Day 2 Plenary Paper Presentations: Autonomy, Consent, and Decision-Making in Complex Care

All right, good afternoon. I'm very excited for these last excellent talks that will close out what's been an absolutely wonderful conference. We are going to change the order a little bit. We are going to start with Sophia Cohen's talk, what defines a goals of care conversation for surgeons? Sophia is a fourth-year medical student at Washington University in St. Louis who is finishing up a dedicated research year with the Center for Humanism and Ethics in the Surgical Specialties before starting her Master's of Science and Bioethics at Columbia University this upcoming fall. Her research interests include medical ethics education and pediatric ethics. Sophia hopes to use her bioethics education and research along with her medical school education to advocate for and provide quality equitable health care in in her future career endeavors. I'm going to put a plug out that we want to recruit her back here for pediatric residency at the University of Chicago. So, anyone who knows anyone there, please tell them about Sophia. >> Thank you so much, Dr. Sachs. You're I actually rotated on Pete's surgery with him back when he was back at WashU and it was very memorable. So, thank you for those kind words. So, at this point in the day, I'm sure we're all ready to revisit what our goals of care are and many of them probably involved the exit, but I'm going to ask us all to stay just a little bit longer and we can revisit those at the end. Today, I'm going to be discussing what a goals of care conversation in this looks like in the surgical field. I want to thank my mentors, Dr. Kopar and Dr. Hahn for their mentorship and support throughout this project. the green button I have no relevant disclosures. So, at the core of recommending surgery for a patient is the belief that the procedure will improve the patient's condition in some way. However, physicians and patients alike can get so anchored in treating a discrete problem that they neglect to consider the actual implications that the surgery will have on the patient's overall health. Little research has been done to look at how frequently physicians have goals of care conversations with their patients and what these conversations consist of. Our goal was to learn more about the opinions that physicians in surgical specialties have on conducting goals of care discussions, including how they define goals of care, what factors influence a goals of care discussion, and how they conduct and train residents to have goals of care discussions. A 10 to 15-minute Qualtrics survey was emailed to surgical faculty at WashU. In the survey, basic demographic data was collected followed by a series of multiple-choice and short-answer questions exploring participants' views At the end of the survey, respondents could opt in to participate in a one-on-one interview further elaborating on the questions that we asked. A total of 52 surgeons started the survey with 38 completing every question. A wide variety of specialties were represented with the most respondents being from trauma / acute critical care surgery. Each participant was asked to estimate the amount of time spent in each of the clinical settings that are listed. This graphic shows that the mean percentage of time spent in each of the settings illustrating a relatively equal distribution with the elective setting being slightly more represented. Oops. Wrong order. Um Of the 39 surgeons that answered the question, "How important is it to ask a patient about their goals? Every one of them responded that it was important with 64.1% responding extremely important. However, 11 of 39 respondents reported not asking patients about their goals prior to surgical consent with 30% of these reporting the reason for not asking as {quote} "irrelevant to treatment". Participants were asked how they ask a patient what their goals of surgery are and a majority included as part of the informed consent process and during the initial consult consultation. While only about half responded when they don't think that the operation would change a patient's outcome, but it aligns with the patient's goals. Regarding the content of goals of care conversations, a majority of participants responded that they include reducing pain, improving quality of life, prolonging life, best case worst case scenarios, and the impact on ability to work. A minority answered that they include discussion of insurance coverage, financial constraints, burden to family, and cultural implications/factors. When asked if certain patient factors influence whether they discuss goals, 26.3% responded no. While the remaining picked at least one factor that did influence whether they discuss goals with risk of surgery/treatment, prognosis, diagnosis, and patient's age being the most. The most common factors considered when conducting a goals of care conversation were prognosis, diagnosis, and treatments available to the patient. Only 12 of 38 surgeons considered their own comfort with the operative options when conducting a goals of care conversation. A A of seven interviews were conducted over Zoom. Specialties represented included trauma and acute critical care surgery, transplant surgery, pediatric surgery, plastic and reconstructive surgery, vascular surgery, and colorectal surgery. Each interview explored a core set of three questions. What is the definition of goals of care? What patient and surgical factors impact if and when a goals of care conversation is held? And how are trainees educated on goals of care? Informed by grounded theory methodology, transcripts were coded using NVivo software. Initially, open coding was used to label excerpts. Then, axial coding was used to group excerpts into Strauss and Corbin's coding paradigm. The codes included phenomenon, causal conditions, intervening conditions, strategies, context, and consequences. After grouping excerpts into these categories, theoretical coding was done to relate the codes to each other, resulting in the diagram depicted here. This diagram provides a useful conceptualization of all factors involved in defining goals of care, conducting goals of care conversations, and the impact implications of goals of care conversations. Now, let's delve a little deeper into each of the components. Starting off with phenomenon, or the central concept at which the actions and interactions are directed. In this case, our phenomenon was how are goals of care defined. In defining goals of care, interviewees were prompted to compare goals of care with informed consent. The consensus was that there are two they are two different entities, but there's some overlap. While informed consent requires discussion of an intervention, goals of care can happen outside of discussing a procedure. As one interviewee put it, informed consent is putting out the facts, and goals of care is what you want to do with those facts at each point in a patient's journey. The causal conditions, or what leads to the occurrence of goals of care conversations were grouped into six categories based on interviews. The circles and arrow size correspond to the frequency of each subject that was covered. The most mentioned causal condition was when there is a change in a patient's clinical status. For example, if a patient's tumor has metastasized and is now causing unstable vitals. Intervening conditions are factors that influence both what a goals of care conversation looks like and the strategies used to conduct a goals of care conversation. A significant intervening condition that was mentioned by almost every interviewee was the inherent difficulty of the conversation itself. Thinking of what you would want or what your loved one would want in a three out of theoretical situation is hard and talking about death is difficult. And depending on the cultural context might be frowned upon. All of this impacts both how the physician approaches a goals of care conversation and how a patient and our patient support system and uh participates in a goals of care conversation. What a goals of care conversation is also varies according to the context of the situation including who is involved in the goals of care conversation, whether surgery is even a good option and the type of surgery being discussed. The strategies used to conduct goals of care conversations also vary with the most frequent strategy strategy mentioned being framing the conversation around a patient's goals or wishes or desires. Interviewees also emphasized the importance of a multi-disciplinary approach involving colleagues within the specialty, other specialties, interprofessional teams, and the patient's family and support system. Lastly, the consequences are the results of the care goals of care conversation. Because the interviews were more focused on defining and characterizing goals of care, the consequences were not covered as extensively. However, it was clear that the ways in which goals of care conversation are structured and occur impact three main parties: the patient, the healthcare providers involved in the care, and the caregiver such support system of the patient. So, putting all of these categories together, the following integrative integrative model was made, which essentially provides an outline that can be used to approach a goals of care conversation given a specific circumstance. So, in conclusion, the survey responses and one-on-one interviews established that surgeons agree that goals of care conversations are important. However, there is quite a bit of variability as to how they define goals of