In today’s KERCast, listen as Dr. Victor Montori speaks with Erin Gilmer, a health policy attorney and patient advocate whose work is focused on empowering and educating all health care stakeholders toward the achievement of a more humane, loving system. Erin walks us through the meaning of health as a human right, the importance of trauma informed care at both a structural and interpersonal level, and the role of “gentle curiosity” in acknowledging how past violence and victimization inform patients’ present needs.
In today’s KERCast, listen as Dr. Victor Montori speaks with Erin Gilmer, a health policy attorney and patient advocate whose work is focused on empowering and educating all health care stakeholders toward the achievement of a more humane, loving system. Erin walks us through the meaning of health as a human right, the importance of trauma informed care at both a structural and interpersonal level, and the role of “gentle curiosity” in acknowledging how past violence and victimization inform patients’ present needs.
It's time to start the KERcast, brought to you by the Knowledge and Evaluation Research unit at Mayo Clinic and I am host of the KERcast Victor Montori. Today we have a wonderful, wonderful opportunity, which is to meet and discuss with Erin Gilmer who is a patient advocate and a health policy attorney with a passion for health as a human right. Her work has focused on empowering and educating all healthcare stakeholders on a range of crucial issues, including and particularly trauma informed care, but also health privacy issues, access to affordable medicines, social determinants of health, patient engagement and other topics that are critical to us as we understand how to make health care fit. Erin, wonderful to have you with us today. Welcome to the KERcast.
Erin Gilmer:Hey, thank you for having me. I'm so excited to be here.
Victor Montori:Excellent. So the first question we always ask our guests here is, well, how does one become Erin Gilmer, so how does one get to the point where you are, what's been the journey, and to what extent it's been the subject of, you know, luck, or, or choice?
Erin Gilmer:Um, well, I would say a lot of it has to do with lack of luck, and lack of choice. I honestly came to trauma informed care and to advocating for patients in health policy spaces, because I'm a patient myself. I grew up with a number of health issues and then in my college years actually had some autoimmune diseases diagnosed and continued over time, to kind of rack up some disabilities, until I went on disability in 2013. And so, you know, none of that is lucky at all, but it has given me perspective on, you know, the human condition and the commonalities we face and struggles as well as the inequities we face and given me kind of that drive to want to make the world better. So that's kind of how I came here. Lots of different opportunities to explore different areas of healthcare. You know, whether it be health technology, or again, what we're here to talk about today, the trauma informed care, or things like housing, access to medicine, you know, I've been fortunate to be in a lot of spaces that patient's maybe weren't always included in and tried to help give patients a voice and try to make change for the better.
Victor Montori:And was there was there an instance in either the lack of luck category or otherwise, that prompted your interest in trauma informed care?
Erin Gilmer:So trauma informed care, was not a term I was familiar with until 2017, actually, so about three years ago, I went in for a procedure and had to be under general anesthesia and I woke up with just very severe emergence, delirium, and it was, it was really bad. So I came out of that, not kind of knowing what to do, but also knowing that a week after, exactly one week later, I was going to need a surgery. So I needed to quickly figure out exactly what I was going to do. So I didn't have this experience again, and I was talking to another patient, a friend of mine, Lisa Bernstein and, she had mentioned this term trauma informed care, and how she talked about it in terms of giving patients kind of more choices and thinking through what their care might be. I thought, oh my gosh, this is really interesting. So I immediately went online and started just googling the term trauma informed care, to look it up to try to see what it meant. Were there best practices out there? What could I learn that I could implement? So that I could protect myself for the next surgery?
Victor Montori:And so you've just now triggered all sorts of people who say, Oh, my God, she went to Google?
Erin Gilmer:Oh my gosh.
Victor Montori:That is the, that is the worst place to go. And then you get all sorts of bad ideas. But was it productive for you?
