Transforming Trust Factors
From Inception Through Breakdowns to Breakthroughs
“As leaders, as neighbors, as colleagues, it is time to turn to one another, to engage in the intentional search for human goodness. In our meetings and deliberations, we can reach out and invite in those we have excluded. We can recognize that no one person or leader has the answer, that we need everybody's creativity to find our way through this strange new world.”
- Margaret Wheatley. [Remembering Human Goodness, Shambala Sun, September 1999]
Trust is a two-way street. Each healthcare servant has the family trust and cooperation at stake. Lack of trust creates inconsistency in the delivery of care and influences patient family choices.
Episode one we will explore how medical ethics influences trust as well as govern patient and family rights; and to what extent does multicultural competency influence organizational approaches toward a more dynamic and inclusive culture. We will also seek to understand the underlying factors which erode trust and how to transform these dynamics at their inception and from breakdowns to breakthroughs.
Show Topics and Highlights
I take care of people, I have the luxury of taking care of people over time and having a longitudinal relationship with them. And I see trust is at the center and at the heart of, of what I do and my connection with patients. Without trust, we don't have a functioning robust therapeutic relationship without trust.
How do you know what's meaningful to a patient? You ask them.
How do you look at someone in your space and say, what's important to them? Well, one of the things that's that shows that you're important is that you have some people in the space that look like you, and that can understand you.
Trust is something you have to behave your way into.
And I and I think that that that's a part of the work around multicultural competency is being able to learn how to listen, learn how to understand.
And trust in what we do is absolutely everything. If we don't have it, if the system breaks down, because we are part of the healthcare industry, we are one small cog in that massive wheel of the nation's health care system. But this, our little wheelhouse is is judged even a little bit harsher. Because of the rarity, the complexity, the myths and misconceptions of organ donation.
We have come a long way. But there's still a long way to go.
There's a lot of things that go into the trust factor. So so one of the things I would say is basically expand your relationships, expand your relationships in the community, with trusted members of the community, and that those are relationships that you have prior to when you have to pick up the phone.
The teaching that I focus on clinical ethics, bioethics is a huge field and there's many subfields clinical ethics is one of them. There's research ethics, we've been talking about research ethics, a little bit with the Tuskegee and there's many other examples of terrible transgressions in the 20th century with research ethics, there's global ethics, food ethics, public health ethics, which has been in front and center during the pandemic. So lots of major subfields. I do most of my teaching in the area of clinical ethics because I'm teaching medical students and residents who are interacting with patients and family members.
If you had to pick one, innovation in the history of medicine that has been most effective, it's been the development of vaccines, and look at how we've all benefited from not having small polio or childhood diseases.
The donation and transplantation community right now is struggling with a ethical dilemma. There are transplant programs that are instituting a policy that patients who want to receive a transplant and be listed must have the Coronavirus vaccine.
The rate among vaccination among healthcare professionals across the country is extremely high. And that's because we believe in science, and we're doing it to protect ourselves and our family and our patients. I mean, I've considered a professional obligation to be vaccinated, so that I don't transmit it, you know, inadvertently to any of my patients, many of them are older, and more vulnerable from a health point of view.
Profound Conversations Executive Producers are the Muslim Life Planning Institute, a national community building organization whose mission is to establish pathways to lifelong learning and healthy communities at the local, national and global level. MLPN.life
The Profound Conversations podcast is produced by Erika Christie www.ErikaChristie.com
Full Transcript
Joia Jefferson Nuri
leaders, neighbors as colleagues, it is time to turn to one another, to engage in an international search for human goodness. In our meetings and deliberations, we can reach out and invite in those we have excluded. We can recognize that no one person or leader has the answer that we all need everyone's creativity to find our way through this strange new world. I'm Julia Jefferson Nuri, and that quote was written by Margaret Wheatley. She published a piece in Shambala sun, entitled remember the human goodness, it was published in September of 1999. It is a very fitting piece for us to start this profound conversation in this profound conversation, we welcome you today, and we hope you will join us for this hour and our coming shows. Today, today's topic is centered around trust, and ethics. We all know that we live in an age where trust is hard to find, and ethics are questioned on so many levels. But today we're going to look at it in specific areas. We're going to identify trust and ethics from leaders in the deep AI community in the organ transplant community. And at one of the most renowned hospitals in the world, Johns Hopkins. We're going to divide this program in first determining what is trust and what actually is ethics will then kind of move into that area of trust and ethics in organ donations, and then the COVID vaccine. I want to introduce you to our illustrious panel today. We are first being joined by Leslie Compagnone, Am I pronouncing your last name wrong?
