21 I Latine/Caring for Undocumented Latinx Patients Through Illness Narratives (Dr. Odette Zero)

• Timespan: 51minutes & 38 seconds
• Transcription Type: Cleaned Verbatim
• Speakers: ( Dr. Odette Zero & Raj Sundar)

00:00

Dr Raj Sundar: Okay, let's talk about the core tent of healthcare. What do we typically do?

00:05

Dr. Odette Zero: Someone tells you a problem and you instantly want to fix it. That doesn't work, because you barely understand the context. You barely understand the person. You don't understand the problem, you're just coming in very top-down and trying to reinforce your worldview, your perspective, your understanding of their disease, not understanding their understanding of their own illness. So for me what I learned is that illness narratives, why, and how powerful it can be to create space for someone to just listen to their story. And that's it, not to comment, not to clarify, not to try to problem solve.

00:42

Dr. Raj Sundar: Hi, I'm Dr. Raj, Sundar, a family physician, and a community organizer. You're listening to Healthcare for Humans, the show dedicated to educating you on how to care for culturally diverse communities, so you can be a better healer. This is about everything that you wish you knew, to really care for the person in front of you, not just a body system. Let's learn together. Welcome back to Healthcare for humans. Joining us today is Odette, a family medicine physician with a deep understanding of caring for the Latine community, particularly those who are undocumented. This is part of our Latinx series and our two-part segment on caring for people who are undocumented. Our conversation today centers around the concept of illness narratives. This concept was first introduced by sociologist, Arthur Frank in his book, "The wounded storyteller, body illness and ethics". If I have to give a one-sentence definition of illness narratives, it will be this "illness narratives or personal stories individual share about their experiences with illness or health challenges". Now, when you hear that you might be thinking, that sounds basic, and don't we already do that in healthcare? We do, kind of, and sometimes, but mostly, we lean towards our current medical paradigm, focusing on objective symptoms and test for good clinical outcomes. Don't get me wrong, this is often important, necessary, and effective. I'm not arguing that, but it's often insufficient. Let's talk about two reasons. One, it doesn't always address the bigger picture, and root cause of diseases. And two, it diminishes how we, humans experience disease, and process suffering. For example, let's consider situations where the root causes extend well beyond clinical care, such as the impact of climate change on asthma, or the mental health effects of immigration and documentation status, which we'll be talking about today. In these instances, illness narratives are merely listening to people's stories become indispensable, and sometimes the only thing you can't do. They allow us to hear the person we're caring for, and stand by them as we advocate for structural changes. The second reason is our current medical paradigm tends to diminish people's experience of suffering when they have an illness. We are humans. And when we suffer, we try to process it, make sense of it, and find a way to move forward. It's much more than just about clinical outcomes. It's about sense-making. Illness narratives allow people to do just that. It allows us to create meaning, and a space for connection, solace, validation, and empathy. I'm excited for today's episode with Odette. The focus is on folks who are undocumented, but we will explore the challenges faced by undocumented individuals through the lens of illness narratives. And then we'll examine how Susto is attributed to illnesses and unravel the complexities of talking about intimate partner violence with patients who are undocumented. Odette, who has a lot of experience in this field, will generously share her insights and offer strategies for providing culturally responsive care in these situations. Here's Odette. Hi, Odette. Welcome to the show.

4:28

Dr. Odette Zero: Thank you for having me.

4:29

Raj Sundar: Yeah. Thanks for joining me. I'm excited to have you on today. We're gonna be talking about caring for undocumented persons today. Before we get started, tell me about yourself.

4:40

Dr. Odette Zero: Sure. So, my new identity is I am a couple of months of being a family medicine intern. I moved here from Rhode Island and then from there in Vienna, so I've been jumping around all over the country, but one of the recurrent narratives of my journey has been my mother's from Guatemala. lot and growing up there throughout my childhood and spending long periods of time during my life gave me a passion to work with the Latine community, wherever I am, and just be a source of support to that community. And I'm really honored to share with a medical physician. And part of that journey to be analyzed and physician was because I wanted to be able to treat everyone of all ages legal statuses, and colors. And I felt like that was the perfect place of medicine for me.

5:30

Dr. Raj Sundar: Yeah, cool. That's awesome. I want to first start with your history with illness narrative. You've done a lot of work around that, I think in Guatemala, and in Chicago, and with indigenous Peruvians. Tell me what illness narratives mean to you? And why has so much of your life been doing illness narratives? Why has it felt important?