Erin Gilmer:Yes. So um, I know that the common conception is that a patient is going to Google something, and we're going to go to WebMD, and we're going to get, find out we have cancer and that's kind of the trope. But the reality is a lot of patients are very adept at using Google to find resources these days. You know, some are better than others. Luckily, when I was googling, you know, I use Google Scholar, which is a lot like PubMed, a resource that not everybody knows about, but is a great tool if you want to find research papers. And I also just looked up, you know, institutions or researchers who were credible, and came across work from, there's a woman, Carole Warshaw, who has actually been doing this work for decades in Chicago, and works for a national nonprofit, on domestic violence and mental health. And she had some great presentations on trauma informed care. So I just went ahead and found and emailed her. I found her under email and then I said, listen, I'm a patient, I came across your work, this is all really interesting to me, can you tell me more, and she ended up sending me a bunch of articles that I was able to kind of read through and present that information back to my own doctors, and nurses and anesthesiologist. And that surgery actually ended up being one of the easiest surgeries I've ever been through. So...
Victor Montori:So it was the pursuit of that, the lead by your peer patient...
Erin Gilmer:Right...
Victor Montori:Searching, not regular Google, but Google Scholar...
Erin Gilmer:Both, actually both. So I start, usually when I'm looking up something new with regular Google, so I can kind of see trauma informed care is that kind of what we, you know, being an attorney, we call it a term of art, something that has a specific meaning. And so does it have a specific meaning and a specific knowledge base? And then if it does, I can take it to Google Scholar and look for the actual research articles themselves.
Victor Montori:Yeah, and I was just at a meeting where a person that is, that works for Google, and in the health side of Google was telling, said it casually, so I don't know the reference and to what extent it is, it is true, but that when people do a search related to a health term in Google, the third click is usually more likely to be to a patient forum. So I like to...
Erin Gilmer:Interesting...
Victor Montori:Yeah, I like to see that in a little bit more detail, but, but it does, so then the notion that peer patients are one of these...
Erin Gilmer:Yes
Victor Montori:...Routes towards understanding and practical wisdom, it seems that it is becoming a little bit more common knowledge and common behavior.
Erin Gilmer:Yes, it is. You know, a lot of doctors aren't super thrilled about patients giving patients advice, because we haven't been to medical school. And I understand that but a lot of us have kind of been through a, you know, Cliff's notes version of medical school because of all of the interactions and the things that we've learned along the way. We often like to share with other people so that they can use it and grow it. There are some amazing blogs out there great people on Twitter. I know, I'm not on Facebook, but I know there's some very resourceful Facebook groups with patients just coming together and sharing knowledge. And that really, you know, will tie into some things we talk about on trauma informed care, which is changing the power structure so that it's more equal, so that we're kind of all in this together on this on the same level.
Victor Montori:Patients and clinicians as partners.
Erin Gilmer:Exactly. Yeah.
Victor Montori:The Mayo Clinic has a Connect network, kind of a protected network, the Facebook type, for prospective and past patients of Mayo that also hosts conversations like, like that, you know, between patients and with some degree of moderation, because I think some patients are also quite afraid of getting into those environments, and either being given misleading advice, although these communities tend to self correct. But also, you know, who knows what kind of scammers and other folks are lurking. Turns out the same thing for clinicians. You know, we tend to believe that we're protected by our training, but...
Erin Gilmer:Not always
Victor Montori:Not always. That's for sure. The, the other thing that is remarkable this story about how you got into trauma informed care is the fact that you, you know, called on an academic cold to, to get to get resources, information, and you got a response. And yeah, it's kind of interesting for us, because we, you know, I have the opportunity to mentor people. And I often recommend that people, you know, contact the authors of key papers or, or tools, and and the bet is will they respond? And I always bet for, in favor of a response and sounds like that you had had.
Erin Gilmer:Yeah, I think I learned to do this over the
Victor Montori:Yeah, but but I am a big endorser of what you years and reading papers, look for the lead author or principal investigator, usually, they'll have some contact information on the paper. And I actually started doing it because as a patient, a lot of these articles are behind paywalls. And so if I wanted to read something, I don't have the funds to be able to purchase each one. Um, but I want to be able to understand the information to help me or help other people. And so I learned to reach out in those first few times, it was like, I don't know if they'll ever get back to me. But they did, I actually still have a website up, called the research loop with this very idea in mind of having patients be able to contact researchers, because I think there is a unique way for patients and researchers to engage and learn from each other, you know. And that was even shown, you know, going forward when I talk to this specific researcher about trauma informed care, and she sent me all these articles, I put together things for my doctors. I also said it back to the, thi researcher, Dr. Warshaw and I said, What do you think? Do you think this is going to help anybody? And her response was, yes, actually, in fact, can I use this to teach now my people on how to help their patients engage and so there's just this armth, in collaboration with esearchers that can happen to eally improve care. nfortunately, I don't see it eing utilized enough just ecause I don't think people now they can. just described, which is the notion of generosity. So the researcher sent you material, begetting generosity, you took the material found it helpful, added value, sent back and now that, that begets additional generosity, where your material now gets to support the training of other folks that may be in a position to offer trauma informed care in a better way. So if there's a circle of giving, that is enacted. On that note, have you identified a primary value that's been motivating your, your work as an advocate?