care conversations and when / how they believe they should happen. Another notable finding from the study is that, despite the importance that respondents agree goals of care conversations have, more than half reported not having had any formal education on how to have a goals of care conversation. So, currently we are conducting a second phase of this study that is surveying residents on their opinions and understanding of goals of care and whether they feel they are being appropriately prepared to conduct them on their own in the future. In the initial data collected, already a disparity is seen in how residents characterize goals of care compared to attendings, with residents believing goals of care conversations are warranted in more situations than attendings. In a focus group conducted with three residents, the most significant reason they attributed to their lack of confidence in conducting goals of care conversations independently was the lack of opportunity that they have for feedback. With one resident stating, quote, "Debriefing after is important because I feel like I've had enough practice to the point where I feel much more confident in having them, but whether or not they're effective has yet to be determined. Moving forward, we are working on ways to improve ethics education, including more opportunities to receive immediate feedback in clinical scenarios and standardized simulations that involve ethics discussions. Thank you for your attention and I'm open to any questions, critiques, etc. I also noticed that at the day, so >> [laughter] >> I do have a question for you before you So, who's who's teaching these residents, right? They're learning from the attendings who say that they don't know how to do it. So, how do we break that cycle, right, effectively? >> Yeah, that That's a wonderful question. Um, and um, two two things here. One is that we also want to improve the education of the attendings. Um, and so we have um, separate studies that are looking at ways to um, educate attendings as well on these concepts. Um, luckily at our institution, we have um, a couple of uh, physicians that are specialized in ethics, um, some coming from here. Um, and um, they right now are leading the initiative, but that is um, correct in that when speaking with these residents about experiences they've had, they were able to say like, "Oh, I model my conversations a lot after one specific attending, and I definitely don't do what X other attending does." Um, so I think residents themselves are able to kind of also identify based off what they're learning and what they've learned in medical school as well, um, to differentiate. Like, that's something I want to model versus I don't know if that's the best example. >> Don't want to be known as the person who gives all the bad examples, I guess, huh? All right, our next talk is titled The Hidden Ethics of Adhesion: Reconsidering Informed Consent in Contemporary Clinical Practice. Nthona Kobu is an Assistant Professor of Law at the Louis D. Brandeis School of Law, University of Louisville, where he teaches Administrative Law and Health Law. His scholarship sits at the intersection of health law, bioethics, administrative governance, and artificial intelligence in clinical practice. Professor Nthona Kobu's research examines fiduciary obligations in medicine, informed consent in technologically mediated care, and the regulatory design of emerging health technologies. His work combines doctrinal analysis with interdisciplinary bioethics scholarship to explore how legal frameworks can safe- safeguard patient autonomy, professional integrity, and institutional accountability in contemporary clinical settings. In addition to his academic work, Professor Nthona Kobu regularly provides guest lectures and ethics-focused training sessions for clinicians in academic hospitals in South Africa, engaging directly with healthcare professionals on questions of consent, technology integration, and professional responsibility in practice. His scholarship has appeared in the South African Medical Journal and the South Carolina Law Review, among other venues, and he has presented nationally and internationally, including at the Ethics, Medicine, and Innovation Conference and Harvard's Petrie-Flom Center for Health Law, Policy, Biotechnology, and Bioethics. >> Thank you. Um, I am going to try to be as fast as I can um because I'm trying to catch um happy hour at 5:00. So, um most of us in this room um if I were to ask you um you know how how were you taught about informed consent about clinical ethics? Um most of us are going to say um we were we learned from our Blue Book and our Childress um and we know that um the standard is the patient must understand the nature of the procedure and um the authorization um must be based on genuine disclosure and understanding and that part is not controversial uh controversial. Um nobody in clinical ethics, you know, um is um disagreeing with that. Um so, the question I have right now, which is the basis of my presentation, is um wh- when was the last time any of us actually checked um whether, you know, that's the standard that is happening um in clinical practices um you know, outside of um you know, the textbooks and when we are getting the training. Um and because I want to you suggest you um today that we have built an entire infrastructure of consent um including based on forms, um signatures, timestamps, um legal documentation that looks exactly like um you know, what Blue Book um described, but when you look at how it functions, it functions um you know, differently. Um is it the large one? Okay, I have no disclosures. So, um what I want to show you um today is this is based off a real case and I got the consent from um the lady in question here. Um so, it was around 6:15 in the morning on a on Tuesday and a 50 a 58-year-old woman arrived for a hip replacement. Um she had she had waited for 4 months um to schedule this um operation and at that point she was anxious. Um she has already changed into um hospital gown um which um itself is kind of transforming, you know, um and um you at that point you stop being a person with, you know, um a coat and a bag and become, you know, in some sense a patient. So, a patient um access representative um came in into the room and approached her um and then handed her with a clipboard. Um on that clipboard there were seven forms requiring her signature and now this is um one of the basis of my presentation today. So, here um there is the clinical consent, you know, um here this is where they are trying to get her consent before she can go in and attend, you know, and get the operation done. Now, when you go through all of these documents, um one of them relates to um the treatment which she is about to receive. Um but then if you go to um the third form, it starts to talk about um arbitration to say that um if anything happens to you, um you waive your rights to a jury trial, um you are going to have to arbitrate. And then if you go through the other forms, they start they start to get more and more legal and they talk about different things, right? So, in this case here um if you walk in um after she had signed it, 20 minutes later um some somebody walked in, um one of the family members, and asked her, "Hey, um I saw someone coming in here earlier." Um and she was explaining that um they were giving her forms to sign and they were asked, "Okay, um what were you signing?" And she said, "Well, I don't know. I was just signing documents in order for me to get the treatment that I need to get um today." Now, the question in that case becomes um did she really consent um when she was signing that form? And if you think about it, um she was anxious. Um she's about to get um this major um, you know, um operation. Um it might be the biggest operation she has ever received um, you know, in the past. so she is scared and you know she's been waiting for 4 months so in this case could she have gone through the entire documents like the entire seven forms and read each and one or each one of them and tell the nurses to wait while she's still reading. And you know she couldn't do that cuz she was worried that what if she takes more time and then she end up you know having to reschedule the operation you know and she didn't want to bother you know any other people. So this is where I this concept I I talk about here on adhesive consent this is where it comes in and I am taking this from a law of contracts principle where is which is the contract of adhesions. Basically the contract of adhesions take it or leave it type of contract like for example if you have Netflix they regularly change their terms and conditions now every now and then and when you try to log in they tell you to you have to agree to the new terms and conditions before you can proceed and watch whatever show is playing on Netflix. So I'm sure none of us here or maybe a few of us have actually taken time to go through all of those documents all of those terms and conditions and then we then sign afterwards. Even if you do decide to take your time and read like 17 or 20 pages of the updated terms and conditions there's no way for you to scratch out some of the things you do not agree with. You are you end up with two choices it's either you are going to sign the new terms and conditions or you are just going to cancel Netflix all together. So most of us we end up signing and this doesn't apply just only on Netflix it applies to our cell phone plans and all of these are important things in our lives. So I use this now here to try and you know apply it in