What happens when we fail to “do no harm”?: Clinician Associated Traumatization
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Kara Wada, MD: Welcome back everyone, and welcome to our new listeners to the Becoming Immune Confident Podcast. My name is Dr. Kara Wada. I'm a board certified pediatric and adult allergy, immunology and lifestyle medicine doc and Systemic Sjogren's autoimmune patient. We love welcoming amazing guests within our community to bring you more information and background into these really important and nuanced topics, and I am so excited to welcome
Dr. Colin Halverson. He is a professor of bioethics and medical anthropology just across the state line at Indiana University. And his research really focuses on improving the care of patients with rare diseases. And the way we've connected is Dr. Colin published a paper recently that was entitled "Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes". So looking at this idea of what we may in day-to-day language called medical gaslighting, but really looking at it in a more rigorous fashion.
So thank you so much for taking time outta your busy schedule, Dr. Colin for joining us and having this conversation today.
Colin Halverson, MD: Of course. It's a pleasure to be here. Thank you so much for having me. I'm very excited to share some of my research.
Kara Wada, MD: Awesome. Maybe we can start off, can you explain to us what is bioethics and what is medical anthropology?
Colin Halverson, MD: Of course. I have a doctorate in anthropology, and so that's where most of my training has taken place. But then I did do post-doctoral fellowship in Bioethics at Vanderbilt, and I did pre post Fellowship at Chicago, also where I did my PhD. So medical anthropology, I'll start with first because chronologically that's how it works for me.
Anthropology is a study of culture broadly and very broadly. It can capture almost anything. . Got into anthropology first by way of linguistics. And so my initial interest was how do people think about communication? How does culture affect the way that we talk to each other?
And as I started doing my research at Mayo Clinic, I got really interested in the kind of breakdowns in doctor patient communication, especially in the space of rare disease. And so medical anthropology allowed me to think critically about the role of cultural presuppositions in how the culture of medicine informs the way that clinicians think about and talk to their patients.
And I interned with patient education while I was there, and that was also very informative for how I think about these issues.
Kara Wada, MD: So really thinking about that bridge and that exchange of information that happens within the exam room and how I'm just even thinking back to my training, we were talking a little bit about how I've really reflected recently in how much the training process and the enculturation that we undergo within that training process, changed my ability to express emotion.
I'll never forget as an intern being essentially reprimanded because I was spending too much time with a patient who was really deeply suffering and having trouble communicating as a patient who had cerebral palsy and she was incredibly bright, but her ability to get language out, just took a little more time. And so for her to be able to share her symptoms took more time to get that history and to communicate with her. And it's repeated episodes of that time and time again that really do change how you interact with other humans and they're suffering unfortunately,
Colin Halverson, MD: I think that's very true and it is both probably a necessity and a real shortcoming of the medical education process.
Kara Wada, MD: Yeah. There is this whole element you shut down to survive that trauma response type idea. Then if you have that on the other side, on the patient side of things we're not helping each other. We're both shutting down.
Colin Halverson, MD: Yeah.
Kara Wada, MD: So where does then the role of bioethics come in?
Colin Halverson, MD: For me, it came in pretty quickly. The linguistic research I was doing in the anthropological research I was doing, shortly, it became impossible to disentangle from the issues of the political stakes or the sociological stakes for the patients I was working with and for the clinicians.
And the thing that was most interesting and startling to me was the idea of communicating complex information to patients who didn't have the background to understand it and how clinicians started thinking about simplifying the language and what it meant ethically to provide less information to the patient than the clinician had, and how you could do that appropriately and what it meant for the clinician to project what is relevant, what isn't relevant, before the patient even hears anything in the visit.
Kara Wada, MD: So that, the clinician being the one to determine what's filtered and what would then be appropriate or not appropriate, based on maybe the lenses they see the world through or their preconceived notions or what have you.
Colin Halverson, MD: Exactly. And so that's what took me to ethics was a bad series of questions. And since then I've gotten more and more involved in ethics. That is my primary appointment at the moment in medical ethics.
Kara Wada, MD: So I always find it fascinating when when I put my patient hat on and I am engaging and with the patient communities, especially in rare disease communities where many times the patients know a lot more than their clinicians. And that kind of turns that idea upside down. Then it is about, yeah. And thinking how the clinicians then respond to that as well.