Leslie Compagnone
Very close. Its Compagnone.
Joia Jefferson Nuri
I'm so sorry. Leslie is the Director of Community Affairs at the Washington regional transplant community. Next is Linda Howard. Linda is CEO of Alternative. Linda is a diversity Equity and Inclusion CEO. She also works on multicultural competencies, and she's a strategic advisor. Thank you Linda, for joining us today. Thank you. Listen. Finally, Dr. Joseph Carrese. He's a professor of medicine at the Johns Hopkins Hospital and is a professor at the Berman Institute for bioethics. Thank you all for being here today. I want to start out with Dr. Carrese. Dr. Carresem bioethics as part of your wheelhouse you do work at Johns Hopkins, which is respected around the world. When a patient comes into Johns Hopkins, what should he or she expect? In terms of trust?
Dr. Joseph Carrese
I think that's a really important question, I'll come at that from the perspective of what I do, and I'm a primary care doctor. So I take care of people, I have the luxury of taking care of people over time and having a longitudinal relationship with them. And I see trust is at the center and at the heart of, of what I do and my connection with patients. Without trust, we don't have a functioning robust therapeutic relationship without trust. Patients may not come to see me or if they do come to see me they may not feel comfortable sharing sensitive information that needs to be shared in order for you to make an accurate diagnosis and and give proper treatment. So it's really essential to the doctor patient relationship, I think all healthcare provider patient relationships, but as I see it as a primary care doctor, it's impossible to function without it. And I think the way ethics enters into that I, I think of ethics as having one way of looking at ethics. It's a huge field, but clinical ethics dealing with patients and family members, certainly starts with respect. Respecting patients as persons, respecting their dignity. And taking into account how they think about respect how they define respect what it means to them, and operationalizing respect in a way that takes them into account. So I think that having that in place helps people trust us if we don't respect them in a way that's meaningful to them, if we don't try to benefit them in a way that's meaningful to them, if we don't try to protect them from harm in a way that makes sense to them, then it's going to be hard for them to trust us. And as I said earlier, that's sort of a starting point and an essential part of the relationship. I could say more about that, but maybe I should stop there.
Joia Jefferson Nuri
I have a follow up question. And you said meaningful to them. I like that phrase. How would a doctor know what's meaningful in this trust relationship? what's meaningful to me? While I sit in your office? Yes. So
Dr. Joseph Carrese
I think, you know, the and the reason I say that is one of my formative experiences as an early physician was spending four years in the Public Health Service in the Indian Health Service on a Navajo Indian reservation and going to a community that I had no familiarity with, and obviously a completely different cultural perspective, traditional Navajo. individuals have a completely different worldview than I grew up with, and that I was taught in medical school. And I stumbled along for several years, not saying the right things doing the right thing. So I think the answer your question is, how do you? How do you know what's meaningful to a patient, you ask them, you start with not you don't make assumptions. And the starting point is you teach me let me learn from you. What makes sense to you what's important to you what you value, how you understand benefit, how you understand harm, how you understand respect. So I think that's the starting point listening.
Joia Jefferson Nuri
Thank you very much. Linda, I'm going to ask you the same question. In the work you do define the word trust. What is how does trust show up in your work?