the clinical perspective to the lady who was in the waiting room who had already changed and she was presented with these forms for her to sign before she can get the treatment that she needed. Now, in this case, she could have taken time and I do understand she could have taken time to, you know, read the entire seven forms and then sign them or raise any concerns. But the problem with all of that is one, do we know if she was going to understand any of those documents? Cuz if you read some of these documents which are given to patients, they are written by attorneys and risk management personnel. Sometimes they do not even, you know, discuss or have consultations with the physicians or with the clinic clinicians or, you know, ethicists in the hospital. So, they just design all of these forms in order to protect themselves and the the hospital from any possible risk when if the patient decides to sue them. Now, so if you look here on the screen, um you'd see how, you know, informed consent has, you know, evolved over the years. And the first one is in the in 1920 when the first case of the New York hospital case when they were Justice Cardozo said that every adult being, you know, has the right to, you know, consent to whatever happens to their body, you know. So, this was the first case and then if we move forward to 1972 in Canterbury versus Spence, this is when now the court decided to be more patient-centered in this case and then they started talking about informed consent. So, the first case they only mentioned on the word consent, it was not informed. And then 1972, the court started using informed consent which is different and then the court also explained how consent and informed consent is different between the two. And then in the 1980s, that's where, you know, trouble started. And then we started to see more litigation against the doctors, you know, and the hospitals where patients were suing them. And most of the time they were arguing that there was no informed consent. So we had a lot of cases against the hospitals. And then which then led to the hospital department to create these risk management departments and legal counsels to create these, you know, forms and document processes which patients have to sign whenever they Excuse me, whenever they get any treatment from the hospital. Now, if you look today, we have one of the biggest problems here is we've been seeing on the news about the literacy program and the literacy rates in the in the US and how people, you know, even at college level they still cannot read. They can't still they do not even understand. So now imagine you are presenting a form which is drafted by a by a group of attorneys, not just one attorney, which is aimed at protecting the clinician and the hospitals. And now you're giving it to someone who doesn't understand what they are reading, you know. Some of those documents even for us as attorneys, when we are to read those documents, we have to take some time, you know, and do our own research because they are too complicated. So this is where we are today. Now, if we talk about adhesive consent, there are six features which I have identified. In this case, the first one is standardization, which is the same form goes to every single patient. So if, let's say, one a person who is a who is a physician goes to a hospital for whatever operation, they are going to get the same form as I would get. Um so now, you know, and now a person who has um like no higher education or who never went to school, they'll get the same form and they have to sign all of those forms um as patients. Now, those forms um they treat all the patients as if they are the same, they have the same level of education, they have the same level of understanding. And then we have now the second feature, you cannot negotiate any of these terms. Um if you like the hospital which I usually go to, they use MyChart and you you can um you have an option to check in before your clinical visit. So, when you check in on MyChart, there's no way for you to scratch off anything you do not agree with. You uh you have to submit the entire form as it is. So, I usually refuse to check in online and then I go on to um you know, like uh when I go there for my appointment and then they will I ask them to print it out and then when they print it out, I tried this one time I tried to scratch out some of the terms which I didn't agree with like um that they can share um you know, my health data and all of those things. I asked them not to do that and I do not consent to that and they told me that there's nothing they can do cuz it's part of the form. They are not authorized um to accept any forms which have been um tampered with. So, I ended up leaving on that day. And then the third part is complexity. These documentations um they are too complex, you know, um so patients do not even understand them, they do not um understand, you know, the entire purpose of these documents and we also have to look at the comprehension as well. And um the other part is power imbalance. Now, we have um the hospital which is which has a lot of power, you know, over the patient and now the patient, even if they do not agree with any of the terms which are contained in the agreement, they are still going to sign these um documents cuz one, they do need um the medical help. Um also, the hospital has too much power over them as well. And then there's also agency as well. Some of these um situations, they are agent and the patient cannot just decide to um say, "You know what? I'm going to find another doctor or another hospital." Cuz patients have to go to work, you know? Maybe they That's the only day they could have like, you know, got it left work to go and get some medical help. You know? And then there's also um uh bundling here, which is one of the biggest problem that I um have faced is if you read these documents, um the first form may have informed consent or talk about consent, but then the second form will talk about arbitration and the other forms will talk about all of these other things. And these are all confusing to a patient who doesn't have time to read all of these things. So, the case that I have been making here um about um against um this adhesive consent, one is autonomy has been diminished in this case. Right? So, the patient here um they cannot recall what they were what they authorized um the moment after signing. Cuz if we are talking about real informed consent and you have explained the terms to the patient and they have understood those terms, then it's easier for them to remember what they were talking about earlier on. And then number two, we also have dignity compromised. Now, imagine a patient um who doesn't understand what's written and now they have to go and stand up and tell the nurse or whoever is in there while in a room full of other patients and say, "Hey, I cannot read. I do not understand any of these forms." Um they are going to feel ashamed and they might end up just signing and not even raising any problems here. And then the last one is trust. Um I Most of the time I use um one of the examples I use when I talk to my students is how I some of us men are too loyal to our own barber shops and our own barbers. Like we do not even cheat on them. We have one person who cuts our hair. So now here in clinical as well in in the clinical settings as well, if you trust your physician, you are going to want to go back to the same physician over and over again cuz you trust them. Um so now if now there's a problem the trust is broken, it's going to cause so many problems between the relationship between the patient and the physician. One, the patient might not want to come back to the institution or two, it might lead to you know the patient when they do not trust the physician, they might start even to doubt whatever recommendation is made by the physician in this case. So why does this persist? Cuz we have seen that it has been happening for a long time. On the one side here is institutional incentive and in this presentation and on the paper that I wrote based on this, the biggest criticism that I have is against the institutions and not the physicians because if you look at all of these problems, they are structural. They are caused by the institutions. They are the ones who are trying to protect themselves. They are the ones who are trying to make sure that they do not get sued. And one of the argument that I can get like a counter argument would be that if they do not have these forms, then they open themselves to risk, which is true. But then at the same time, the risk is at the patient's expense. And then the other one is we also have the digital. Here, if you look on this side, like we use my chart. You cannot edit any of these things and if you see some of the forms on the digital platforms, you cannot um you only have like it like maybe three options to choose from. Um there's no way for you to add your own option. So, you already have these um options which have been given to you already, and there's nothing you can do. And this has a high um you know um effects on telemedicine where patients are sitting at by themselves at their home, and you know they end up having to sign these digital forms without any um anyone helping them with them. So, um here what I what I I started to look at in how we can deal with these things here is one, if we look at um the institutional governance, um they have to be um a radical um you know simplification in this case. Like we have to simplify these forms. There's no need for you to uh give a patient um seven or 17 pages of