Colin Halverson, MD: So yeah, really interesting and just startling things from what you just said. On the one hand, the burden it places on these patients and their families to do all of this research on their own.
I have talked to some people who've literally gone on to get doctorates after a diagnosis in order to understand what's going on. But that's a lot of resources to be able to do that. If you don't have those resources, you still have that burden to be able to explain something and to the point where you know more about, say, your response to anesthesia than your anesthesiologist does.
You could be in something at least close to a life or death situation if you're not able to share that in some way that the clinician will take up as knowledge, as your own form of expertise. And that's the other side of it, which is how do you present yourself?
How do you present as a patient? How do you present yourself and your knowledge in a way that a clinician is going to take seriously, not get territorial about those kinds of issues too.
Kara Wada, MD: Yeah. I've heard many anecdotes from patients who have told me stories that, "oh, told to stop Googling or, stop doing my own research and I don't think that's the answer. I've taken just saying I think medicine is a team sport. We all have to participate to the best of our abilities and stay curious. But sometimes it's hard given some of the constraints that we have too.
As you've done research, we mentioned in the intro about rare diseases. What does it mean for a disease to be rare?
Colin Halverson, MD: So according to the Orphan Drug Act rare disease is any condition that affects fewer than 200,000 people in the United States.
The stats suggest there's at least 7,000 rare diseases, and the number of individuals with some rare disease is astronomically high.
Kara Wada, MD: So that thing that we're taught in medical school, which is if we hear hoof beats to think of horses not zebras, that may be true to some degree, but if you think about all the different species of hoofed animals or rare diseases out there, they're mixed in with the horses all over.
Colin Halverson, MD: I think that's fantastic. Yeah. There are lots of different species of zebra. And I think that's exactly why a lot of patient groups, especially the group that I work most closely with Ehlers-Danlos has taken the zebra as their mascot.
Kara Wada, MD: Can you share a little bit about Ehlers-Danlos I know it's something that's covered in medical school, but I graduated like 13 years ago, so it's been a minute. It was the types that were taught to me were the very severe and the rest were brushed off. But a lot has evolved in the last 10 plus years.
Colin Halverson, MD: So in 2017, they published, one of my mentors included, new diagnostic criteria for the Ehlers-Danlos syndromes. There are currently 13 all but one of which have an associated genotype.
The most prevalent and the one that I have to this point worked most closely with is Hypermobile Ehlers-Danlos syndrome. That does not have a known genetic component. However, there's research currently underway. And so that's diagnosed through a robust set of clinical criteria that came out in 2017.
The Ehlers-Danlos syndromes in general are connective tissue disorders. They are considered rare, although I know that plenty of people on the hypermobile side don't feel that their type of EDS is rare. And it certainly is an increasingly common referral to clinics . Hypermobile, I think it's unfair to say is not a severe type, but I think that's probably how people are trained.
The primary symptoms of hypermobile Ehlers-Danlos are chronic pain, chronic fatigue hypermobile joints, a lot of dislocation, subluxations. And I think that's probably how most people are trained to recognize it today.
Kara Wada, MD: Yeah, I think that's a really good clarification to what I said earlier. And, I think my mind goes to, there's another form that just stands out that causes a lot of difficulty with blood vessels and can cause blood vessel aneurysms and so that tended to get the lion share of the educational time as a med student.
But the reality is and knowing patients and colleagues and some friends who are affected by Hypermobile Ehlers-Danlos, that it really can be incredibly impactful on someone's day-to-day life and functioning. And the symptoms that they have dealt with that for probably vast majority of folks and vast majority of their lives have been brushed off which breaks us to this idea of clinician associated traumatization. Little segue.
Can you maybe share a little bit about your research paper discussing this phenomenon that occur and was discussed within the Ehlers-Danlos community?