Linda Howard
Okay, so I'm just, you know, I've worked in the healthcare industry for probably about 15 years now, the majority of that experience was on the compliance side working in health care compliance. Over the last few years, I've shifted to work more around multicultural competency in diversity, equity, and inclusion. And so just to kind of, you know, talk a little bit, you know, getting into that crease space. When you start talking about trust in the healthcare industry, you have to look at trust, and even defining trust from a from a cultural perspective, and looking at, you know, that trust relationship. And oftentimes, for a lot of, for a lot of patients, for a lot of individuals in the healthcare industry, when you don't see people that look like you, it becomes very difficult to trust. And so having that diversity, even in place, is a key element to trust. Because if if, you know, as I'm, you know, as we said that, you know, how do you look at someone in your space and say, what's important to them? Well, one of the things that's that shows that you're important is that you have some people in the space that look like you, and that can understand you. So, you know, one of the one of the things that I say oftentimes is that you cannot talk your way out of what you behaved your way into. Being in a trust relationship means that you have to actively gain that trust. It's not something that's just given. And in this country, we do have a history put even in the medical profession, of not having trust, that trust has been violated over the years, over decades, over centuries. And so so we trust, it has to be something that's actively work that it is not something that you can just define and say, Hey, you know, you should trust me because I say you trust you should trust me, but it is something that you actually have to behave your way into. So I think that we have a lot of work to do in the industry in order to gain trust.
Joia Jefferson Nuri
Yeah. One of the things that Dr. Currie said was that he went into a Navajo community. Obviously, he does not have a Navajo background, yet he gained the trust. If you're in a situation where you are not you, you're the you're the practitioner, you don't look like the people you're servicing. How do you gain that trust?
Linda Howard
And I and I think that that that's a part of the work around multicultural competency is being able to learn how to listen, learn how to understand, like not going in and saying, I want to help you from my worldview, but understanding what that what, what helped means to that person. What does health mean to that individual? What does it mean, in a in a cultural setting. And so when I talk about, you don't not having someone that looks like me, that doesn't mean that the individual practitioner has to look like you. But if I walk into john hopkins, and no doctor looks like me, and no nurse looks like me, then I am going to question whether or not this is an organization that I should trust. So so it's not necessarily that individual, but it's actually the organization. And I think individuals can learn to listen and understand and ask the questions and find out what can I do in order to help you and not look at it from their perspective, but look at it from that community's perspective.
Joia Jefferson Nuri
Thank you, Linda. Lastly, a same question to you. And if any of our audience members wants to know more about each one of our panelists today, you can go to our website, if you're on the line. Now, you can probably go to the chat when you go to our website and their bio, their full BIOS are there. Leslie, the same question to you in the area of organ donation? You you, you are the Community Affairs Director of the Washington regional transplant community, and trust in transplants has been an issue for millions of years. Like, what does it mean to you?
Leslie Compagnone
And trust in what we do is absolutely everything. If we don't have it, if the system breaks down, because we are part of the healthcare industry, yeah, that's Linda and Dr. Crease were talking about, we are one small cog in that massive wheel of the nation's health care system. But this, our little wheelhouse is is judged even a little bit harsher. Because of the rarity, the complexity, the myths and misconceptions of organ donation. And there are so many to make that one miracle happen. There's so many people involved. And we just have to kind of throw our blind faith and trust into the hospital system that we're working with the families that are in the worst moment of their life. What Why should these families trust us? Right? What Why should these families trusted in the absolute worst moment of their life? We're going to come in and we want something from them. Right? That is often how it's perceived. You know, it's, it's, oh, there's the organ donor people, you know, I knew that they were just going to let my husband died because they wanted organs, that type of thing, you know, or there's a bad car accident and the EMT you know, he's not going to work to save my life because they want me organs. So we're starting there with a lot of perceptions. And I loved what Linda said is you have to behave your way into trust. And that's what we do a lot in organ procurement is we have to listen we have to meet people where they're at we can't come at it from our worldview and just pretend to understand how everybody feels in this situation. If those families that we are working with don't trust us, we just aren't going to we are going to go anywhere we just are not going to go anywhere because you know it is you are you are dealing with the worst day of their life all the emotion nor complexities that come with that. And then on top of that they were coming in ask them for something we're asking them to have some somebody else live, your loved one died, but but someone else can live. How do you turn that around? How do you make them see the benefit of that at the worst time?
