing is to have somebody who has sort of been on the outskirts, who has been sort of outside, is to walk in and have somebody sit down. And again, not in this sort of like, "I'm gonna be the hero," but just in this regular, like, "We're here to talk about some of your health and wellness." And to have people experience that and feel like, "Wow, there's help for this. I never really knew.
I always thought I was just character flawed." So I think that is amplified sometimes for individuals in rural communities. But I think it's, to me, it's something that's rewarding. And just watching somebody get back to an aspect of their life that they weren't able to do before and something that they really love.
- Great, thank you so much.
- Thank you, everybody, hope you.
Peter Jackson, MD
Assistant Professor of Psychiatry, University of Vermont Larner College of Medicine