Erin Gilmer:Yeah. You know, I come to everything through the lens of health as a human right. I came to that in law school, I did not actually, like law school, I went to law school and part to keep my health insurance, which is kind of a sad joke, um, and was lucky enough to get to study human rights, came across health as a human right and said, yes, this is exactly what care should be about is, you know, these fundamental principles that we should all have, and make the world better. And I think of health as a human right, kind of as broadly encompassing all sorts of areas, including, you know, housing, access to food, transportation, you know, all of the issues, actually, that we're seeing right now, is very serious issues during COVID, that people maybe didn't see as related before. And part of viewing something through human rights lens, I think, is coming to it with compassion, because you are viewing everybody as deserving of care and kindness, and, you know, a good life. And so compassion is also kind of that principle value I want to imbue in all my work and, and what I try to advocate for.
Victor Montori:Health as a human right is, it's it's a heavy concept in a number of ways, but one of which is that it puts upon the state, the government, the requirement of advancing and protecting that human right for every citizen. That, you know, that's something that is a commitment that, for instance, in the United States appears to be non-existent.
Erin Gilmer:Right, it's becoming more of a rallying cry for some, but it is polarizing for others. And I would say, because it's a human right, and we think about human rights in terms of like, who enforces them, who is going to make sure everybody has access to care. We forget that human rights are also kind of enforced individually, you and I also have the responsibility to ensure health as a human right to our fellow citizens, you know, I have the responsibility of making sure there's equity in health care just as much as the government has a responsibility and, you know, that all again, comes from compassion, do I have compassion for the people around me? What they've experienced what they've been through? Whether they have resources or not, you know, how can I make sure that everybody is cared for?
Victor Montori:There is a, there is this notion that I have begun to understand or at least explore that that puts care in the middle of an understanding of how we are relating to each other how we're relating to the world. And it speaks of these caring interactions between individuals, which would be when you care for and about someone, you know, you are advancing their, their capability, their possibility for human flourishing, but it also extends to, you know, caring communities, where you look at issues of housing, for instance, and you know, access to resources, transportation, you know, clean water, clean air. And then you move to to caring societies in which we, for instance, take care of the planet and make it a sustainable place.
Erin Gilmer:Right. Yeah.
Victor Montori:So, when you, if we land this at the level of healthcare, then one can see how trauma informed care appears there as a, as an area of interest as an area of advocacy. I often ask in this, in this series, you know, what's been your favorite collaboration and I wonder if this is a place where we can begin to see how, how that plays out?
Erin Gilmer:It's a good question. You used the term partners in care before I like to use the word colleagues in care. Just because I think it's great when we can respect each other, coming to the table with all sorts of unique, both lived experiences and kind of learned professional experiences, and realize how much we can gain from one another. I think I've been fortunate to have some times when I've had really good care. I talk about it as the doctor who "got it", which is kind of this ineffable thing, of seeing somebody and understanding them, and wanting to get to know them wanting to engage with them. on a deeper level, I know you've talked about it in your book, and I've talked about it with some of my friends about infusing care, healthcare with love, which is kind of a radical idea, and kind of what trauma informed care is all about. Because it's about having, again, that compassion and humility to want to care deeply about somebody and I have had those experiences which have deeply healed some of my past trauma from a very, from various sources. And, and when it's gone wrong, it's created trauma. You know, I think that something that healthcare doesn't recognize is that healthcare is endemically traumatizing. Even sometimes what we think of as good care, you know, a good surgery is still traumatizing, you're going through a lot, you may have a good doctor and a good anesthesiologist and a good team, but you come out of it, um, you know, having been vulnerable, having to, you know, give up a lot of your dignity and autonomy to somebody else. And often, even the good doctors who are trying hard and don't think they're doing everything wrong, and they're following the book, are still creating trauma, because that's just how care is kind of provided. And so I think it's important to understand that infusing your care with love, helps protect against some of just care, you know, as it's normally given, and it does even more to heal care that is poorly given.
