Subscribe to The Podcast by KevinMD. Catch up on old episodes!

Join Jillian Rigert, an oral medicine specialist and radiation oncology research fellow. In this episode, we delve into the world of eating disorders, drawing from Jillian’s unique perspective as both a patient and a health care professional. We explore topics such as maintaining hope during recovery, the impact of diagnostic terminology, the need for increased research funding, and the challenges of eating disorder treatment.

Jillian Rigert is an oral medicine specialist and radiation oncology research fellow.

She discusses the KevinMD article, “Words of caution when considering the use of ‘terminal anorexia’: perspective from lived experience.”

Our presenting sponsor is Nuance, a Microsoft company.

Do you spend more time on administrative tasks like clinical documentation than you do with patients? You’re not alone. Clinicians report spending up to two hours on administrative tasks for each hour of care provided. Nuance, a Microsoft company, is committed to helping clinicians restore the balance with Dragon Ambient eXperience – or DAX for short. DAX is an AI-powered, voice-enabled solution that helps physicians cut documentation time in half. DAX Copilot combines proven conversational and ambient AI with the most advanced generative AI in a mobile application that integrates directly with your existing workflows. DAX Copilot can be easily enabled within the workflow of the Dragon Medical application to bring the power of ambient technology to more clinicians faster while leveraging the proven and powerful capabilities used by over 550,000 physicians.

Explore DAX Copilot today. Visit https://nuance.com/daxinaction to see a 12-minute DAX Copilot demo. Discover clinical documentation that writes itself and reclaim your work-life balance.

VISIT SPONSOR → https://nuance.com/daxinaction

SUBSCRIBE TO THE PODCAST → https://kevinmd.com/podcast

RECOMMENDED BY KEVINMD → https://kevinmd.com/recommended

GET CME FOR THIS EPISODE → https://earnc.me/MnRZzy

Powered by CMEfy.

Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome back Jillian Rigert. She’s an oral medicine specialist and radiation oncology research fellow. Today’s KevinMD article is “Words of caution when considering the use of ‘terminal anorexia’: perspective from lived experience.” Jillian, welcome back to the show.

Jillian Rigert: Thank you so much for having me, Kevin. Of course, I have to thank you for your tremendous platform. It’s been an incredible growth opportunity and healing place that creates a community where many of us can share our heart and soul.

Kevin Pho: Fantastic. And I know you’ve come a long way, we were talking offline, and you have your own podcast now. How’s that been going?

Jillian Rigert: It’s good. Of course, if people appreciate my sound quality, that’s thanks to Kevin, after he shared what type of microphone I should get when my acoustics were poor last time we talked. So very deeply appreciated.

I have a YouTube channel called A Life True to You, which is helping people to create a life that’s really true to them, which is something you do fantastically, showcasing that we’re not just our career titles, and freeing ourselves from societal pressures that lead us astray. So, A Life True to You on YouTube, come find us.

Kevin Pho: So go to KevinMD.com/podcast, you can search for Jillian’s prior episodes and hear her story. But today we’ll get right into your most recent KevinMD article, “Words of caution when considering the use of ‘terminal anorexia’: perspective from lived experience.” Now, for those who didn’t get a chance to read your article yet, just tell us what this one’s about.

Jillian Rigert: Yeah, so my article was in response to a new terminology that’s proposed. It’s called terminal anorexia. And it was proposed with this concept that there are some patients that have anorexia that get to a point in their life where you have to consider end of life care.

And the authors were trying to create characteristics for this diagnosis, per se, which is not a diagnosis at this time. But when I was reading the article, it was one year out from when I would have met their criteria as a patient for having what they called terminal anorexia.

And there’s four criteria. You have to have a diagnosis of anorexia nervosa, of all the eating disorders. You have to be over the age of 30. You have to have had previous high quality care. And you have to have consistent commitment to say that I don’t want any more treatment, that treatment would be futile, and accept that your death is most likely going to occur as a result of medical complications from malnutrition.

Kevin Pho: So tell us some of the issues and concerns you had about this paper after reading that.

Jillian Rigert: Yes. And I’d like to call to attention, there’s another patient with lived experience who has written an article in response. His name is Alykhan, his last name is A-S-A-R-I-A, and that’s in the Journal of Eating Disorders. And I mention that early because he’s really gone into detail talking about the problems with these four criteria, and I completely agree with everything that he says in his articles.

But briefly, for a diagnosis of anorexia nervosa, you can tell me your exposure, the education that we get in medical training is very limited. And it’s still, like, in the prompts for boards, it’s still this adolescent, cisgendered, Caucasian female who gets like a stress fracture, hasn’t had her period in a long time, right? That’s the very stereotypical type of vision when we think of eating disorders. And you can share with me, what has been your exposure with education on eating disorders?