5:52

Dr. Odette Zero: Definitely, I think that I grew up listening to illness narratives from a very young age. That is how my mother, my grandmother, and my family talked about illness and how it makes meaning in our lives and trying to make sense of illness. So coming from a culture that is just so much about storytelling as a way of transmitting information, culture, and history, I always felt like stories were the most powerful vehicle for change, and also to better understand someone and also to understand yourself. So I felt like wherever I was in the world, I ended up kind of playing the role of the listener and feeling like creating space for someone to tell their story, and make meaning of their story and their illness was the powerful tool of healing. And I think that's the approach that I tried to bring to medicine, realizing that a lot harder as a doctor, when there are so many competing responsibilities. I came at it from an anthropological background, where all you need to do is just sit and create space for active listening and hearing someone's story and helping them make meaning out of it. And I think that what's really important is, when working with patients trying to understand the disease, like for type two diabetes, like we know exactly the mechanism of how it damages the body, we know how the pharmaceutics we know the medications that we need to prescribe those patients that help them get back to health. But I think that what we miss sometimes is the illness aspect of the disease and illness meaning the illness experience of that patient, what is the meaning diabetes has to them? How has it changed their lives? How do they understand the process in which that they thought diabetes, and how to change their lives and allies have changed how they see our future. And I don't think we have those conversations and not. And there's another at the logical term called illness scripts. And it's the ways in which people really understand their illness. And when I was doing research in Guatemala, and I came home, and it was more rural community that never experienced chronic ailments, and diabetes was the first chronic illness that community had. And I'm sure there were chronic illnesses, but there was never something that was in the consciousness of people that there can be an illness or disease that you could never be cured of. And a lot of the people that I talk to understand to diabetes to be caused by susto. Susto is this big event, and it could be that you were walking down the street and someone scared you and that's also store, it could be the death of someone important to you. These susto's are believed to cause diabetes. And that's a common illness script or illness narrative of patients and it's something that understanding where patients are coming from and helps us understand further how we can help them manage their illness experience better manage their disease better. Another understanding was that once the doctor or healthcare provider says, "Okay, I think we can just start insulin', that can be seen as a death sentence that is seen as Okay. Everyone who's on insulin dies. So when I'm on insulin, that means that it must be really bad. That means that this is really serious. And again, like with everything, anthropology, falls into this problem of generalization. So you talk to 15 people in a small community in this one context, and then you try to make better relations, realizing that inherently has danger to it as well. And the other aspect of anthropology that made me stay away from it was the fact that I felt that it was great to interview people create a space where they're able to share their experiences. Try and build Healing Within that active listening process and that illness narrative, but then at the end of the day, you write the paper And then where does it go? And what does it change? And that was what led me to medicine thinking that I could play a more active role in listening to these narratives, and then helping that guy and my management and my patient care.

10:15

Raj Sundar: We need people like you. How has it been incorporating what you know, in anthropology to clinical medicine? because I think healthcare often doesn't make sense, or doesn't make space for illness narratives, and patients' experiences of illness. I think it's worth clarifying here, because I know a little bit of anthropology, in that there a specific definition of illness versus disease, maybe we first clarify that. And then I'm curious to hear your journey on attempting to bring in this knowledge of anthropology that you hold and what we call sometimes patient-centeredness. In healthcare, we have separate terminology. And what that has looked like for you?

10:54

Dr. Odette Zero: Personally, how I understand that illness is the patient experience of disease. Disease is what's happening inside the body outside of the patient's experience. And I think that dichotomy is where we don't listen to patients, and we don't hear what they're telling us. And we keep prescribing and pushing up plan that does not feel right to them. I think that's where that disconnect happens, where you're thinking, you're on the same page with the patient poverty by nutrition, exercise, and insulin, and then questioning why you're talking about the same things every single visit. I guess that's what I've been realizing is that in the 15 minutes of 30 minutes visit, there's so much of agenda setting. Certain tasks that you need to do as a physician. And then realizing there is really no space for understanding the illness of the patient, the individual patient-centered experience of what it means to have a certain disease, whether it's acute or chronic. So I'm still figuring it out in terms of how to best incorporate my anthropological illness narrative background into medicine. I hope that when I'm crafting my intern practice, maybe creating time for certain patients, who I think would really benefit just to have a follow-up visit where all we do is listen.  I have no immunizations to give. And I thought no questionnaires to offer. And no medications. But literally, all that we're planning to do is just I want to hear your experience. I want to hear your story. And the space is yours. I want to better understand you so I can help better take care of you.