Victor Montori:So let's unpack that a little bit more. The, first, I'm interested in, in your definition of what kind of love are we talking about? Because I, yeah, there was just a course at Dartmouth College on, it is a graduate course, where they use the Why We Revolt book as the basis for the discussion and the students were asked which of the chapters caught your attention and they did a word cloud and the word cloud, the biggest one was love. And then we got, you know, the question, you know, one of the questions was skeptical. You talk about love, but you really don't need love to care for patients. What's your take on that?
Erin Gilmer:Well, um technically, you do not need love to provide care your, you can provide care dispassionately. Um, but as I just said, you know, that is going to leave somebody with some kind of medical trauma. Usually, not always, you know, I go to the pharmacist and I get my flu shot and that's not particularly traumatizing and they're not in a particularly, you know, giving me love when they're doing that. Um, that's something, that's how healthcare is but you know, when I go to the doctor's office, and something hurts or something is wrong, you know, I have had very dispassionate doctors and then I leave crying, and it's like, well, they gave me care. So technically I'm okay, but I feel, you know, emotionally spent and drained and still left unheard. So I think if you want to provide good care, that love does need to be part of it. And you know, I was going to read back your own words like, when care is wrapped in love, however crying happens, the patients and I know that these loving relationships help to recover from a setback, to regain perspective or hope. And to reframe a goal with compassion and self forgiveness, we know that love heals. And I think, actually, when I read your book, that's one of the first places I reached out to you about was how much that hit me because I hadn't had loving relationships in care all the time. And that takes a toll, especially with somebody with disabilities, especially, you know, chronically ill patients who are in and out of the doctor's office all the time, you're dealing with pain and vulnerability. And the only way to get at that is love and compassion, to keep wanting to, you know, move forward with treatment, when everything seems too much, you know, it's that love that really moves it forward. And I think people sometimes push back because, again, there are boundaries, this isn't, you know, this is still a professional relationship. But I don't think it has to be as sterile as maybe medicine, sometimes teaches.
Victor Montori:So the, the, that suggests, so my perspective, and thank you for reading, reading the book about this, but my perspective comes from taking care of patients with chronic conditions. And so one thing that is fertile ground for that loving interaction between patients and clinicians, is continuity is, is that we get to meet several times and over time and sometimes through difficult times, sometimes through easier times, and the relationship develops in which we get to appreciate and know each other. But a lot of the trauma, as you pointed out, occurs through these more casual interactions were with a specialist perhaps, or somebody who's about to do a procedure, in which there's really little opportunity for a relationship, a meaningful one, at least, to fully immerse before somebody is ready to invade you physically.
Erin Gilmer:Right. And that's one of the things that trauma informed care does focus on, kind of in two aspects, I'll come back to kind of the universal precautions aspect. But, um, you know, trauma informed care, asks that every provider recognize from the beginning that there is this power differential, where the patient is vulnerable, and does not have all the control in the situation so that when the patient does show up, the provider is already keyed into understanding that there could be a vulnerability here, and it's their responsibility to create, you know, a warm, comfortable, secure, safe environment. And then that, again, goes back to universal precautions, which is basically I'm going to implement something universally, because I don't know who's going to walk in my door that has trauma. And it could be one person, or it could be 50 people that come in, that person could tell me they have trauma, or maybe somebody comes in and they aren't going to say anything and it's the fact that I have all of these things already set up to provide trauma informed care that is going to help them be able to trust me, even develop a little bit of a relationship, even if it's a short term relationship. So, you know, one of the things in that first example, when I came to trauma informed care was talking to anesthesiologists. I actually, for all of my time in healthcare, and however many surgeries I'd had up until then, I never actually knew I could talk to my anesthesiologist the night before, like, I always got that 15 minutes before the surgery, and not the night before, um, where I could have a little bit longer conversation with them about what my needs were, you know, what was maybe something I was scared about. So I think another aspect you're talking about here is that patients don't have great ways to communicate with providers before or during that care relationship to really help them see the patient as a whole person. You know, and how do we open that up to foster kind of a better care environment?