Joia Jefferson Nuri
Yeah, yeah, I can. I can imagine how that is a horrifying thing. And that's and that is absolutely. At the core of trust. And I do like what Linda said, you have to behave yourself. into that trust Dr. creasy went to live with Native Americans, you have to behave himself into that trust, you couldn't come say yes, but I'm the great doctor. And you must do it this way it was listening. And I guess listening is at the core of any relationship, especially when lives are on the line. I want to move us into our next segment, organ donation. And I have a question for you, Leslie, to kick this off that stereotype, that stereotypical answer around African American communities and I got all the time, even when I went to be an organ donor, you know, it's on my driver's license, you know, I'm an organ donor. And I had tons of people say to me, oh, you know, they're gonna let you die in the car accident, or, you know, you're going to go in the hospital, and somebody needs your eyes. And I thought, really, if the rest of me doesn't work, I actually don't want to be plugged in. That's my personal choice. And I've made that clear with my family. But that is something that is prominent, and it's, you look at the Tuskegee experiment, you will get a history of medical abuse around African Americans, why is this? Why should this generation feel any differently?
Leslie Compagnone
Well, the first thing is, is those immediate feelings and reactions are based in reality, some really bad stuff happened. And we have to understand that. And I'll just be frank, as a, as a white woman, I need to educate myself on that, I have to understand that I have to understand where, you know, we Linda was talking about meeting people where they're at and understanding that background, you know, there's there's Tuskegee always comes up. There's Henrietta Lacks on the research side, you know, with a lot of times will ask, if the organs aren't viable for transplantation, on their research projects that can be you know, we can a diabetic pancreas can go for research for diabetes, and hopefully one day find a cure for diabetes. But are you going to tell a grieving black family? We're going to take this for research, right? What is what does research mean to them. So it is establishing that context of listening and understanding and then trying to turn that into the benefit for society as a whole in organ donation, and it is a very tricky thing to do when there is so much grief, and anger, and hesitancy and distrust. We have come a long way. But there's still a long way to go. And very much what Linda said, When our clinical recovery coordinators are working on a case with a patient who has passed and their family. We're going to try and match those families up demographically, age wise. You know, if we need Spanish speakers, we will make sure to have someone who speaks Spanish, we do try and match that up. Because it's true, it does. Some of our African American families are going to want to speak to an African American coordinator. That's just how it is. And we have to understand that and that is part of the trust. If I want to talk to me, we'll find somebody who you can talk to who you do trust.
Joia Jefferson Nuri
Leslie, I believe also in this is ethics. Tuskegee experiment happened because of the lack of ethics. And so, Linda, if you were going to look at this and talk to Leslie about the best ways for the you know, the dei of it all around the ethics of transplant, what would be the language what how would you convince this generation was the long history? I mean, everybody feels not just African Americans and a lot of people of color feel the exact same way. Linda, what would be your response to that?
Linda Howard
So just in case because I know we're using the acronym, D, just in case some people don't know what an inclusion is. Okay. So from I think when we start looking at when we start looking at ethics, we have it's it's kind of multi layered. Because ethics can also be tied to religion as well. So if we talk about and this is you know, and Leslie You know, we've had some conference Around this with your work with Muslim life planning Institute, you know, so it's not just African Americans, but sometimes people have religious objections. And those religious objections are based on their ethics. And so what they're understanding in terms of what those ethical guidelines are, so so so some of that might be having the right resources available. And that may be, you know, making sure that when it comes to ethics questions that the organ procure procurement and donation community, has those resources, is there a trusted member of the community that you can reach out to to talk to the family? Is there an email that you can reach out to the talk to the family to be able to give them, give them that guidance? If there's issues and you start talking about African American community? And what and there's members of the African American community sound? No, I don't trust this, is there a resource and that might not be your coordinators, it may be some other individuals that that has that trust relationship with the community because the trust doesn't just come based on melanin. She's so the, there's a lot of things that go into the trust factor. So so one of the things I would say is basically expand your relationships, expand your relationships in the community, with trusted members of the community, and that those are relationships that you have prior to when you have to pick up the phone. And that way you can begin to understand, you know, what are some of those concerns? And how do we now begin to address those concerns? What, what resources do we need? what people do we need? What, what documents do we need? You know, what is it that we need in order to be able to address these concerns? Because Julia, you're right, it's not just African American community is its communities of colors, eras, people who are going to object, you know, from from a religious standpoint, and how do you begin to address these and I think that is basically building your relationships, building your partnership, expanding your team?