documents to read before they can get um you know whatever health assistance that they need. You can send these forms to them before they even come to um the clinic, or you can you know um give it to them um electronically, and then um they can come and edit them or sign them when they get to the hospital. You know um the clinical ethics committee has to be involved in drafting all of these forms. It shouldn't just be um a some work for the legal department or the risk management. There should be um patient advocates involved as well in this case. And then um we also have regulatory interventions here. So, the state's health um you know departments, they can mandate you know um reading level standards. Um we have seen in other types of disputes like in this in dispute resolution and arbitration, um some states have decided to say that since everyone has been using um or making people sign these arbitration forms, you have to um tell a person that there's an arbitration form in the agreement before they even sign. So, in in this case with um consent here, you have to also let them know what they are sign signing. You have to confirm with them. You You have to ask them, "Hey, do you Did you understand what you are signing?" And then the last one would be the clinical process, and I know it's going to be a lot of work to say that the clinicians or the physicians have to read these documents and then disclose all of these documents to the patients. But the at minimum, what you can do is you can ask them, "Hey, did you understand the document that you signed?" You know, and if a patient says they do not understand, they have some questions, you can direct them to someone who can answer those questions cuz that can also build trust between you as a physician and the patient. And then Professor Kaplan gave me this last one recommendation to say, "You have to encourage patients to record the consent process and the consent conversations when you are asking them whether they do consent or not." Now, here the main argument is that these documents they are important, but they must serve dialogue and not replace dialogue. You should You should explain what's happening to the patient. You should explain what's good or what's bad. You should explain what's in there, what they are signing, you know, cuz just to give just giving a patient seven forms to sign and then thinking that you are done with the consent process isn't enough. Um thank you. >> I think we have time for one brief question. >> Hi. Um thank you for your presentation. I was wondering if um you had thoughts about like if if there's room for like stratification of these requirements. Um so like to differentiate someone going in for a major surgery versus someone going in for like a um just a yearly checkup where you know, if some yearly checkup, like if there's going to be a stratification um if if you see there being a stratification between like that that differentiate differentiates how uh uh the enormity of the procedure that's being considered for. >> Thank you. Um so in the paper um that I wrote um I actually made um one of the arguments that I made is that um we can try to differentiate between um different procedures, like if a patient is just coming in for a an annual checkup um or if they are coming for a major um surgery, um we can try and create different forms for that. But then what we have to do is the level of um you know, discussion or dialogue between the clinician and the patient has to differ in terms of you know, um how dangerous the operation is or the service that they'll be getting. Like someone who's just coming in for an annual checkup and that you won't be performing any um you know, surgery on them, you won't be drawing blood on them or doing any of the major things um that that is okay. Um but then where there is like you know, much risk involved um you do have to have a much larger um dialogue and explain everything to the patient. Thank you. >> All right. Our next talk is titled Depression and Autonomy in Advanced Chronic Disease. Dr. Jeffrey Poonkudy is currently an internal medicine resident at NorthShore University Hospital and Long Island Jewish Medical Center in New York. He did his undergraduate work in philosophy at Dartmouth College and graduated from Northwestern University's Feinberg School of Medicine with a medical degree and a master's degree in medical humanities and bioethics. He is most interested in the ethics of controlled human infection studies, environmental ethics, and assessments of capacity in the clinical setting. Dr. Poongkunran. >> Hi everyone. It's a pleasure to be here today. So, today I want to speak to all of you about depression and capacity in advanced chronic disease. And I'm an internal medicine resident, so how did I land on this topic? And it's really from a case that I saw on the ethics consultation service earlier this year that got me thinking about this topic. And I think the best way is just to dive right into the case. Okay. Also, I have no disclosures. So, this case is of a 73-year-old male. He has severe heart failure and he has a left ventricular assist device or an LVAD, which helps augment his heart's function. And he presented from rehab after a previous hospitalization. He's had multiple recurrent hospitalizations for various issues. He came in because of a wound and he was found to have a fever when he came in. He was diagnosed with osteomyelitis or infection of the bone and he had surgery and was given a long course of IV antibiotics. And now he's sitting on the medicine floor and he mentions to his medical team that, you know, he's had enough of of this and he would like his LVAD to be deactivated stating that he doesn't want to to go through this anymore and the LVAD is giving him a quality of life, that he finds unacceptable. He says quote, I'm uh existing but not living and the LVAD isn't really helping him. Um And notably, he reports difficulty sleeping. He says sometimes he wakes up in the middle of the night breathless, which sometimes happens in patients with heart failure. He has decreased energy, he endorses some fatigue, he has reduced appetite, he has diminished enjoyment of activities that he previously enjoyed. You know, he liked to go to watch movies with his family, but now he feels like he has to stay at home. And then some some activities that he feels like he can do like read books, he also feels like he's he's not really enjoying those activities either. Um and on physical examination, he appears a little more slowed both in speech and in his um uh in the way that he moves. Uh so this is the case and so I have three questions that I want to to sort of uh address here or like ask. One is does this patient have capacity to make this decision? Is the first one. Second, does this patient meet clinical criteria for a diagnosis of depression? I think that at first blush is a very, you know, either clinical or psychiatric question, but I think that is a question in this context that has ethical ramifications. Uh and three, if this patient has depression, how if at all does that affect their capacity to make this decision? So let's dive into the first one. Does this a patient have capacity? So we typically assess capacity, as I'm sure I'm sure all of you know, with the MacArthur Competence Assessment Tool. We assess their understanding. So he was able to understand that he had an LVAD and that it was helping his heart failure Um ability to appreciate or appreciation to recognize how that information applies to one's own situation. So, he understood that uh deactivating the LVAD would lead to his death in in the subsequent days and he understood how this would affect his family. He was able to reason about his quality of life and why he wanted the LVAD deactivated and he was able to express a choice over the few days that our ethics team saw him that he did want his LVAD deactivated. So, it seems that he meets the criteria for capacity. Um but what if he has depression? Um and does this patient meet uh criteria for for depression? And And maybe some of you have noticed what I chose to pick out in the the case presentation slide. Um Is it possible to go back? What? Okay. Uh so, I've put up here the criteria for diagnosis of major depression in the DSM-5 TR and uh the purple arrows, I know they're small, point to criteria he seemingly already meets. Um you know, he has diminished interest, he has weight loss, he has insomnia, and it seems that he meets this criteria, but criteria C also stipulates that this shouldn't be attributable to a medical illness. And I think that is an important challenge because I've seen patients with LVADs with his same level of heart failure that have much better functional capacity than he does. Um and it's very hard to tell what exactly is attributable to medical condition and what exactly is from a like primary psychiatric uh condition. And the reason I care about this or why I think this is ethically significant is because the patients most likely to request withdrawal of care are the same patients where this diagnosis of depression might be difficult. Right, these neurovegetative symptoms, the these physical symptoms within the criteria of depression might already be met with patients with decompensated cirrhosis or patients with end-stage renal disease on hemodialysis or patients with advanced malignancy on chemotherapy. They might already have those symptoms of fatigue or insomnia or reduced appetite. And so there's a risk of both overdiagnosis and underdiagnosis, right? We attribute all of them as having depression because they meet those criteria