12:38

Raj Sundar: I like that. I love what you're trying to do. My follow-up question to that as people struggle with this conflict of clinician's understanding of disease and the patient's understanding of illness. You brought up a good example of diabetes, as from our understanding is a disease caused by insulin resistance for the patient, it could be caused by so many things, including susto. When that occurs, I think it's easy for people to dismiss the patient's understanding of the illness and try to impose our understanding, because we're right, they're wrong. Is there a different approach to that without losing the patient's dignity, because there's power in our dynamic, and now we're imposing this view of the world on them, and telling them they're wrong? Like, they're not intelligent enough to know the truth. And we have to change what they understand. Those are the messages I feel like sometimes it's internalized, and that doesn't feel good. And that's not a good experience. People have and obviously, that doesn't lead to trust.

13:40

Dr. Odette Zero: I think that using the two diabetes as an example, I think that the way we talk about the ideology of diabetes with patients is very punitive. It's always about diet, and eating too much sugar and not exercising, I think, inherently feel punitive to patients, especially if their understanding of how they develop diabetes is different from ours. And I think that they have a different understanding. If we're not able to bridge those two understandings, then how are we expected to move forward in that many meaningful ways? And, yeah, I think that in terms of the susto analogy, I think there is a lot of validity to both understandings. I think that yes, obviously, like in Flint Earth distance, we know this. But I think it's really important not to discount the patient's experience of their illness and the fact that so still is often a big event, a very traumatic event that at times and if someone experiences a traumatic event, like a partner dying or being robbed, couldn't that lead to mood changes that would also lead to different lifestyle behaviors or lifestyle habits for increased cortisol levels. If someone is going through a really stressful time in their lives, thinking about how the cortisol level pathway could also be related to insulin resistance, like, do you really want to go all the way to like more of a biomedical approach? I think that a lot of the understanding of people and patients, I think there are a lot more connections to the patho-physiology than we think. But I think that it doesn't even matter. I think what actually matters more is just meeting the patient where they are. And I think that listening and acknowledging their understanding is the most important thing, and then using that as a platform to create a shared understanding.

15:31

Raj Sundar: I think that using the two diabetes as an example, I think that the way we talk about the ideology of diabetes with patients is very punitive. It's always about diet, and eating too much sugar and not exercising, I think, inherently feel punitive to patients, especially if their understanding of how they develop diabetes is different from ours. And I think that they have a different understanding. And we're not able to bridge those two understanding, then how are we expecting to move forward in that many meaningful way? And, yeah, I think that in terms of the susto analogy, I think there is a lot of validity to both understandings. I think that yes, obviously, like in Flint Earth distance, we know this. But I think it's really important not to discount the patient experience of their illness and the fact that so still is often a big event, a very traumatic event that at times and if someone experiences a traumatic event, like a partner dying or being robbed, couldn't that lead to mood changes that would also lead to different lifestyle behaviors or lifestyle habits for increased cortisol levels. If someone is going through a really stressful time in their lives, thinking about how the cortisol level pathway could also be related to insulin resistance, like, do you really want to go all the way to like more of a biomedical approach? I think that a lot of the understandings of people and patients, I think there's a lot more connections to the pathophysiology than we think. But I think that it doesn't even matter. I think what actually matters more is just meeting the patient where they are. And I think that listening and acknowledging their understanding is the most important thing, and then using that as a platform to create a shared understanding.

16:40

Dr. Odette Zero: So for me, what I learned that illness narratives was, how powerful it can be to create space for someone to just listen to their story. And that's it, not to comment not to clarify, not to try to problem solve. And that is something that I try to take with me in medicine, where I think the framework in which we approach problems is for my problem solving angle that we're taught to do. That's how we solve multiple choice questions, which I think are a great way of learning medicine. And that molds our minds into this, like problem solving, or people who are drawn to being problem solvers ended up in medicine, do you think people who all they want to do is someone tells you a problem, you instantly want to fix it, that doesn't work, because you barely understand the context, you barely understand the person you don't understand the problem, you're just coming in very top down and trying to, at times enforce your worldview, your perspective, your understanding of their disease, not understanding their understanding of their own illness. So I think that the experience I have collecting illness narratives and realizing and it's understanding how meaningful that can be for people to have that space. And then Arthur Kleinman is like the father of medical anthropology. And he has a whole book about how illness narratives make meaning out of everything, and actually part of what it means to go on through life, and to handle the fact that diseases can just disrupt our lives completely. We see that all the time with our patient, there's so much suffering involved in the illness experience, and illness narratives, creating a cohesive story of this is what happened to me. And this is how it made me feel. And this is where I am now. And this is what it all means. Actually making sense of disease actually helps people overcome it, and make process it and also push through it. So Arthur Kleinman talks a lot about the healing that can happen with an illness narrative. I think that's what the main thing of what I take with me is trying to not be a problem solver, just trying to be an active listener, and realizing how hard that can be going through medical training and being thrown out another path of being not the listener, but the doer, when sometimes doing also can cause harm more often than not.