Victor Montori:Do you see this going beyond I mean, we're getting questions now from our audience now, and one of the questions is struggling with with this definition, or this description of love, and wonders if, if you're not simply speaking of just general kindness, how do you distinguish that?
Erin Gilmer:Um, you know, that's interesting, it's making me think for a second. So there is a couple of things with kindness is, you know, hopefully something we can all practice every day, it's part of compassion, it's part of understanding somebody else's experience, even when maybe they aren't being kind to you. I think the difference with love, and in trauma informed care is that it forms an actual relationship. So there's a back and forth, and there's a want to be in this relationship. So a desire to want to work together. One of the hard things for patients with trauma, or, you know, patients who have had bad experiences in healthcare, is, it is far too easy for those relationships to break. So, a patient comes in and, you know, speaks up and says, you know, I didn't like that, maybe you did this and the doctor says, you're a difficult patient, goodbye, you know, and that doctor can say it kindly. They can say, you know, I've appreciated having the time to be your, doctor, but I don't think this is working. I wish you all the best, but that's not loving. And that's not trauma informed, because what they should be doing is saying, okay, maybe this patient didn't like what I did. Let's not take that as an attack on me directly. Let's process, you know, maybe something I did could have been better. Maybe something the patient has been through has made my action, you know, more substantial to her, kind of had some, like gentle curiosity there about how could I invest back into this relationship because I want to care about this relationship.
Victor Montori:There is curiosity, why this is happening? You use the word gentle curiosity. Why did you feel the need to add that adjective?
Erin Gilmer:I say gentle, because I think sometimes people feel, especially in an age of social media where a lot is shared they feel like they need the whole story. So they need, you know, a doctor could ask back well, why, why didn't you like that? Why is that so bad? You know what's wrong with you? And that puts somebody on the defense, do they have to open up and share their entire trauma history with you to help you understand? So be gentle in trying to kind of understand without, you know, breaking everything open, every patient is going to be different in what they want to talk about what they're comfortable, you know, opening up about and so, the gentleness is just a reminder that, you know, sometimes we are very curious, but that story is not ready to be told. You know.
Victor Montori:You also, that also, that notion of, oh, you're not attacking me, I just took a misstep. Let's understand it a little bit. That also requires a substantial degree of humility.
Erin Gilmer:Yes. And that is, I think, besides compassion, the fundamental part of trauma informed care is asking for humility. It's asking for, you know, doctors have kind of this authoritative power. And traditionally, it's been kind of a patriarchal power. And so to take that power away and say, okay, the patient may be saying something I don't want to hear. But maybe something that the patient is saying is something I need to hear. And that does take a lot of humility, to step back, and also be vulnerable. And that's, again, part of love, is both parties are showing and being kind of vulnerable, so that they can work together.
Victor Montori:And when, when you speak about trauma informed care, the, and when the emphasis is on, on, for instance, attitudes, you know, coming to the relationship with humility, with gentle curiosity, genuinely interested in the relationship, this attitudinal list that we're building here in conversation would suggest that it is a formal approach, that it is a, a something that I can put up, you know, I can, I can, I can put up as a theater, as a play in my interaction with, with people. Is there a content component to that, to that theater? Is there, is there, is there substance to, or is it simply just, if I come with those attitudes, what will come out on the other end naturally will be, will be care that will be appropriate for folks who have experienced or are at risk of experiencing trauma.
Erin Gilmer:I think, if I understand your question correctly, it's a little bit of both. So, you know, you can kind of put it on as a mask, I guess, you know, just like putting on your white coat, you know, you're going to put on your trauma informed care coat. And, you know, that, in itself is going to help shape the relationship. But there are very practical things that can be done, you know, one of a couple of my posts on this gives some very detailed things, everything from creating, you know, a calm waiting room, with, you know, patient forms that are very, kind of understanding of different cultures or, you know, of the LGBTQ community, you know, that are considering all different sorts of experiences going in. Everything from that those waiting room experiences to being in the exam room, and letting the patient know, it's okay, if you want to have somebody here with you. You know, when I do a procedure, everything from listening to your heart and lungs, doing the what they call, you know, ask before acting, so, you know, can I listen to your heart and lungs? And you know, that seems that's the basic thing you might do in an appointment. And, you know, you would think, of course, the patient's here of course, they'll let me do that. But there might be a patient who says, no, no, I'm not ready to be touched today. So, there are some kind of real examples of things that can be put in place, as well as the overarching you know, attitude, which I think, you know, you have to have that attitude just to start with, that you want to come at this from a place of compassion and understanding.