and perhaps then we subject them to a psychiatric evaluation when they're just requesting a routine withdrawal of care. And then there's probably a risk of underdiagnosis where we ignore those physical symptoms, attribute them to their medical illness, and then perhaps don't capture patients with depression who might benefit from a psychiatric evaluation before they make a pretty momentous decision to to withdraw life-sustaining care. Um Um and so I'm not the first person to to to think that, you know, our our criteria for diagnosis of depression is in the medically ill is difficult. Uh several individuals have brought up alternative criteria. The Endicott criteria 1984 aims to sub out some of the physical symptoms like change in appetite for tearfulness, sleep disturbance for social withdrawal, fatigue for brooding, psychomotor agitation for lack of reactivity. But the the studies that have looked at these things are are quite small and and there's been lack of validation on a large scale for and the use of any of these criteria for diagnosis of of depression. Um So, lastly, I want to briefly touch on uh you know, if our patient in in our starting scenario does indeed have depression, how does that affect their capacity to make this decision? Why why should we care that they might have comorbid depression? Um So, we know that depression can affect capacity, but not in ways not always in ways that are immediately evident in at least non-psychia- non-psychia- It not not in not always evident for the non-psychiatrist uh when they're doing capacity assessments, right? Because there's no um there's not always a dramatic alteration in that that patient's cognition. Um So, analyses have focused on how the depression might compromise a depressed patient's ability to appreciate the consequences of a medical choice that they're making. They may be able if a cancer patient is depressed, they might be able to tell you that chemotherapy and surgery and radiation are all beneficial for cancer, but they may also turn around and say, "But that won't help me because nothing helps me," right? They they won't they may not be able to appreciate um uh how the medical information applies to their own life. And and some empirical studies seem to point in the same direction uh that it's really the the appreciative capacity that's impaired. Um And some have even gone so far as to say our MacArthur model because it's so cognitive, maybe doesn't even capture the ways in which depression might impair capacity because depression uh leads to leads to significant, uh, changes our emotional states in ways that maybe aren't captured by our current, uh, methods of, uh, of, um, of assessing capacity. Uh, so, in conclusion, I want to quickly wrap up the case that we started with. Uh, we did have site, uh, psychiatry come by and evaluate the patient, and the patient, uh, was deemed to have depression, but not in a way that, according to psychiatry, uh, compromise their capacity. So, it was decided, in collaboration with all his different care teams, that he did have capacity to make this decision to withdraw his LVAD, and in the subsequent days, his family came to bedside, and his, the heart failure team came and withdrew his LVAD, and he passed peacefully. Um, but I'm interested in this, as I said before, because I think depression in the context of all the advanced chronic illnesses that we see in medicine, um, it can be difficult for non-psychiatrists to identify accurately, and I think there's a need for clear and validated methods of diagnosing, uh, depression in patients with advanced chronic disease, because they're the ones that are most likely to request withdrawal of care. So, it's important, ethically speaking, to know which patients need further evaluation by psychiatry for, uh, further scrutiny of their decision-making capacity, and which patients' routine requests for withdrawal of care should simply be honored, and their autonomy fully respected. Thank you very much. >> You're welcome. I have a question {slash} comment for you. If psychiatry had said that this person this person's depression is interfering with their ability to make a decision, what would you have done then? >> I think our team would have discussed potentially uh discussing trialing treatment with him to try to get him out of his depression if if psych psychiatry believed it was a reversible sort of thing. >> At what point would you have revisited that decision? >> I think that that's that's a difficult question. I think under their guidance, I think it takes takes a great deal of time for for at least treatment for depression to to show um signs of efficacy. So so it would maybe be weeks to months. >> What if their uh depression was refractory and in spite of maximal treatment, there was no improvement in their depression? They continued to feel like their life were not worth living. >> Yeah, I I then I'm not sure. That's that's a difficult question. I what to do in cases of refractory depression when patients request withdrawal of care. I I think and that refractory depression is impacting their capacity. I think that's that's a very challenging question and I'm not I'm not sure. >> For the expert >> Yeah. >> assist in the room. Good presentation. >> Thank you so much for bringing this topic up. Um it is hard. There's like an overlap. Um I'm a palliative physician and I think just like the comment, which is not the point of like the case itself, the LVAD, right? I think you see a lot of people. I think this gentleman was clearly a destination LVAD. There was no >> Yes, he was not a candidate for a transplant. >> Right. And so it is sad that there wasn't this palliative uh approach and I coming in with osteomyelitis, all these things. So I do think just for like the learners in the room, right? Like there's a lot of people we meet who are in destination LVADs and don't actually realize they have a destination LVAD. No palliative, they have no hospice. Um and so that's one thing. My question is, would it have felt different if he said no to the IV antibiotics? Would we have asked all of the same cuz right there's an action to turning off the LVAD versus an omission of not giving the IV antibiotics. And we see this a lot in whether it's dementia patients with dementia with osteomyelitis and the IV and the debridements and the this and the that. So I'm just curious for yourself, anyone in the room, like would it have felt different? And if it did then like why? >> I I think for me it it it might have felt more urgent if he uh if he didn't want the IV antibiotics because I think those address a clearly reversible medical condition and I think we would scrutinize his decision-making capacity more in that circumstance. Here I think because we know that the LVAD is destination and people routinely withdraw care for their like withdraw care for chronic illnesses because they don't feel like their quality of quality of life is sufficient. I think the for me the IV antibiotics maybe counterintuitively are are more deserve more scrutiny of their decision-making capacity. >> Yeah, I appreciate the counter because usually it's the this is I think that's really interesting and I appreciate you answering that. >> opposite. >> And I'm curious I would be curious to know if if I had to if I was seeing this patient >> Mhm. >> a psychiatrist >> Yeah. >> uh I'd like to know some of the history uh when did this uh what we're calling a depression, what sounds like a depression >> Mhm. >> when did it start? Uh when in the course of the chronic uh, debilitating illness that he have that he became that there were were signs of depression. They've been present How long have they been present? >> Yeah. >> Is there anything else happening >> Yeah. >> in his life uh, that might be precipitating the depression. So, it I I would think before I came to a decision I'd want to know a lot more of the history >> Mhm. >> of of how he got to this point. >> Yeah. >> And then, you know, that would it turn that would inform my ideas about what might be done >> Yeah. >> besides com you know, going along with his idea to to let >> The withdrawal, okay. Yeah. Yeah. No, but I It seems psychiatry did evaluate the patient and they they did that deep dive into when he he they looked at his psychiatric evaluation when he got his LVAD because there's a thorough evaluation at the time that the LVAD is placed. Um, they looked at um, when this episode started. So, it to to them it seemed like he was in an acute de- not acute, but like sort of subacute uh, depressive episodes had sort of sometime after getting the LVAD. >> And they I guess they're concluding that there was no treatment for the depression. >> Yeah. >> That would be effective. >> Yes. I think so. Yeah. Thank you. >> All right. Our next talk is titled pregnancy incapacity and the law, navigating advanced directives under state pregnancy exemptions. Madeleine Canale is a rising third-year medical student at the University of Florida College of Medicine. She is enrolled in the medical ethics and law track of the Discovery Pathways program, which has allowed her to pursue an in-depth study of legal and bioethical issues and their intersection with clinical medicine. >> Hi everyone. Thanks so much for being here today. All right. Um so as he talked about today we're talking about pregnancy and capacity in the law with navigating advanced directives under pre-state pregnancy exemptions. And I worked with Professor Lawrence Solberg on this this paper. I have no disclosures. All right. So a little bit about background. Obviously we've talked about advanced directives