19:11

Raj Sundar: Yeah, that was beautiful. I think I'm reflecting on how much we use the word "active listening" as a way to problem solving. I think in medicine, even active listening, we say, Oh, you actively listen, then you can problem solve, and then give them a solution. And what are the assumptions we hold of what the patient or the person in front of us really needs at that moment? Because we assume every visit should be a problem-solving visit, when that may not be the case? I don't think we ever consider that. And what does it mean to consider that and build a system to make room for just relationships with listening and healing in that way, for nothing actually ends up being "solid", right?

19:53

Dr. Odette Zero: Then, in the end, I think that we're actually maybe even doing more for our patients when we are otherwise and they kind of tie sit nicely with this idea of taking care of undocumented patients when I was doing those illness narratives in Guatemala specifically in a place that was rural and with a lot of machismo culture where men had a dominant role in women. So many of the women that I interviewed told me, they said, You're the first person to ever asking you that question. You're the first person who's ever sat with me, and listen to me, you're the first person that I've ever told that story. And I remember being very grateful that I was able to hear those stories, and also just a profound sense of injustice that I think that's just a small example of that we live in a society where we are not prioritizing people stories, or not prioritizing the listening to those. And I think that thinking about documented folks in the US and their stories of trauma, whether they're fleeing from trauma in their home countries, the trauma of arriving to the US, and then coming to the US and realizing that their journey was going to be continually fraught with trauma, and discrimination and stigma and fear, so much fear. There's a lot of suffering there. And then we meet patients, and there's just a million things to do. And we don't usually have that feats and time to hear their story get to know them. And another big thing of for me, just like growing up in a Latino household and illness narratives was how important relationship building is for every patient in particularly before the Latinx community that when people come to the doctor, you're wanting to create that relationship. And not only anecdotally, but also like from my family experiences from my research. There's this kind of recurrent thread that, like people want to be treated as a person. They want their doctor to open the door and have a couple of pleasantries involved. They don't want to jump right into the Okay, or how's it it's in this they want to? How's your dog? How's it going with your church? How are your plants growing in your home? How's your cousin, that kind of relationship piece is so important in terms of patient centered care for undocumented folks, but also like Spanish speaking, folks, in general, that is such an important piece is the relationship building and the kind of just setting aside like one minute, the first minute of any patient encounter, just to making them feel comfortable in this space and feeling safe and comforted?

22:29

Raj Sundar: Yeah, I love it. I want a health care system like that. And I want you to be my doctor. So the idea of approaching encounters with culturally responsive way, right, especially for Latino patients who face much she's one their own culture is very important. And I want to take this moment to transition to taking care of undocumented folks, you know, when a labor contacts that there are over 11 million undocumented persons in the US. And the thing about being undocumented is that you are undocumented, and you're working in physically demanding jobs, sometimes dangerous jobs, constructions, landscaping, factory work, restaurant work. You've almost always experienced severe trauma crossing the border. If that is how you came to the US, then you experience further trauma living in the US, because you have fear of deportation, financial stress, language barriers. And you've never addressed often the psychological, physical, and sexual violence that you experienced crossing the border. And they carry all these risks of trauma they've experienced. And sometimes this can lead into decision making. This is an uncommon situation. But there was a situation that was written down in an article about someone who decided they didn't want chemotherapy for breast cancer, because she had a child that was not here with documentation. So she was worried, even if isn't concrete, or an imminent threat, she didn't want to risk it. It's just that fear can lead to delays of care, and avoiding care overall. You've done a lot of work with undocumented folks. Tell me what am I missing in the description of the context and what it has meant for you caring for undocumented folks?