Colin Halverson, MD: Definitely. So I started at IU as faculty about four years ago and right around the same time one of my mentors joined the faculty as well. Serendipitously, both of us, she specializes in hypermobile and connect tissue disorders and especially hypermobile Ehlers-Danlos. I had been dreaming of working with this population since grad school. And we got together and did a series of interviews and built a cohort of 40 some individuals with clinically diagnosed hEDS. And I've been following that group with a number of other interviews and surveys over the course of the last four years. In the first set of interviews, I talked with them broadly about what in the rare disease community they called the Diagnostic Odyssey. So the course from the first onset of symptoms or when symptoms first become troubling to actually getting a diagnosis. I did a large survey recently of the international registry for Ehlers-Danlos and it's 10 point something years on average for a patient to get a diagnosis.
No, it's not surprising. And it is still horrific still. And so I think that's definitely something to keep in mind as I explain a little bit about my work on Clinician Associated Traumatization because there's a long time for negative encounters to compound before a patient actually gets the answer they need.
And so one of the things that kept coming up in these initial interviews was all these negative encounters they'd had with clinicians. All this dismissal, all this invalidation. And in conversation with my mentor, it became pretty obvious that the next step for us should be to investigate what exactly is going on.
One of the things people regularly mentioned was having a PTSD diagnosis as a result. And then in the same survey that I mentioned, we found, I think it's something around 30% of patients have been given a PTSD diagnosis, patients with hEDS, so it's a very significant percentage.
I'm not a psychologist, so I consulted with a bunch of folks from psych in trying to understand how to think about these patients' experiences and definitely I'm absolutely believe, trust the PTSD diagnoses for the patients who described that. But all of them, even the ones who hadn't been given PTSD diagnoses seemed to be having some kind of trauma response to their clinical encounters. And so that was the purpose for doing this set of interviews and surveys.
Kara Wada, MD: You also described this concept that's been in Diagnostic Statistic Manual of Mental Disorders. The DSM is this essentially big book that psychiatrists and psychologists use to list of different diagnoses and what those clinical criteria are. But medical trauma has been enlisted as part of this for a little while, but my understanding is that typically has been related to an intensive care type experience or a bad car accident or something that is more of a one-time life-threatening type occurrence.
And what you were trying to describe and discuss was something that was a little bit different, a little more kind of outpatient, pervasive on the whole?
Colin Halverson, MD: I think that's a great characterization. So after we did the interviews and I was looking back at them and trying to see whether PTSD would fit as a way of describing these patients experiences, it definitely seemed like that was insufficient in order to capture everything that I was interested in.
And again, that's not to say that some people did not have life-threatening encounters that did lead to PTSD medical trauma. But if you think the classic example of medical trauma, it's someone waking up in the middle of surgery or something in that effect. And that really felt very, not just insufficient, but really off base from, I think the interpersonal dynamics that I saw as really the source for a lot of the trauma I was witnessing in these interviews.
And so we came up with the idea of the construct of Clinician Associated Traumatization specifically in contrast to that saying that " This is not coming out of a brush with mortality per se" that "This is the cumulative result of these negative interpersonal dynamics".
But despite that difference, you see a lot of the exact same trauma responses or the kind of classical criteria for PTSD in these patients, regardless. And so those are things numbing to triggers , or like avoidance, where people are actively avoiding clinicians or actively avoiding medical care altogether. As what psychologists call hyperarousal. And high affect where people are very anxious or worried or upset or sad as a result of these encounters. And then also this sense of intrusive thoughts or flashbacks where the vast majority of the patients I've spoken with can vividly recall one or a small set of discreet negative encounters that they feel are particular sources of stress for them in an ongoing sense.
Kara Wada, MD: Earlier this year, I did like a continuing education course on essentially on trauma and how to become more trauma informed and how to mitigate trauma. But what I think was one of the most startling things to learn is that, everyone in one way, shape, or form, experiences trauma at some point in our lives, but also whether we are the direct recipients of a physical trauma or we on the other side of things experience trauma vicariously.
So hearing our friends or family share something traumatic or we witness a family member go through something traumatic that given the context, if we don't have the support network and the resources and things to help support us, the time to process that it all is experienced by the brain and the body in the same way.
Not one isn't worse than the other. The trauma is trauma and so I think it's really important when, you're developing this language for us to explain what so many people have experienced and bring the language and the words so that we can accurately describe what they've been through and to recognize and validate that experience.