already thoroughly um throughout this conference, but they're legal doc documents that allow individuals to outline their preferences for medical care in the event that they lose decision-making capacity. Um it's a key tool for preserving prospective autonomy and it's grounded in the constitutional right to refuse medical treatment. Patients can determine in advance what kinds of life-sustaining interventions they would or would not want when incapacitated. However, pregnancy exclusion statutes can complicate this right. Um they modify or even nullify advanced directives when a when a patient is pregnant. So hence there's a tension between respecting individual autonomy and the state's interest in protecting potential fetal life. This often shifts decision-making power away from the patient's previously expressed wishes. So our research question was how do state abortion laws in states with total abortion bans, in states with no gestational limit on abortion, how does that correlate with the validity of advanced directives during pregnancy? Um the legal foundation for advanced directives and the right to refuse medical treatment is rooted in a series of landmark cases that collectively established patient autonomy as a constitutional and ethical priority. In 1976 the case In re Quinlan, there was a young woman in a persistent vegetative state whose family sought to remove her from a ventilator. The New Jersey Supreme Court um established the right in privacy including declining extraordinary life-sustaining treatment e- even via a surrogate decision maker. This was further strengthened in 1986 um in the court case Bouvia versus Superior Court, where a competent but severely disabled woman who was hospitalized against her wishes sought to refuse artificial nutrition. The court affirmed her right to do so, emphasizing that such refusal is not suicide but simply an acceptance of an underlying disease. In 1990, this was solidified at the federal level in Cruzan versus Director, Missouri Department of Health. A young woman was in a persistent vegetative state and was kept on artificial nutrition and hydration. The US Supreme Court held that competent individuals have a constitutionally protected right to refuse medical treatment while allowing states to require clear and convincing evidence of a patient's wishes. And finally in 1997 with the two cases Washington versus Glucksberg and Vacco v. Quill, those cases involved challenges to bans on physician-assisted suicide and it clarified the distinction between withdrawal of treatment and assisted suicide, reinforcing that while assisted suicide is not constitutionally protected, withdrawal of treatment remains a fundamental liberty interest. Together, these cases established a consistent legal doctrine prioritizing autonomy and end-of-life decision-making, one that becomes notably inconsistent when pregnancy exclusion laws are introduced. When pregnancy is introduced, um many of these established protections are not upheld. Pregnancy exclusion laws are when a present pregnant patient's previously expressed wishes um in advanced directives can be disregarded, even in cases where they were in a vegetative state like Quinlan. This selective application of autonomy in certain states with pregnancy exclusion laws highlights an inconsistency in how ethical and legal standards are applied. It raises questions as to whether the well-established right to end-of-life decision-making upheld in court cases across decades in US history, whether that extends to pregnant individuals as well. So, a little bit about the historical evolution of abortion law. The legal landscape of abortion in the US has significantly evolved over time. Um prior to 1973, this it was largely criminalized amongst most states. However, um with Roe v. Wade in 1973, it established a constitutional right to abortion grounded in the right to privacy. It created a trimester framework that limited the extent of state regulation. In 1992 with Planned Parenthood v. Casey, it affirmed this right by eliminating the trimester framework in favor of the state regulating based on pre- and post-viability. It also added on the undue burden standard, which allows states to impose restrictions so long as they do not create a substantial obstacle to access before fetal fetal viability. This federal protection was overturned in 2022 with Dobbs v. Jackson Women's Health Organization, which returned full regulatory authority to the states. In a post-Dobbs world as we know it, it's wildly divergent policies across states ranges from total abortion bans to um no gestational limits. So, this increasing fragmentation of reproductive law forms a critical backdrop for this study. It raises questions as to whether and how these policy environments influence other areas of medical decision-making, including the treatment of advance directives during pregnancy. So, the study that we conducted was a statutory analysis of 23 US states. We looked at advance directive laws in states with total abortion bans, which ended up being 13, and states with no gestational limits, which ended up being 10. And we developed a categorical typology based on whether the advance directive remains in effect and to what extent. So, this was the typology that we created. I'll go into a little bit of detail about each of them. So, in the automatic invalidation, that means a pregnant woman's advance directive was completely disregarded once the pregnancy was identified, meaning her previously stated wishes, such as refusal of life-sustaining treatment, are not honored. In viability-based enforcement, um that's whether the directive is followed depends on fetal viability. For example, a directive may be honored at 18 weeks, but overridden at 26 when the fetus is considered viable. In viability-based enforcement with maternal harm and pain exceptions, that still prioritizes fetal viability, but allows clinicians to withdraw treatment if continuing care would cause significant harm or suffering to the patient. And in contrast, some states provide an opportunity to specify wishes without default guidance. So that means that individuals can document pregnancy specific preferences, but the law does not dictate what happens if they do not. In explicit opt-out provisions, that goes a step further. It allows individuals to clearly state whether the directive should remain in effect during pregnancy, thereby preserving autonomy. However, the default is still that the pregnancy exclusion laws are in place unless the patient opts out. In states with statutory silence, the law does not address pregnancy at all. So this leaves decision makers decisions to clinicians and surrogates without clear legal direction. Finally, some states bar patient designated decision makers from ending life-sustaining treatment for pregnant patients. So that means that even if a chosen surrogate decision maker can't withdraw care if the patient has explicitly written that they'd want um their decision maker to do so. So this was the data that we collected. Um so on the left, that was states with no abortion bans or gestational limits. And on the right was states with total abortion bans. This was as of 2025 when we conducted the study. So as you can see, there are some categories that are only on one side versus the other, but there are also a decent amount of categories that are on both sides. Um so there was kind of no clear correlation um with having a total abortion ban and having, you know, everyone have automatic invalidation of an advance directive. Um and then there was one with an asterisk, Louisiana. That statute did not explicitly reference advance directives, but its language implies that life-sustaining treatment must be provided during pregnancy regardless of whether the patient has an advance directive in place or not. So I'll delve into a little bit of the key findings. So while it's tempting to frame reproductive policy in the US as a polarized landscape, split neatly between states that allow abortion and those that ban it, the legal treatment of advance directives during pregnancy reveals a far more complex and layered reality. This distribution underscores the fragmented and inconsistent nature of legal protections for pregnant individuals and end-of-life autonomy, and reveals that a state approach to advance directives during pregnancy doesn't necessarily correspond with its stance on abortion access. So, going into some of the specifics, um states with total abortion bans, so we can take um Alabama and Texas, for example, they followed more of a predictable pattern of both restricting reproductive choice and automatically invalidating advance directives during pregnancy. Um however, some diverge from this model, so such as Michigan, Alaska, and Minnesota. They did not oppose um gestational limits on abortion, but they still restricted end-of-life decision-making for pregnant patients through surrogate limitations or viability-based standards, and that sometimes required clear and convincing evidence of a patient's wishes. Conversely, states such as Oklahoma and Idaho, they combined highly restrictive abortion law with mechanisms that preserve some degree of patient autonomy in advance directives. So, that included opt-out provisions or fully patient-directed applicability. Mhm. And then also in Colorado and Oregon, um despite strong protections for abortion access, they remain silent on how pregnancy affects advance directives, so that leaves a lot of interpretation to clinicians or to courts. So, together these uh these examples illustrate that reproductive policy operates