Victor Montori:It is not too difficult to see how, how once you do that, you not only do you develop love as an outcome of the relationship, but you, you create an environment for for love to develop, you know, and so, so it's, one of our investigators is asking about a project that we're doing in the unit that is focused on patients who, we, the project is called the "under-cared" project, it is patients who come for care, but they have a condition that, that for which there is no good mechanistic understanding, sometimes they're called unexplained medical syndromes.
Erin Gilmer:Yeah.
Victor Montori:And some people, it's a lottery right. Some people come to care for that and, and they get traumatized by the response, they get dismissed. They don't get, they don't get heard. And you mentioned is that feeling, feeling left, you know, feeling unheard is one of the ways in which health care even what appears to be fairly competent technical healthcare could be cruel in my language, traumatizing in the language that we're developing here. I wonder, the question is, was about our, you know, what are examples where, where you felt heard, and, and feeling heard made a big difference in the way things went?
Erin Gilmer:Yeah, so an example of where I felt, heard...Gosh...I'm just trying to think how to make it short, because it involved a lot of people who really wanted to help. And it, you know, it took something that we don't always have in healthcare, which is time. And we don't have time, because there are money issues and because there are a lot of patients to see. And, you know, when somebody invests that time it is really unique, because you get the time to, a term I've talked about in the past called hold space. And holding space is especially important for those times where there's not necessarily an answer, where what your role is, is to listen, and validate and and recognize what the other person is saying and going through, and kind of not just, you know, they've come into the clinic, I'm seeing them in this five to 15 minutes I might have right now. But trying to see beyond that space. So you know, your patient has a family, or has pets, or has hobbies and interests. They've got good things in their lives, they've had bad things in their lives. And can you find a way to hold space for all of that, which is a lot, in the small timeframe that you have and what ways can you make time, you know, that's another thing that really shows up in trauma informed care is, you can tell somebody is compassionate, and wants to understand you when they want to make that time for you. And patients, you know, are understanding, we know that there are a lot of other people that you have to see, you're restricted in your time. But what we need is, you know, again, to feel that validation in being heard, and sometimes you know, your clinic, you're saying a lot of people may not have some exact diagnosis, and it's something that you're investigating and maybe doesn't have an answer. I think a lot of COVID patients with the, you know, kind of had long COVID have this sense of not knowing what's next, or what their body's going through, to be honest, and say, you know, I don't have an answer, which is something doctors don't like to say, um, is a valid answer, but it, not just to stop there. Again, to say, I don't have an answer, but I am here to listen and help. And I will try to find an answer if we are invested in this together.
Victor Montori:So the one of the things, one of the themes of this, of this KERcast, is this idea of care that fits and and what, what we normally speak of is care that makes intellectual, practical, and emotional sense. And it doesn't say fixes that make intellectual, practical sense it says care. Right. And, and so I think that concept is opening up to include people that we cannot fix, but whose health situation we can advance with, by listening and being humble and and joining them in their, in their, in their, in their struggle.
Erin Gilmer:Right. Yeah, I think that's the key is it's also, you know, kind of a process, it's not something that, you know, when you think of fixing something, or having a cure for something, you know, that gives an end to the relationship. But most health care instances, there's not really a fix or cure necessarily, it's something you're going to carry with you, the rest of your life, like even, you know, I had hip surgery a year and a half ago, you know, my hip's great. But I'm still going to have that experience of the pain that came before the surgery, all of that I'm going to carry with me and have as part of my health history for the rest of my life. So it's a process, you know, technically, it's fixed. But as a person, it is still part of me.
Victor Montori:You've, you've been through a lot of healthcare from what you've indicated during, just during this conversation. And as a result, you must have filled thousands of patient satisfaction surveys. Do any of them, do any of them ask the right question, or what is your favorite question that they ask and have you ever seen anybody act on any of them?