24:23

Dr. Odette Zero: I think does a very great overview in terms of bail out multiplicative vulnerabilities of undocumented folks. And the fact that their experiences are so multifaceted in ways that myself as someone who's documented and will never truly understand. And I think a lot of my work in medical school was working with undocumented women who experienced intimate partner violence in their experience being undocumented and also experiencing violence and how their legal status affected the whole experience. And I think that especially when Trump was president, there was just this overwhelming fear. For people who didn't have papers. There was talk that if you were at a clinic and ice officer could just ask for someone and I was working with clinics trying to figure out how to legally get around showing them where this person was, and thinking of like sanctuary sites and thinking about that. I know people who are free to go on the bus, because if they go on the bus, they'll be deported, or women who are in the EDE with bruises and fractures and carrying doctors that are asking them, like, what can you tell us what's going on? How can we help you, and just being so afraid of deportation? And I think that for mothers specifically who are undocumented fear does not come from them being deported this year is comes from them being separated from her children. And that is the most overwhelming fear that any mother can have. And in the situations of the women I was working with this year was compounded by the fact that if they were separated from their children, they would be left in the hands of the person who was abusing them. And feeling a sense of feeling trapped. I'm going to generalize here, digging just about the Guatemalan context, domestic violence, intimate partner violence, and there's research on this is just not criminalized in the same way that it should be. You don't call the police and Guatemala because of domestic violence, because you're not necessarily sure if they will be helpful in the situation actually harmful, if they will believe what's going on. And the same thing happened in the US, unfortunately, where because of cultural barriers, because of language barriers, because of discrimination and sexism. Women don't know who to turn to. And they're afraid that if they involve the police, that this will lead to deportation. They fear that if they involve doctors that will lead to deportation, separation from their children. And I think that as a medical community, we don't know a lot about the legal system in terms of how the ramifications on undocumented people, what benefits that they're accessible to what legal statuses are they applicable for. And the same goes for our patients where they also don't know their legal rights. When you go across border patrol, when you're applying for asylum, there's no one person and there shouldn't be this person is saying, you as someone who is on US soil, you're not a US citizen, but you're on human soil, you have certain rights. And one of those, in this case, is that if you're a victim of a crime, whether it's a robbery or any sort of crime or domestic violence, because that's a crime that happened on US soil, if you cooperate with the police, that is a pathway to citizenship, and that called the U Visa. And there's so many other examples of these kinds of inherent legal benefits or access benefits they're very few and far between. But I think that we don't know the rights of undocumented patients, and neither do Leigh. And I think that's a place where some more education for both ourselves as a medical community, and also for our patients would be able to empower them to live safer in the US and feel safer in the US. I think we always kind of create a space, just acknowledge how hard it is to restart your life, from scratch in a place where you don't have community in a place where you don't know the language. In a place where in some states and us you can access a license, so you can't drive. You're reliant on public transportation, and maybe you're using a car when you're driving a car without a license procedure and thought undocumented or you can't access work, meaningful work or work that is safe for work that has benefits because you don't have a work permit or because you don't have papers, and all of that burden. It's so heavy on top of that compounding fear.

28:58

Raj Sundar: Yeah, I want to suspend people's maybe questions of what are the rights of undocumented folks. Because I want to reorient people to when people are harmed or suffering. It's our ethical duty of clinicians and health care systems to care for them. And that's just our duty. And we need to figure out how and how to do that in a kind of caring way. So many facets of being undocumented. Make it so it's hard to receive the care you've been one part you highlighted in one of your research papers is about screening for entrepreneur violence. You talked about already how there's fear of getting the care they need. And after facing that fear of showing up to a healthcare system, making a visit to see a doctor. We give millions of questionnaires, and we don't get the truth or the information. For example, we screened for inter-partner violence a lot and one question we often ask is, do you feel safe at home? Tell me what your thoughts are about that question. And is that enough to get the information we need?