across multiple dimensions, including abortion, end-of-life care, and bodily >> [clears throat] >> autonomy, and then evolves unevenly across states. It results in a fragmented legal patchwork that complicates clinical decision-making and may ultimately undermine the consistent application of patient-centered care. The ethical challenges of medical decision-making for incapacitated pregnant patients has become increasingly complex in the in the context of evolving state-level reproductive restrictions, promoting consideration of pregnancy Sorry. Um promoting consideration of pregnancy-specific advance directives as a potential solution. As highlighted um by Joan Kraus um in her paper pregnancy advance directives, she proposed a distinct pregnancy advance directive that allows individuals to clearly document their values, goals of care, and treatment preferences in the event of incapacity during pregnancy. While this concept is important to voice, the effectiveness of such tools depends heavily on clinician engagement and patient education. Healthcare providers must proactively initiate discussions about advanced directives with reproductive age patients and revisit them during key life events, while also counseling patients on how state law may limit or even nullify their directives. As I've discussed, pregnancy advanced directive laws vary widely across states, and it's important that patients are informed about their specific state rights when creating their pregnancy advanced directive. Advanced directives are also not often made by younger patients, so it's important that clinicians initiate this type of conversation with all of their patients. Advanced directives are honored when you travel across states normally. However, an important question arises in the context of pregnancy. Will an advanced directive that's valid in one state be honored in another when the patient is pregnant? It creates significant ethical and practical challenges for patients who travel or relocate. Ultimately, a pregnancy-specific advanced directive combined with informed clinical guidance can offer a more ethically robust framework for navigating conflicts between maternal autonomy and state-imposed interests on fetal life. This paper has examined the complex and inconsistent ways that state law addresses the rights of pregnant individuals to specify life-sustaining treatment, um situating these statutes within the broader legal landscape shaped by abortion restrictions. However, key questions remain, such as the right of capacitated individuals, a blanket approach to pregnancy exclusion laws fails to account for cases in which a patient may retain full decision-making capacity, and can make informed choices about their care, including the acceptance of fetal risk. It also we don't talk about um if they don't have an advanced directive, I think that's another area for further research. Responsibility typically falls to surrogates, clinicians, or hospital ethics committees in those situations. Um we also only focus on situations where the patient is still living, intentionally excluding those where the patient is considered brain dead. Cases involving after-death decision-making have historically faced similar legal barriers as to those surrounding end-of-life decisions for pregnant living individuals. And finally, further research is warranted for cross-state enforceability of advanced directives. So, in conclusion, the implementation of pregnancy-specific advanced directives, combined with clear patient education on state laws governing end-of-life decision-making during pregnancy, it can help empower individuals to make more informed and autonomous choices about their care. Thank you so much. I'll take any questions you have. >> I think thank you so much for this. My first question was already addressed specifically on the the matter of patients who are brain dead. So, I'm I was interested to see that see that. My other question was about does your research some of the questions in this involve whether um whether cesareans will be sort of like compelled in circumstances where that's sort of like warrant where where where that might be that might be the only way to like to save the fetus but the but the mother is still is is is would is does not want that. And I'm I think specifically like the I'm thinking specifically of the Angie Carter case from from the '80s and '90s. But, I'm curious if your research has shed any light on that on that development question. >> Yeah, kind of what I've read is it seems like hospitals are a bit more weary about kind of going forward with an advanced directive if they're unsure about, you know, what state policy is. So, they'll normally lean towards the side of, you know, not really following the advanced directive to, you know, keep the patient on life support. And I think a lot of times they'll try to like keep the patient until viability so they're able to do that um cesarean. But, I think there a lot of hospitals can become afraid of, you know, the legal repercussions if they go through with following the advanced directive if it doesn't end up following the law. So, that is I think some more further research of, you know, when will they start doing those cesareans if they do kind of follow. That's a good question. Yeah. >> It's a It's comment to end the question. So, who wants to be pregnant if the state can take over your bodily sovereignty? Isn't this like now a decision for like the choice between sovereignty and carrying a fetus or baby? So, I guess my question for you is there any research on that on how people feel about their bodily sovereignty and autonomy in a state of state exercised control? >> I think that's a great question and unfortunately I do not know the answer, but I do think there's not a lot of people who understand the the policies behind advanced directives with pregnancy and it's something that's not often talked about between the clinician and the patient. And so, I think that lack of education about it maybe is influencing or if people knew more about it, that might influence whether or not they would want to become pregnant or have their pregnancy in a certain state. So, I definitely think there needs to be more education for people about this because of the way the state is able to take over such autonomy of the patient, especially eroding such an established right that you have of bodily autonomy that we, you know, established through all those cases that I discussed, something that can just be snatched away immediately when you become pregnant. It is definitely something that needs to be talked about more. All right. Thank you so much. >> Our next talk is titled Perceptions of Health Care Providers Provider Conflicts of Interest Across Socioeconomic and Educational Groups. Karyn Wicker is a second-year medical student at Lake Erie College of Osteopathic Medicine in Erie, Pennsylvania. His research interests include orthopedic surgery, clinical ethics, and health policy. And he has contributed to multiple research projects including first authored work. His current research examines physician conflicts of interest and transparency in healthcare. He has previously conducted research at the NIH, Cornell University, and the University of Buffalo as well as Kennesaw State University. >> Uh good afternoon everybody. Um thank you guys for coming. Um let me see how to work this. Okay. All right. So, um my project was on the perceptions of healthcare provider conflicts of interest um across socioeconomic and educational groups. Um so, um me and my partner Robert Tran were um we had the scholarship for the Winship program and uh we essentially were recruited to do uh clinical research um at Wild Cornell. And during that research time, we were recruited to do to doing um multiple community events. Some of them included Heart to Heart, which was a free screening for diabetes and cardiovascular disease mainly in minority popula- populations in the New York City area. Um and we also did contributed to the naloxone distribution and overdose pre- prevention and uh in similar areas across the New York City communities. And you'll see that these are events that uh that were important because we uh conducted our own question and developed a survey and uh conducted data analysis during the 6-week period of our research program. Um so, to start out, uh uh so what is a conflict of interest? Uh we determined that uh conflict of interest is a potential clash between professional and uh professional responsibilities and personal interests. Um and we found that most patients in the US uh depend on healthcare providers who have financial relationships with pharmaceutical companies. And we wanted to know why this matters. Uh you probably want to know why this matters. Uh even the smallest incentives can subconsciously um affect the healthcare provider prefer prescribing behaviors and raising ethical quality of care concerns for the patient. Um we conducted a QA QI study to assess the perceptions of various scenarios on the healthcare providers conflicts of interest uh with various uh pharmaceutical companies. Um and so for a little bit of background, uh we um before we conducted the study, we did a little bit of literature review and we found that uh the Sunshine Act uh was one of the acts that was passed that um was reporting the payments of pharmaceutical companies in the CMS and open um open payments database. And we also found another study um from Perry in 2015 that found that studies uh that found patients trust varied by uh payment types, stock, and travel and they were viewed negatively