Erin Gilmer:This is actually a great question, because the state Medicaid program here just asked me a very similar question, of they have their patients surveys, and they said, we're not sure how to get doctors to act on these surveys and what to do with these surveys, and I had to do the very unfortunate thing, which I'm going to do now of saying doctors don't want feedback. That's how it not only feels but often plays out. Health care is kind of cruel and unfortunately, when you bring up feedback, often what comes is defensiveness. That's part of the I think, American system. I don't know if it's everywhere. And it's very legalistic, based, you know, I've been in hospitals were all I wanted to do was share with them my experience, and I got a letter back from a lawyer. And I was like, no, I just wanted to make care better. And now we've made this, you know, they weren't going to sue me, but their response was, we you know, we followed our guidelines, we did XYZ. So it comes back again, to what I was saying earlier, with trauma informed care, having the humility to take feedback, and not become defensive and not see it as an attack, and wonder where it came from, and what can I do to change and be better because patients generally aren't filling out these forms thinking that you know, everything is going to be rosy, all of the sudden, you hear my feedback, and you're going to change everything and now care will be better for all I think most of us have started to realize we fill these out and sometimes they go nowhere, and nobody's listening and nobody really wants to change, and that's heartbreaking. It creates a sense of, you know, another term called betrayal trauma, or institutional betrayal trauma, which is a kind of a break in trust. Not only have you now not heard me, but you're either not acting, or you're reacting in a very defensive way. And that hurts. Because I'm already vulnerable and I've already been through something that maybe wasn't great. I will say do also try to provide good feedback, like when something is good. I think that's really important to acknowledge doctors and give them their gold stars when they do listen.
Victor Montori:I, you know, Erin I think that I'm going to project that my colleagues and I we have extremely frail egos, and we've gotten far by by aceing the test and all of a sudden we get a failure from the, from a patient, oh, my goodness it is the end of the world right. And so we fall apart, but also institutions, I think, have not bought into this idea of seeing patients as colleagues and, or let alone they're not capable. Institutions can't care, institutions can't love, right? And so they're not, they're not capable of responding with love. So they, they respond with the with the legalese. And you know, what one, but but I think this, this, this, the idea that patient satisfaction surveys could be an expression of curiosity, but instead become a pro forma way of actually responding to a system them rather than listening to a patient. I think it's another another opportunity to introduce cruelty and trauma is what you're saying, which I'm sure people that are committed to patient experience improvement will be, you know, quite dismayed by. One of the questions we're getting is that it's about training, to what extent, you talked about universal precautions that anyone coming in for care is in a position of vulnerability and caring, I mean, the definition I like to use for caring is is the ability to approach the person with the intention to advance their situation, noticing that they, they are in need of care, and then responding with compassion and competence, oftentimes, co-creating that response, right, that's how I think of care. You're saying that, in a context of trauma informed care that we need to have a universal precaution assume the person in front of us either has experienced trauma or is at high risk of experiencing trauma now, and there's some universal precautions that we can, we can use to prevent that outcome of re-traumatizing...
Erin Gilmer:...Added as a competency in medical education, I think they've taken some baby steps in medical education to talk about empathy, trying to see things from the patient's perspective. But there are some kind of problems with empathy. The first being as a doctor, you are, by definition, in that situation, not the patient, so you can't fully understand their situation. So you know, one thing in education that can help and in training that can help is what you're doing now, which is inviting a patient to talk to come give insight into their experiences. And that's even more important for other marginalized communities, you know, people of color, people in the LGBTQIA+ community, and really listen so that you can get that perspective. If it's not in training, then it's something that I think medical education kind of does the opposite of and says, don't become too attached. Keep your relationships professional and sterile and have very secure boundaries and you know, don't let anybody in and it kind of becomes very isolating and cold and it's much harder to learn those competencies later on. But it is also kind of a journey, something that is changing all the time as we listen to different populations of patients, different experiences in different settings. There are a lot of great research articles out there that talk about trauma informed care and how to implement it, a lot of great presentations. Meg Gerber has a wonderful book on trauma informed care in primary health care. She is a great advocate, who I would recommend, I, my one concern with all of this is that a lot of times the articles and the things that are teaching doctors are also made by doctors. So again, back to that first point of invite patients in to teach and to keep helping you learn because you never know what materials or resources they might have to offer and, and build upon.