Leslie Compagnone
Yeah. And, and that is absolutely correct. And you think about building that infrastructure? Because you need to have that infrastructure there at that time, because organ donor things happen very quickly, with organ donation, right. You know, Hollywood and TV has not done service at all to our industry, they, the they perpetuate so many of the stereotypes. And it's been, it's been a really big problem. Hollywood, Grey's Anatomy has just been the worst for the sort of communicating what organ donation is, but it does, but the part that they do get right is things do happen very quickly. So we can't build that foundation in that infrastructure in that community in real time, right there with the family, it's our job to build that infrastructure, reach out to those partners have that trusted voice available and on the ready for when it's time to talk to the family. We can't build it right then and there. You know, we have to have that first because things move so quickly. There are people on the waiting list that have days to live, right. So it's making sure that that is done before and that's that's how we service and show respect to our families that we have these resources. We have built this for you. We're here for you.
Joia Jefferson Nuri
Thank you very much. Both of you, Dr. Crease up teach at the Berman Institute of bioethics at Johns Hopkins, can you tell me a little bit what ethics would be means to you as a doctor and at Johns Hopkins and how it's taught?
Dr. Joseph Carrese
Sure, so I mean, the the teaching that I focus on his, his clinical ethics, I mean, bioethics is a huge field and there's many subfields clinical ethics is one of them. There's research ethics, we've been talking about research ethics, a little bit with the Tuskegee and there's many other examples of terrible transgressions in the 20th century with research ethics, there's global ethics, food ethics, public health ethics, which has been in front and center during the pandemic. So lots of major subfields. I do most of my teaching in the area of clinical ethics because I'm teaching medical students and residents who are interacting with patients and family members. I think one of the major points we try to make when teaching is the importance of having a sense of the moral and ethical dimension of the health. care, professional patient relationships, whether you're a doctor, a nurse, or a social worker, that it's an essential part of every interaction, this isn't something that you once in a while have to think about when there's a crisis or a conflict or dilemma. It's a part of every single interaction, every interaction involves responsibilities and obligations I have to my patients. It involves my values and their values. And that's all in the mix every single time. So it's not, it's not a side issue. It's a core central part of every interaction, every relationship. And that's the starting point for our teaching. And then, of course, we get into more detail about some of the things I mentioned earlier. It's the importance of respecting people and respecting their dignity, and how do we think about that in a diverse society? The importance of attending to people's benefit and preventing, protecting them from harm? And how do we think about those issues in a diverse society, and increasingly, the importance of justice and fairness, and we've certainly been reminded, during the pandemic of how segments of the population have been disproportionately affected by the pandemic, because of historical and structural injustice. That's a pre predated the pandemic but the pandemic re has reminded us. Certainly one of the hardest hit communities early on was the Navajo reservation, we saw scenes coming out of gout in New Mexico, all of them being completely overwhelmed, but Latino community, the African American community, communities that have been hit hardest. And that certainly requires us to think about justice and fairness and how to address that in an ongoing way. Not just Korea.
Joia Jefferson Nuri
I just have one more question for Chris, if you don't mind. That's great. Currys. Johns Hopkins, has built a reputation for being a very fine hospital, very fine research place teaching hospital. But Johns Hopkins Hospital sits in one of the most underserved communities in Baltimore. And I'm wondering what the hospitals feels its responsibility is to the overall community, not just the ones who lie in your emergency rooms.