Kevin Pho: No, it’s exactly what you said. I think that the scenario you just described could have come out of any board book.

Jillian Rigert: Yeah. And at some points in my life I was stereotypical, and I think that led to me obtaining, I have privilege from that when it comes to having access to care. But now I’m 35 years old and have a lot more awareness. I’ve been in all levels of care, I had observations and said, something’s not right, we are missing a lot of information when it comes to understanding eating disorders.

And what patients and their caregivers, their parents, don’t know is that lack of education, is that research funding is lower, is that there are a lot of gaps in treatment. And so oftentimes we have these patients who are quote unquote failing treatment, but no, treatment is failing them.

These very superficial beliefs that eating disorders are just fixations on calories and exercise and weight and body image, that’s just touching the surface, and I know that to the depths of my core. So when I was in medical school, it was paining me, and I felt so misunderstood. I ended up going to my institution for treatment, which was indeed life saving for the medical complications.

But when it comes to anorexia, when you are properly nourished and you’re stable from a medical standpoint, that’s just really the beginning, where you can start to feel and start to peel back the layers of what’s contributing to your eating disorder.

And I’ve been to a point that it’s quite scary. People who are caring for a patient that looks like, why can’t you just eat, is something we get a lot. Which, it’s not all about food, but food is part of our medicine, it’s part of the necessary treatment. But it’s scary for parents to watch their children, or spouses watch their loved ones, starve to death and not understand it.

And so I’ve gotten to a point where I was told I wasn’t going to make it, and I know how scary that can be. And it’s quite fascinating, the resilience that a body can have.

So when it came to this article, we’re thinking about use of anorexia nervosa, they use that term, that the patient and the health care professional find that death will be inevitable from this eating disorder. And people have said that to me, and clearly here I am.

And so what wasn’t showcased in this original article I was responding to, it was an article that only brought three cases. So where are all the other cases that met this criteria and survived and maybe are thriving now? So we need to help appreciate that there are many people that have been able to turn their life around who have had anorexia nervosa to the point that nobody thought they were going to make it, and somehow, through the resilience of the human body, they have.

And also, when I was reading the article, so anorexia nervosa has one of the highest death rates of all psychiatric illnesses, it’s often competing with opioid overdoses. And suicide is a concern with patients with anorexia nervosa. So when I first read the article, I was really glad it was a year out from where I had hit that rock bottom, because the article took away hope, and it increased the sense that that patient’s a burden. And those increase a person’s risk to die by suicide.

So that was kind of like my immediate reaction. And anorexia nervosa is interesting in that it often can become an identity for a person, and it becomes kind of like a competitive identity, where, I have an article on your platform showcasing why BMI is a problem, because patients often don’t think they’re sick enough. So if they’re gravitating towards this new term, terminal anorexia, well, some people are going to make that a goal.

And one thing that really stuck out to me in Alykhan’s, the other patient who has the lived experience, articles in the Journal of Eating Disorders, he said these patients with eating disorders need permission to live, not permission to die.

And so that was a long-winded way of just saying, with full out compassion, my initial response when I read the article, and what was going through my mind. Without even going down the age 30, like, what the heck? High quality treatment, well, how are you going to define that? As I share in the article, I went to high levels of care, but that doesn’t equal high quality treatment.

And when you’re malnourished, it creates this sense of psychic pain in your mind, you feel trapped in your mind and body. And at that point you can speak as if you are very clear on your desires for your life, and have this underlying suicidality and hopelessness. And the authors in the article offer that these patients are able to make decisions to end their care, and that’s questionable for me, as somebody who has been suicidal in that state, and knowledgeable enough to say, well, I wouldn’t say that, because they might offer me, if I was in an appropriate state, medical assistance in dying, and that could have been my way out.

Kevin Pho: Can you speculate as to why the authors would coin such a term?

Jillian Rigert: I would hope, compassionately, they were looking for a way that people can reduce their suffering when they’re in the state with their medical comorbidities causing a lot of pain. That would be my hope.

Kevin Pho: And your article got a lot of traction, I saw that was shared many times. Tell me the type of response you received after this article was published.

Jillian Rigert: Yeah, fortunately the only ones that responded had similar thoughts and beliefs. Actually, when I first read the article, I took a year to respond to it, because I want to be very mindful of how I, both for myself and also for how it communicated my concerns.

But when I first read the article, I was fortunate that Dr. G did meet with me, and I expressed my concerns to her. And then I took a step back, and there was a lot of response from people who do study eating disorders as their primary focus, and they gave those types of responses that needed to debate the problems with use of this terminology on patients and their caregivers, and points to the adverse outcomes of the public having access to this type of terminology.