My hope is this is the first step that we have in then bringing light to it so that we can work to prevent this from happening in the first place.
Colin Halverson, MD: Definitely. I absolutely see this as just a first step. There's a lot more research and there's a lot more implementation. There's just implementation period still to be done.
It was a hard series of interviews to conduct. There are a lot of very sad stories, but there are also uplifting moments as well where patients described things that helped them in managing these types of things. And having trauma-informed clinicians I think would be a wonderful benefit not just for patients with Ehlers-Danlos syndrome, but in general.
But again a very unfair burden falls to the patient where I think a lot of a lot of patients feel like that's not something they can expect from their clinicians. So simultaneously seeking out good clinicians, which is an enormous amount of work and entails a lot of emotional heartache as well, but also trying to find things that can help that patient process the trauma that they have accumulated over the course of their diagnostic odysseys which is also real labor on the part of the patient...
Kara Wada, MD: and cost. Potential need for therapy or other treatment that may be required.
For those maybe who are newer to this idea of clinician associated traumatization or say layperson terms, medical gaslighting. What are some of the recurrent themes or types of behaviors that you heard in these conversations with with the patients you're speaking with?
Colin Halverson, MD: So I think the first thing I wanna say is I have seen that people are taking this up as medical gaslighting, and I think that's definitely a part of it. But I also want to be clear, I think a lot of people when they hear medical gaslighting, they're like you have hurt feelings, or you were invalidated.
One of the things that we tried to do with the paper, and I think we did succeed with plenty of evidence, is very true and that's also real harm. But there are also medical harms that arise immediately out of the clinician associated traumatization. And some of these are like, I feel pretty logically straightforward.
Patients who experience all of these negative encounters, stop seeing particular clinicians or develop a broad aversion to medical care altogether. If patients with chronic pain or frequent dislocations, et cetera, aren't being seen by clinicians, that's fairly obvious how that can lead to actual physical harm.
The other aspect of being dismissed as like we were talking about before, having your own kind of expertise or potentially even understanding your disease better than the clinicians you're seeing is you could put yourself in the hands of someone who completely unknowingly and certainly not unintentionally could harm you.
I heard many stories of patients going to chiropractors or physical therapists who were not familiar with what it means to work with a patient with connective tissue disorder who ended up doing more harm than good. The gaslighting aspect of it is really significant, but also I think it's critical to see how and I think this is potentially powerful and particular for clinicians.
This type of behavior that accumulates over the course of a diagnostic odyssey over the course of extended care leads to worse patient outcomes too...
Kara Wada, MD: and delay in diagnosis. If you stop going to see clinicians, understandably given totally self-protective, but that then delays the accurate diagnosis and potential treatment for what you have.
We see that unfortunately commonly Many times in common variable immune deficiency, which is something I see pretty often that there, it's another condition where, "Oh, it's just a sinus infection", or brush things off. You're just tired for whatever reason, or you're just asking for antibiotics. No. You actually do need them in that case. But there is absolutely that potential for real harm. We see that too, I do some work, like some administrative work with the hospital. And essentially when there are poor performing teams or poor behavior within teams or from physician leaders, much poorer outcomes in patient care overall. From increased surgical site infections to even potentially death in the case of like patients on a trauma service that isn't functioning well or that someone has rude behavior even. It doesn't surprise me to hear that you're seeing it in the data you're looking at as well.
Colin Halverson, MD: And I think that's a really powerful point too about the avoidance aspect of this . In our study, 85% of individuals were immediately able to recall a specific or a small set of specific encounters that had led to an increase in stress in their lives. A hundred percent of them were able to generally say that they'd had these types of negative encounters.
And that's a biased sample. That's a sample biased towards clinicians because we recruited from clinic. So every single person I spoke with is still comfortable enough with the medical system to attend, even with all of their reservations, even with all of their worries or distaste. And so if we had sampled in a different way, you can't get higher than a hundred percent, but still very different stories.
Kara Wada, MD: In addition to showing up in that clinic, they were, they listened to your consent process. They showed up to the conversations and whatever extra time and effort that took. There's a lot that goes into being a participant in research. Just to add even more credence to that point.