uh while consulting and samples were more acceptable. Um and to our knowledge, no prior research has been done to differ. Um no prior research has done whether the perceptions differed by socioeconomic status or educational level. Um so our study uh explores how socioeconomic and educational influences uh patients' perceptions on uh the providers uh potential financial conflict of interest. Uh and so for our objectives um we assessed uh how different socioeconomic and educational groups perceived different types of of payments such as financial relationships uh speaking fees uh trips resorts and um we identified um the strategies and we also wanted to identify strategies for transparent health care provider industry relationships that preserve the patient uh the patient trust across diverse populations. Uh and so for our methods uh Cornell was gracious enough to give us uh $20 gift cards that we incentivized the people that we were giving out the surveys to to fill out the surveys. It was pretty lengthy survey so um a lot of the people were happy to receive the $20 but um it was hard to to recruit a lot of people so we only recruited 66. Um and we had the survey include eight demographic questions three questions assessing the health care provider trust uh six on the Likert scale six Likert scale items assessing the agreement of hypothetical conflict of interest scenarios and then we had one open ended question at the end just to kind of see what the general vibe was for the people uh filling out the surveys. And so uh for our data analysis we did a uh a logistic regression model that examined the odds of agreeing and we um we separated the groups into strongly agree and agree and neutral to disagree and strongly disagree. And for each of the conflict of interest scenarios, we base it off of education and socioeconomic status. And so this is uh a part of the survey. This is like the first part. So we asked the people to fill this out. We did not assist them in reading or comprehension of the questions. Uh so this may or may not have had an impact in the data that we got, but I feel like the the questions for the first part were pretty straightforward. And for the second part, we gave these uh the people who were filling out the surveys a scenario. And so uh it says that the doctors have a relationship with the drug companies. These relationships can include payments, gifts, or other forms of payments. Uh in this section, you will read a few short examples of these scenarios. And for each one, you have to answer each one. Please tell us how much you agree or disagree that the scenario could lead to a doctor prescribing a drug that is not in the patient's best interest. And so we gave scenarios on the side. Uh but for this prompt here, it was a little it was a little tough because some of the people in the lower socioeconomic status and educational groups had a hard time of understanding what the question was really asking. And so this is the second part that they chose from uh strongly agree to strongly disagree. And this is the open-ended side of the question uh where you were asked uh imagine if you're selecting a new physician. One of one of the physicians that you're considering is Dr. Matt Wilson, uh whose office is near your home. Uh such part of your uh search process, you looked up Dr. Wilson was was receiving money that shows that he um was receiving money from the pharmaceutical companies. And so, you were given scenarios A and B and uh asked, "What do you think about uh Dr. Wilson, if he's more likely or less likely to prescribe you a drug that is not in your in the patient's best interest, and why?" And so, of the 66 people that we surveyed, this was the breakdown of the demographics. Uh as you can see, almost half of them were black or African-American. Um most of them were non-Hispanic or Latino. And most of them were of uh female race. Or female sex. Um and so, furthermore for the demographics, uh the average age was around 48.6, uh standard deviation about 18. And uh we measured that approximately 24% were immigrants. And of this, there were majority of of the people who were filling out the survey, around 72% had some college or less. 27% or a quarter or more had bachelor's or more. And income, uh around 65%, slightly over half, uh had an income of under 300% and around 35% had an income of over 300%. And this was determined by the federal poverty line. Um and so, for our results here, um for the first part of the question, uh whether whether the people felt like they completely trusted their physician or not. Uh we found that uh an overwhelming amount, 78.6% of the people who had some college or less, uh strongly agreed that they completely trust their physician. And people who had a bachelor's or more, around half of them did not completely trust their physician. Uh similar results were found in uh asking if uh the people filling out the surveys, if they completely trust their doctor's treatment decisions. And so, furthermore, um we assessed the percentage of people who believe that receiving drug samples affected their affect their provider's decision-making. We found that about half of the people with some college or less found that that was a potential conflict of interest. Whereas 65% of the people with bachelor's or more found that as a potential conflict of interest. Uh similarly was found with speaking fees. Um around 70% of people with bachelor's or more found that that was a potential conflict of interest. Um and so, we crunched some data and did some data analysis and we found that uh people who filled out the survey with some college or less were more likely or were less likely to think that receiving speaking fees was a potential conflict of interest uh with a p-value of 0.16. Um and we found that people who had an income of over 300% were more likely to perceive that receiving drug samples was a potential conflict of interest um with a p-value of around 0.2. Um although these numbers are not statistically significant, we do figure that um, with our small sample size and with potentially more more straightforward questions and with um, with a larger sample size and more diverse group, we do think we do feel like with these trends we may be able to um, lead in further research and maybe potentially get that statistical significance. Um, and so for conclusion, uh, we found that uh, trend suggests that educational level may influence the trust-related perceptions more than income. And we found that some scenarios show greater agreement than certain scenarios influence power provider trustworthiness amongst higher educational groups, but differ and they aren't statistically significant. Um, we also found that results are explanatory and highlight areas uh, for further study in the larger sample. And some some for some of our future directions, um, we found that we could have more opportunity to expand the research uh, to more diverse and representative populations. Um, like as you saw almost half of the population was of the black African-American race. Um, adding for a little bit more diversity there may have a potential um, different outcome for the surveys. Uh, we also found or we also thought that uh, examining additional conflicts of interest such as medical device endorsements, research fundings, or um, things of similar conflicts of interest, um, may have different uh, different patient perceptions. And we also found that or we also thought that uh, assessing the impact of conflict of interest disclosures uh, on patient decision-making um, could also have an impact. All right, and so our recommendation for Wild Cornell was that they should that we should standardize the conflict of interest disclosures to all to ensure all patients receive the same information. We We believe that the CTSC should uh the CTSC led patient education efforts should use more clear and accessible language to improve the understanding for provider conflict of interest across diverse populations and that the CTSC training programs should prepare staff to explain conflicts of interest in a neutral non-judgmental manner. And so here are our references. And for our acknowledgement our acknowledgements, we just want to thank the Winship program of VCU and um Bristol Myers Squibb's, Gilead, Amgen, and of course Wild Cornell Medical for giving us this opportunity. And I believe that's it. Thank you. >> Do you think uh disclosure of conflict of interest is enough? I mean, the the slides that you put up there, you know, indicated that there were some trust issues to start with, especially in certain populations. Um you know, if I'm in You have an interest in orthopedic surgery, right? If I'm a orthopedic surgeon and I'm a consultant for this implant company and I do knee implants and that's the implant I use, you know, is that disclosure on the website enough or does more need to be done? Does it need to be an in-person disclosure? Does it need to be a reaffirmation to the patient that I have a fiduciary duty to you and not to this company? What do you think is enough? >> Um I think that's a tough uh that's a tough situation there, but um if it was my personal opinion, I think the physician themselves should be clear and transparent to all of their patients. Um just to give them a full full understanding and being fully transparent to increase the trust of their of that patient. And um if the patient decides that he wants to go with a different provider because of the conflicts of interest, then that should be the autonomy of the patient and not uh of the autonomy of the physician in that scenario. >> Thank you so much.