Kevin Pho: You mentioned earlier that a lot of the medical training that we receive on eating disorders is very superficial. You talked about this earlier, but go into more detail. What are some misconceptions, what are some things that medical professionals should know about eating disorders that’s not taught?

Jillian Rigert: Well, there’s huge weight bias in both our society and in medicine. And actually the DSM does a disservice by having a BMI associated with anorexia and utilizing the term atypical anorexia. They’re one and the same.

And so you can’t tell if a person has an eating disorder just by looking at them, that’s a common misconception, the hyperfixation on weight. Oftentimes in medicine, if a person is higher weight, they don’t think that they can have a restrictive eating disorder such as anorexia, which is wrong. And they often think that if you’re getting help for anorexia and you get to a certain weight, oh, you must be all better now. And they’re like, no, that is actually often when we’re suffering the most.

For me personally, when I’m malnourished, I’m pretty numb. And if I’m numb, I don’t perceive myself suffering that much, to an outsider. And I might be saying things, or I might be hyper anxious and things like that, but I’m pretty numb. And so if I allow myself to be in the nourished state, I can feel all the things that are going on, and actually what’s fueling my eating disorder.

It’s often from a place of low self-esteem, low self-confidence. If there’s been trauma in your life, I equate the eating disorder, this may or may not be accepted by all people so I don’t want to generalize, but I’ll just speak from my perspective, it’s like an addiction, it’s like a coping skill.

And so when we just focus on, oh, I’m going to help that person to have a better relationship with exercise and with food, OK, well, but what was really going on underneath? What’s really stimulating this eating disorder?

Kevin Pho: Now, have you made any headway in terms of reframing eating disorders from your perspective?

Jillian Rigert: Yes, absolutely. I love this question, thank you for asking.

In my lifetime, sometimes people say the anorexia is a bully, and that it’s really problematic, and they separate you from the eating disorder. And I realized that was actually creating a challenge for me, because I just felt so trapped, and why would my brain be attacking me, and why would it be wanting me to die and not wanting the best for me?

And I actually realized the eating disorder has been kind of a canary in the coal mine, and it’s been showcasing to me when I’m doing things that actually aren’t in my best interest. And so when it’s coming up for me as, oh, I want to lean into these eating disorder behaviors, I’m like, but what do I really need right now?

So that being that canary in the coal mine and showcasing, like, there’s something going on right now, I don’t feel safe, I’m needing something to help me feel safe and to cope. And so if I’m noticing that I’m having an increased desire to act on eating disorder behaviors, I developed self-compassion, take a step back, and have a curious lens. I wonder what’s really going on for me right now? And that’s really improved my ability to sustain more wellness.

Kevin Pho: We’re talking to Jillian Rigert. She is an oral medicine specialist and radiation oncology research fellow. Today’s KevinMD article is “Words of caution when considering the use of ‘terminal anorexia’: perspective from lived experience.” So Jillian, tell us what you see in terms of the immediate future when it comes to terminology surrounding anorexia and other eating disorders.

Jillian Rigert: I foresee that people are now speaking out about why anorexia and atypical anorexia are problematic to separate, and how they’re something that should be considered one and the same.

And I find that, utilizing terms when we introduce the DSM, I kind of wish I was on the team to help reshape it for eating disorders. We have to be very considerate. I wish that these individuals that published on this paper would have had a forum where they could have talked to other eating disorder specialists and said, can you please tell me what foreseen adverse outcomes you can predict if this were to be published and circulated for public to be able to read?

So I hope that people can be very mindful when considering use of any terms in the DSM, and how it can have adverse outcomes. And not just for eating disorders, but any sort of diagnosis, particularly in the mental health sector.

Kevin Pho: And any resources that you trust that you would like to share in case people want to read more?

Jillian Rigert: I think the patients of lived experience are people that are commonly not heard enough. So I would, especially as I mentioned, with Alykhan and the Journal of Eating Disorders, and other people. For physicians, spend more time listening to the patients. So I think our best resources are the patients.

Kevin Pho: And we’ll end with your take-home messages to the KevinMD audience.

Jillian Rigert: My take-home messages are, throw away all you’ve learned about eating disorders. It’s time to unlearn those and relearn, so that we can take better care of patients. Because patients are not failing the system, the system is failing patients.

Kevin Pho: Jillian, once again, thank you so much for sharing your story, time, and insight, and thanks again for coming back on the show.

Jillian Rigert: Yeah, thank you so much for having me. It’s been a pleasure.