Dr. Joseph Carrese
Yeah, so I mean, I'm actually physically based at the Johns Hopkins Bayview Medical Center and do a lot of teaching on both campuses. But I think both the Johns Hopkins Hospital and the Johns Hopkins Bayview Medical Center feel very strongly that they absolutely have a commitment to the communities and has to do a better job than they've done historically and addressing community needs. We have a program at Johns Hopkins Bayview called medicine for the greater good. And I think one of our the leader of that Dr. Panic is scalli, it's Otto's has been a presenter in this the life planning Institute's programs in the past, but that's an explicit effort to reach out to the community and, and work with the community and listen to the community to to address their, their needs. And I think, you know, similarly, the Johns Hopkins Hospital has made efforts in that direction as well. One of my colleagues, Lisa Cooper, Patrick leads an effort on addressing inequity and disparity and, and health of a number of the faculty members who work in general for medicine, do community based research, so incorporating community members into their work. And so I think this gets back to something that Miss Howard said earlier about institutional trust. So I mean, I can have a relationship with my patients, and I may have behaved in a way over time to earn their trust. But if I'm not there, when they organ needs to be donated, they need to be trusting more than just one or two people in the in the institution, they need to have trust at the institutional level. And so I think this is a crucial issue. And how do you build that over time I, one of my roles is chairing the ethics committee of Bayview and we had an opportunity a few years ago to work in the direction of having institution get behind an effort to provide immigrant communities are at risk for detention and deportation information about their due process rights. And I think by taking that effort and providing that information, it was a tad concrete tangible evidence of the institution having the community's back and trying to build trust with the community at a moment of what could be a major crisis for those families.
Joia Jefferson Nuri
Thank you very much, Linda. I think you were chiming in for a moment there.
Linda Howard
Yeah. Um, I also want to say you don't to Leslie and kind of building on without the Currys also said, is that, you know, with that trust, it's also not just at that point of when you're approaching individuales in terms of about the donation of organs, I recently did a presentation around bias and in technology. And one of the things that I came across was some of the bias that's, that's used by, in a technology that may be used by physicians to even determine who, who was who should be on the list. So, so some of that work has to start beforehand, because I believe some of the some of the hesitancy as well is not just, you know, you just want my organs, but it's also you just want my organs to give it to people that don't look like me. So, so we so also whether, you know, is there a trust that there is fairness and in ethics involved in the whole selection process? So it's not just the is there that trust at an institutional level? But it's also is it that trust at an industry level? Right. And so so I think we have to look at the the whole industry and I just, you know, Dr. Crease I loved, um, you know, that that approach in terms of supporting them with respect to deportation, because sometimes that trust is not necessarily tied to, to the medical issue, but but it's, are you somebody that just has my back? You know, you have my best interests at heart. So, so, yeah, kudos on that program, because I think that that's excellent. Yeah,
Joia Jefferson Nuri
we're going to move on to our next segment. And thank you, everyone, for that contribution in our next segment is about the vaccine. There has been, as we all know, a trust an ethics question around this vaccine. Around the pandemic, there are people who believe that it was man made and put into the society on purpose, there are people who believe that you may remember in the beginning, because the reported numbers were low around African Americans that African Americans were immune to it, and then there was African Americans were targeted, and then all people were targeted. And then we come with a vaccine nearly a year ago, and now the debate is should you get this, you do not get it, if you don't get it, you don't get your job, keep can't keep your job. You know, if you do get it, you're not protected. So around trust and ethics on this vaccine. I'm going to start again, I'm gonna start with Linda, above the diversity, inclusion, and Diversity, Equity and Inclusion around the vaccine trust and ethics. Can you respond to that?