30:07

Dr. Odette Zero: Yeah, long story short, I do not think that question is sufficient. They've done studies where they screen different types of questions and they ratify them. And they've all this, all this logistical stuff, where they figure out the right phrasing for probably typically a non-minority population. And then they're like, Okay, this is going to be the question that we asked in our screener. And I'm not against questionnaires. I think that they can be helpful, but they're very limited in what they're able to do. And I think that for intimate partner violence, particularly for undocumented folks, I think that there is so much inherent vulnerability in that experience. And it's all related to talking about with the fear. Just talking with all the different people that I've talked to, with my research and interviews, is that for many women, especially during the Trump administration, when they heard that question, their instant gut reaction was, "Oh, my gosh, I can't let them know what's going on. Because I don't want to lose my children. I don't want to be deported." In the medical field, we'll assume that patients trust us. And I don't think that is always the case. And I don't think that we should assume that either. I think that trust is built and trust is earned. And I think that sometimes we assume that we have trust, when we should be working really hard to earn it from our patients, as opposed to something that we have it. And that goes back to the relationship-building piece. And in first and foremost, this building would ship with someone who is fearful of medical system, fearful in of institutions. And people who are undocumented feel fearful of the doctor of the bank, any sort of institution that feels governmental is a place where they could be. And also, you're right in the clinic, what are we doing, we're collecting demographic information all the time. We're collecting their name, their date of birth, all of this information feels scary to go. And think that another thing that we don't do enough besides relationship building, and also earning trusts, and recognizing how precious that trust can be, is not acknowledging documentation status.I see it so often where, like, in the IDI or in the hospital, we skate around the fact that people are undocumented without needing it head-on. Um, so I've tried to do with patients whenever I see that they're self-pay. And I think it helps because I speak Spanish as well. And I have the accent and all these things. I always ask if they're undocumented, I asked if they don't have papers. I think this is just important for me to know. But this information is not going anywhere. I want to understand more about how you came to the US, I just say I don't care what your legal status is, I just want to take care of you. And that was an important information for me. And I'm not writing it down in electronic health record. But I think it helps me be able to help you better. And just normalizing it normalizing the fact that they're undocumented, no fact that I will never call the police. This is a safe and trusted state, where you can be in document and you can be safe, and then letting the conversation go from there. But I think it's also really important not to write in the electronic health record any information that could be requested by a legal entity. So to speak be mindful of the words that we use in the vocabulary and that we use when documenting patient stories as well.

33:31

Raj Sundar: Yeah, such an important point about normalizing and building safety the moment you see the patient and acknowledging that people don't have papers, and it doesn't matter to me right now. And you're not going to be in trouble. Because as you said, we assume people have trust or were fearful of going into that space. So we just don't even mention it. And it's clearly on people's minds, because it's on people's minds everywhere they go. And this is another situation where they could be at risk. So they're going to evaluate every recommendation every plan and this will this risk me being deported. And being away from my children, as you said, specifically, I want to go back to the actual questioning of understanding and listening asking about inter-partner or violence for people who are undocumented, specifically the Latinx population. You talked about earlier, that it's important to talk about just them as a person. How are you? How are your kids close on Suzie hos before jumping into, "the business" of the visit? Because it almost seems rude and that you don't care really about them? How can they trust you? The second part is the actual question of do you feel safe at home, even though outside of the questionnaire if we ask that sometimes you may not get the information that you're trying to get in. I think in the paper, you talk about giving more contecxt to it. How are you feeling with everything that is going on? We know the situation can cause a lot of stress at home. Because of this, we're asking our patients if they feel safe with the people they live with. A lot more words, did you find that phrasing helped create a space where people shared more compared to do you feel safe at home?