Colin Halverson, MD: And then you'd asked earlier about what types of experiences I heard. There were, some of them really were horrifically shocking and I think sensational enough that it's not necessary to go into all of them. But some of the things I think are probably more relevant for clinicians to hear because I do think you hear some of the stories and no one in their right mind is gonna be like that clinician was probably in the right.
But there are some, there are plenty of cases because like I said, this is a cumulative process where you can certainly imagine a well-intentioned clinician going into the encounter and even leaving the encounter and thinking, " that was fine I did the, right thing. Nothing went wrong." But there are these small invalidations things like downplaying the patient's symptoms, downplaying the patient's need for special care or mobility aids, stuff like that can be very harmful.
Talking about the patient's looks in a positive manner. Similarly can feel very dismissive. And these are things I think clinicians, if you're being charitable, engage to make the patient feel better, not worse.
Kara Wada, MD: Yeah, the intent is good, but the impact is not.
Colin Halverson, MD: Yeah. So that's some of it. And I think those types of micro interactional or like small scale issues build up and it's important for clinicians to raise their awareness of how those things impact patients who have a chronic disorder. But then other things that I regularly heard Again, these are more obvious, but like a lot of disrespect, a lot of invalidation where patients are just flat out told," No, you, you don't feel that bad. There's no way you feel that bad. You're not actually in that much pain".
I heard about clinician's calling child Protective Services when parents are bringing their kids around too often for chronic issues. And then the other major thing that I heard that I think is worth mentioning for clinicians who might be listening is the sense of abandonment that patients feel when they're told there's nothing else that the clinician can do.
This is one of the things, I have a student right now working on looking at the role of medical genetics for hypermobile Ehlers-Danlos syndrome, because as I said earlier, there isn't a known gene associated with hypermobile Ehlers-Danlos at the moment. But there is still a huge number of patients with suspected Hypermobile Ehlers-Danlos who are coming to genetics.
And so the question is, What is the role of medical genetics in providing care for these patients and in making referrals to other types of clinicians? How do you not give up on or allow the patient to feel like they've been given up on.
Kara Wada, MD: Oh gosh, that, that hits home. So an overlap in what we'll see or seem to see more often in patients with Hypermobile Ehlers-Danlos and with sjogren sometimes is mast cell issues or suspected mast cell issues. And it's an area that is still fraught with some controversy within our field of allergy immunology. There are some diagnostic criteria for particular types of mass health disorders, but this doesn't explain the lived experiences of many of these patients and to the clinicians' defense a little bit, we don't know for sure that all of the symptoms described are attributed directly to these particular immune system cells called mast cells, and it may be related to something else. We don't have that fully burst out. That being said, so often these patients are just given like the brush off, or I call it like the hot potato treatment of like passed off to the next specialist. And so it is all too often hearing that abandonment. And there's sometimes our times that come where I am at a bit of a loss is, " okay, what do we do next? I'm not exactly sure, but let's touch base periodically. Let's stay in the loop" so that if or when things change from your standpoint, how you're doing and or the science, we're still communicating and doing the best we can with what we have. I don't know that's the best way to do it or not, but that's what I'm doing. That's best of my ability.
Colin Halverson, MD: It sounds good to me.
Kara Wada, MD: Just like making it so we're making it,
Colin Halverson, MD: With complex diseases like Ehlers-Danlos, there's so much coordination of care that's necessary. And I've had so many patients describe their experiences with the medical system as quotes, "a full-time job". And it's not even hyperbolic for a lot of these patients. And so much of that is self-advocacy, which is its own kind of critical burden for all kinds of reasons that we've already talked about. Also, just the time burden, patients who are traveling literally across the world to get appropriate care and diagnosis.
So it does put a lot of emphasis on the need for some clinicians to be helping carry some of that weight for the patients, even if they potentially aren't the primary home for that patient in terms of immediate care.
Kara Wada, MD: I think what is challenging from the reality of living in a capitalistic society is that the competing priorities that come up within the medical system, right?