Victor Montori:Yeah, the, when we think about care that fits, we talked about and you know, developing an understanding with the patient of their biology and their biography and it sounds like an example of that biographical context is their experience or vulnerability to trauma. And you've you've educated us about this importance of gentle curiosity to seek to understand, without necessarily, you know, going beyond what is necessary to act, respecting that people may need, may end up reliving their trauma by by having to elicit it in detail, in the detail that you're being, you're inquiring, do I get that right?
Erin Gilmer:Yeah, yeah, I think, again, there's a way to go about, you know, asking people about traumas, and some of the research says, to make it kind of a universal ask, just like we now ask about alcohol or drug use on an intake form, and kind of normalize it and say, have you experienced trauma in the past? And that doesn't mean that you have to ask, okay, and tell me now all about every traumatic experience, some patients may not even recognize that what they've been through is something called trauma.
Victor Montori:Yeah.
Erin Gilmer:And so, again, it's both kind of normalizing the conversation, and also giving the opportunity for somebody to speak, but also just be cared about, in general,
Victor Montori:How many opportunities isn't it, because as we accelerate health care, there is, you know, there is less time for us to hold space, to listen, to have curiosity, the clinicians that are showing up to care 40% have symptoms of burnout. So compassion is going to be in short supply. And we have done a great job at lowering expectations, that you will encounter a caring, kind, curious, and humble clinician when you seek care. Should we have hope?
Erin Gilmer:You know, that's hard for me, honestly, I'm going to be quite frank, that some days, I, I don't have as much hope. And, and, you know, I've been writing about trauma informed care for a couple of years now, and reading the research and talking with doctors and with patients, and some days, you know, you see a patient who finally comes across this and is able to process their own trauma, and find ways to advocate for themselves. And it is inspiring, because you think, gosh, you know, that's, you know, seeing somebody heal like that and move forward, is, you know, why doctors do what they do. Because that light is just something incalculable, it's wonderful, but then there are other days, and I think we're going to have a lot of them to come because of COVID, because of how many patients are now in our system, because of how overwhelmed nurses and doctors have been, where you know, that light is going to be dimmed if not go out sometimes. And that's really hard to think about and to keep wanting to go through, but I think it's in having these discussions like you and I are having that kind of rekindle that hope, okay, maybe it's been lost. But maybe we can find it again, and find it in new ways. You know, because again, it's ever evolving, and patients are ever evolving. And the resources we have, whether it's the ability to simply email my doctor now is something back in the day, I didn't have, you know, now I have a way to connect on a different level, I can send you a picture of my cat, and we can connect that way. Versus, you know, in the old day, just wait by the phone for a call of my, you know, blood work. And so I want to hope that there's hope, but I do think we have to be realistic that because of the many different ways that healthcare has been set up in America and because of the many challenges we're facing now that it's going to take time and a lot of energy, people wanting to invest in this.
Victor Montori:Erin, your, your energy and your generosity and your clarity and your advocacy is, is the source of my hope. So I really appreciate you joining us today. I want to ask you the last question, what's, what's next for Erin Gilmer?
Erin Gilmer:Um, I don't know, I honestly don't know, um, you know, being disabled, being a patient, one of again, one of the real frank conversations to have is levels of engagement. And there are, you know, months at a time where getting out of bed might be hard. And that is what I do that day. And that has to be my accomplishment. We live in a society that values work, work, work, work, work. And so there's a lot of shame and difficulty in coming to that realization that, you know, I'm not productive every single moment of every single day. And I think a lot of patients, chronically ill people feel that. I think a lot of people during the pandemic are feeling this as well. What does it mean to be productive? What does tomorrow bring? We don't know. And it's, and I think we need to come to a place of, again, holding space for each other in those moments. So, you know, what's next for me is the hope that there are days where I can write more and share more information. And there are days where I hope that people are able to hold space for me, or I'm able to hold space for them and what they're going through. And in that way, I also get to practice trauma informed care for the people around me, right, you know, it's coming back to that part of our earlier discussion on human rights and offering kindness and care to, to one another. And we can do that, you know, at the big grand levels of, you know, instituting trauma informed care as the way to practice. And we can do that at the small micro levels of just saying, how are you today? You know, I'm here to listen, you know, I'm glad you're here. So...
Victor Montori:It's a, it's been the KERcast from the Knowledge and Evaluation Research unit. Thank you for joining us. I hope to see you next time and take care and Erin, thank you so much.
Erin Gilmer:Thank you.