35:19

Dr. Odette Zero: Yeah, I think just like you said, creating context for the question, and also normalizing the question and saying, it's universal, that we're asking all people. That every person that walks in the door, because I think that if people automatically feel targeted, or feel judged, that also can decrease disrupt the relationship building. So I think coming at it from a place of trying to get to know the person before asking these incredibly vulnerable questions that require so much bravery and so much trust from the person. I think that I have talked to a lot of people, and it doesn't really matter, the phrasing, necessarily. I think what matters is the context. And what matters is the tone, and the body language and eye contact, and creating a space where people feel comfortable to share how they're feeling. And part of the other context of that is, if you have a strong suspicion that someone is experiencing domestic violence, and does not feel comfortable sharing that with you, I think that there's a couple of framing things that you can do to try to make someone feel more comfortable. That being said, I don't care what your legal status is, whether or not you're undocumented, I think that it's a part of who you are, I would never call the police as private, this is confidential. This is not going anywhere outside of this room. And I call it attention to the fact that there is misinformation. So I think in my research, there were so many examples of women being pulled by their partners who are abusing them, that if they told someone about what was going on, they will be deported. So a lot of misinformation, a lot of saying that you have no rights in this country. If you tell anyone, anything, you will be separated from your child. And often the children were born in the US and were US citizens, there was this kind of push and pull that you are undocumented, your kids are documented, I am documented. We have power here, you do not have power here. So that's another theme, giving power to people and empowering them to share how they feel and know that there are no repercussions. And I think that comes back to the problem-solving. Also, I think that there is also a fear that if you disclose about intimate partner violence, the doctor wouldn't do something about it, they're gonna say, you have to leave right now you have to go to a shelter right now, you have to leave your situation, the problem-solving doing when, with the cycle of domestic violence, it's a journey that people are on. And very often the person has experienced that, that violent paths to being ready to leave that situation. And they might come back to that situation. It's a very cyclical manipulation. The cycle of power and control. So just acknowledging that you're just there to listen and not do and that there are no repercussions that we can just keep talking about this every time. You just want to know that you're safe. And prioritizing, knowing about the fact that domestic violence shelters are available for people who are undocumented. Which people don't know about, that there are legal options. One thing that I'll tell people that they do say, Oh, I'm experiencing violence, and I thank you so much for telling me that I really appreciate your bravery. And I want you to know that if you feel unsafe, you do have rights in this country, as someone who experiences domestic violence, you have access to domestic violence shelters as someone who is without status. And we don't do this enough, but going back to talking about legal options for status. There various different ways people get citizenship, besides asylum, and asylum is for people who are coming from their home country, fleeing persecution, fleeing violence, there's a very specific definition for asylum seeking. And there are very specific categories that people's experiences can fall into for to be legal and for them to actually be able to apply for asylum and have to apply for asylum when they get to the US best period of time. It's all very complicated because we're creating barriers people to get legal status. Of course, it's not meant to be easy and lose asylum. But there's also the Violence Against Women Act, which was passed in the 1990s. In recognition of the fact that people without status, without legal status in this country, were experiencing crimes specific intimate partner violence, and due to fear of deportation, we're not disclosing and this is a crime in US. So based on all that violence implement Act was passed And that grants legal support for nonprofits and also creates a system in place where undocumented folks can apply for citizenship if they experienced domestic violence in the country, or if they experience a crime minutes country or the TV set, which is for people who have experienced trafficking, either sexual trafficking or work trafficking. So I think for medical providers who are providing IPV screening for undocumented folks, I think knowing that there are legal options for citizenship that can get people a work permit, like people eventually green card, it's a super long process. But knowing that option exists, because for many people experiencing intimate partner violence were undocumented. Often enough, they have children, they are dependent on their abuser, financially. They have limited social support coming from another country. And just to make the US couple months ago, they're actually isolated by abuser more often than not from making social community and making community in general. Because they're undocumented, they don't have access to a driver's license in most states. Because they're undocumented, they don't have access to work, they can find there are options, but they are not safe options, or their home life. Their partners preventing them from working outside the home, they are afraid to access institutions that would help them. They're afraid to go to the doctor because they're afraid of how much it will cost. Or if the doctor is gonna ask them questions they don't know how to answer because they're too afraid. They're afraid to deliver in a hospital because domestic violence usually increases during pregnancy, if this is like very horrible trend that had been documented across different patient populations. And we're showing winning stories of undocumented women who are pregnant. And this fear that once they deliver, the baby was taken away from them. That their partner would tell someone that they're undocumented, and the fact that their baby had legal status will mean that they would stay here and not be with them. And then when we ask someone that question of Are you safe at home, we're not realizing everything that's going on behind people's head. Every single fear, every single misconception, every single assumption, so much fear from everything that they've experienced. Coming to the head, and then fearing that this is too risky to say anything, I don't know what's going to happen. So to try to sum up what health professionals can do a couple things, initially, relationship building before asked the question, creating context to why we're asking intimate partner violence, and what we're actually asking in a way that makes sense to the patient. Talking about the fact that whether or not they have when other experienced domestic violence, there is support for people who are undocumented, that there is legal support, there are social supports, and describing what those are so that people feel empowered. But if they do share something, there are options for them. I think that this is a very microcosm on one particular topic. But I think there probably so many questions that we ask medicine, that are very vulnerable and hard questions for patients to answer. And we think grasping the simple question, and then there's a whole world going on, in our patient's mind. And then we just hear yes or no question.

43:33

Raj Sundar: That was a great summary. Thank you for summarizing everything like that. And I'll add yes to the questionnaires. Because one, I think, often the questionnaires I see, you know, did they are created for a general population, and often aren't culturally relevant or responsive to specific populations. And two, as you noted, also how it's administered. Because I think everybody acknowledges the importance of these questions, and it becomes so routine and rote like you're looking at the EHR while asking, do you feel safe at home? That happens so much? You said, it's so important to look at the patient and make eye contact? And I'm sure everybody's nodding their head? Yeah, obviously, it is such an important question. But then you see how it's actually done in the reality of health care systems. And it's not done that way. So the obvious things are done. And that makes it hard for patients to ever tell you honestly or build trust. When you're asking these questions that have such heavy answers, as you said, Do you feel safe had all the things that's going in the patient's mind and mind about this specific question, and they're not going to say no, because you're not even looking at that when you're asking you're already on to the next one. So being careful about that. The last question that I have for you Odette is about system level advocacy. When I was preparing for this episode, there is a question posed about how do physicians or clinicians advocate for patients? This has been discussed in many contexts. But sometimes people are divided into two components of advocacy. One is called agency, which is you're working on behalf of the interests of an individual patient, like this patient's prior authorization for medication didn't go through. I'm going to advocate for him and get it because it's so important. And then activism, which is clinicians advocating from system level and social change, because of what we're witnessing. The second part, there was a lot of controversy, and I think still is about what is the appropriate role for a clinician in that space? I think people skew towards yes, we need to be active in policy and system level changes, because so many problems that we witnessed at the individual level is because of system level problems, and for not advocating for change there. We're not actually helping the patient, nor we're being effective in healing. So personally, I do believe that we need to be activist in the system level to make change. What does that look like for undocumented patients from your perspective.