As a physician, we take our oaths, do no harm, and try to show up and do the best we can for the patients that we train to take care of. But then and I feel incredibly fortunate in the position I am that I don't feel as much of these strains as many others do, but then are trying to increase the speed of the conveyor belt to get more people through. Cause that's what makes more money and these complicated clinical, it just, it takes time. It takes thought, it takes coordination. It takes a lot of prior authorizations with insurance and extra nursing and administrative health from that standpoint. That's what I think is going to be a huge challenge for us as a society to grapple with.
Colin Halverson, MD: I deeply appreciate the issues that you've brought up with insurance and the time constraints that could be artificially placed on clinicians. The drive, the various drives to see more patients rather than spend more time with fewer patients.
The other thing that I think is also an insuperable problem, I don't know how you really deal with it, is there are not enough specialists. There are not enough genetic counselors. There are not enough geneticists, there are not enough rheumatologists, there's not even enough primary care physicians.
Kara Wada, MD: Yes. We see this so much right now with dysautonomia. Again, another overlapping type condition, but there's no one within the Columbus area that has a real specialization in helping these patients. And the numbers of folks experiencing this were already underserved within the EDS population that, like kind of these conditions that have overlapping issues, and now with long COVID, it's let's just add a few more million to the mix. For specialists, it's over 18 months long.
Colin Halverson, MD: Yeah. It's true with with a lot of the patients I've spoken with in terms of their diagnostic, they get a little glimmer that maybe this is gonna be the answer, but then they still have to wait a year, two years, even more, to see a specialist who can actually sit down for long enough with them, go through all of their history, all of the exams and give them the answer that they actually have been waiting for.
Kara Wada, MD: And increasingly too, you see sometimes the clinicians that are able to do that are sometimes working outside of the insurance market and so that again, is another added expense sometimes as well.
Colin Halverson, MD: So last year, I did a study on the use of complimentary and alternative medicine with the Hypermobile Ehlers-Danlos cohort and unsurprisingly, if you feel like you have been dismissed by biomedicine and you've given up on it, or if you feel like the options that biomedicine presents are dangerous or insufficient, unsurprisingly, people are turning to these alternative approaches to managing the chronic pain that they deal with oftentimes daily.
And insurance is such a problem in that space. And it's just yet another aspect of the burden that falls on the patient in the way that we've structured a healthcare system to manage something relatively indefinitely since it is a chronic condition.
Kara Wada, MD: I'm thinking about even my own experiences with Sjogren's, there's a fair bit of body pain that I deal with kind of in connective tissue type stuff. Less of the hypermobile, more of the, I need to be more mobile. But cost of massage that's out of pocket or moisturizing products for the eyes and the nose and with each of these conditions there comes its own ongoing upkeep.
The upkeep of a fancy sports car and having to fill it with the expensive gas.
Even though sometimes you feel like it's functioning at the level of that old Corolla
I saw a meme like that earlier this week, so I can't take full credit for that metaphor.
Thank you so much for shedding so much light. Bringing more awareness and more kind of critical thinking to how we are approaching our interactions as human beings. How we can, ideally, the medical system is there to help people heal, not to inflict more harm.
And so thank you for taking these initial steps in getting us hopefully to a place that is more informed, more aware, and hopefully using that to eventually change behavior too. If it's okay, I think what we will do for sure is the article is still available. I think we're downloading so we can link to the article in our show notes as well that we've been talking about.
Dr. Colin, if you have some others, that would be helpful, I'm happy to put those there too. And then if people wanted to connect with you, are you on social media? Do you tweet?
Colin Halverson, MD: I am technically on Twitter. But I haven't been on it, I don't think in probably four months.
But you can find me. I do tweet out when I have new publications and that's basic.
It's @colin_halverson. You can also reach me at my work email, which is [email protected]. And I'm happy to talk with folks about their experiences. The article is Open Access, so you can download that for free.
Kara Wada, MD: Awesome.
And I have to give like a random shout out to I don't know if you followed Dr. Glaucomflecken. He is an ophthalmologist. His real name is Dr. Flannery. But he makes some pretty strong commentary about the need for more open access journals so that, there's access to all of this academic work that's being done because putting it behind a paywall is not helping serve our patients.
Colin Halverson, MD: Thank you so much for the chance to chat with you. This was absolutely lovely. And thanks for helping me get this research out there.
Kara Wada, MD: Thank you so much.
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