46:17

Dr. Odetter Zero: I think when I worked with undocumented patients, that family medicine physician that as a medical student, and add defaulted researcher. Like in every single different context, I think that because of the system, we get, I feel like as someone who's providing care, so much of my job just gets bogged down by the first thing, you said that you didn't be the filling out paperwork and advocating for them. And oh, my gosh, I'm calling the breast specialist because they really need to be seen by you. And I've done everything and like sitting down and filling out the paperwork with them after 5pm, because everyone else has left. That's where I'm at right now. And I think that it's so hard because undocumented folks have so many barriers to care. I think that so much of that fall on the patients' shoulder to burden. And wanting to shoulder that burden with them on an individual basis is where I'm at right now. And I think that is where a lot of my time ends up going thinking about individual patients and how to help them get the care that they need. In a broken system. I'm trying to do my best every day. And before residency, I just had more time for it. And I feel like physician Nighthawk feel like residents and early physicians who feel that way were in previous lives before they were in medicine. They had the space and the capacity to do advocacy, to write op eds to work with community organizations on a longitudinal way to protest there's literally a million ways to do activism, which is amazing, because I think that they all have their place. And I think they're all amazing in terms of bringing about change. I think the burden of documentation, and during medicine and trying to do individual advocacy for patients comes to the detriment of having the time the space to also advocate for patients on a larger scale. So I think that's something I'm very mindful of in terms of thinking about my career is how to create space to do advocacy, and be on the ground in quotes, where I'm in the room with patients working with nonprofits, trying to meet people where they're at. And I think that the system itself doesn't create space for making a system better. There isn't space in our work in our life to do that kind of activism. And I feel like so much of activism happens on my free time. I'll glitch because it's something that I care so much about. It's the pleasure. And it's an honor to be able to try to help as best as I can. But there is no space for that in our work schedule. So what happened on people's weekend, the happens on the after hours after work. And it's also hard to organize as well, because I think we're all so busy. And we're all pulled in so many directions that it's difficult to organize. And I think that one individual can only do so much and I think we need to bring more collectively together, not only where you're in.

49:18

Raj Sundar: Yeah, I think I'll end on a note of this. Like we all have seasons in our life. Because even you have done these wonderful things in helping specific communities in the ways you could with the illness narrative work prior to what you're in right now in residency. And there is life outside of residency one where the season of life looks different with more space and time. But for some people can still be busy because you have families you have maybe your personal health like so things can just fluctuate up and down. So it can also depend on each day week, or month.Yeah But there is hope in that we're all working on this together. So we support each other and build relationships to do this together. Always easier said than done. But it is possible, because that's the only way we can continue to do the work we're doing. And I often talk about how hope is not just a feeling but an art skill that we actively cultivate every day, because we've imagined a better future. And we patiently work towards it together. So I want everybody to hold on to that note of hope. And Odette, even if you don't feel like you're making system level change. This was an amazing conversation. I think people will have learned a lot from this, I think an oval inform a lot of people's care, and make the difference that you may never get feedback on, even if it's a single patient that finally got the question about inter-partner violence in a way that they felt like they could be honest about. So thank you.

51:03

Dr. Odette Zero: Thank you. I appreciate it. That was beautifully said. I feel more hopeful already.

51:07

Raj Sundar: Thanks again, everyone for joining me on another episode of Healthcare for Humans. If you liked this episode, as always, I ask you to please share it with one other person, so they can also hear it. I'll see you next time.

51:22

Speaker 3: This podcast is intended for educational and entertainment purposes only. Views and opinions expressed in this podcast do not represent any of the participants' past, current or future employers unless explicitly expressed so. Always seek advice of your physician or other qualified healthcare provider with regard to your own personal questions about what medical conditions you may be experiencing. This Healthcare for Humans project is based on Duwamish land that makes a regular commitment to Real Rental Duwamish.

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