Linda Howard
Um, yeah, I can respond to what the challenge is responding to it. Finding it as a whole, that's a whole nother session. Um, yeah, but I think that there are some serious like, like, if we just talked about the issue around people's jobs being contingent upon them taking the vaccine, I think, and I've and I've had this conversation with a few of my clients around, you know, when you approach that you have to approach it from, from a diversity, equity and inclusion perspective, and a multicultural competency perspective, because it's a lot of organizations are looking at this as kind of a one size fit all. I was just on the phone with a client this morning, and we got on, we got on a topic around vaccines. And this happens to be someone of African descent. And she said, I'm glad my organization has not required me to take the vaccine yet she says, I'm not taking it not because I don't want to take it, she said because I have some health conditions, which doesn't allow me to take it. And then she talked about that she's lost five family members to COVID. And none of them were interested in taking having the vaccine because of trust issues. And so, you know, again, you can't you can't mandate trust. So you can mandate that you can take the vaccine, but you still can't mandate the trust and I think that that that some of the some of the organization's approaches are eroding the trust even further because it's it's they're not taking in consideration. True fares that that as as Leslie said, you know, it's based on something you know, These are not these are not fears and trust issues that's being pulled out of the air is based on something. And and there may be people who have religious objections, there may be people who who have health reasons. And so not taking all of that in consideration is I think is problematic. And I know that a lot of that we're in a place where there's just a lot of fear. And a lot of the a lot of the responses are based on fear, and they're not the least intrusive approach to achieve the goal that's being sore.
Joia Jefferson Nuri
And I think some of the fear is on both sides, their fear, their fear, for those people have it associating have taken the vaccine associated with people who haven't. And people haven't had the sort of fears that she just laid out. And then there's conspiracy, and there's political and if you support this politician, then you don't take at this politician that you do take it, it gets really complicated. But Dr. Currys, I want to turn to you for a moment. Because on a personal level, but people who I know don't want to take it, because it's not actually a vaccine, because it doesn't have a live virus, and for your patients, and then you are working in the work you do. How do you address that concern that this is a manmade, something that is being injected, and people are saying it's changing your genetics, and there's a lot of information out there like to hear your response.
Dr. Joseph Carrese
Yeah, I mean, I think it's a huge challenge, the access to people have the internet and all sorts of information, a lot of which is completely inaccurate, and, you know, instilling people with fear and and, you know, how do we overcome that in the context of a starting point where people don't trust the government, they don't trust their institutions, they don't trust the experts. They don't. They're skeptical about science. I mean, that's all of those things need to be in place for this to work. And for us to have a sort of a, an effective public health approach to the pandemic, which is called 700,000 Americans at this point. So it's a huge challenge. I mean, there there are, there are, there are facts. And there are misinformation about the vaccine. I mean, the technology is actually not that new. It's the first one of the first major times it's been utilized to create a vaccine, but the technical technology has been worked on, through NIH funded research for, you know, many, many years, if not decades, at this point. And you know, this vaccine works like a lot of other vaccines that people don't object to and take all the time. And one of the more senior physicians I know, at Johns Hopkins said, If you had to pick one, innovation in the history of medicine that has been most effective, it's been the development of vaccines, and look at how we've all benefited from not having small polio or childhood diseases. So I think overcoming all of that is a huge challenge. I know that I can say, you know, at the individual physician level, I'm available to talk to my patients and listen to what their questions are, and hopefully address their fears. And you know, and in the context of that trusting relationship, I don't think there's any person in my clinical practice who's come to me with questions and skepticism about vaccine vaccination, who hasn't eventually got it based on that conversation and my recommendation, genuine belief that it's in their best interest to do it, but you know, I'm one person, and this is a much bigger problem than that, and it gets back to trust at larger levels than individual people. But I think part of the solution is having a, you know, a relationship with a healthcare professional that somebody you trust. That's certainly one place to start.
Joia Jefferson Nuri
I think some of this is ethics to people. This is a question for everyone is ethics. Also there are people who believe that taking the injection from the vaccine, somehow, ethically, we're going to pay for it at some later time. ethically, I guess primarily Linda and Dr. Currys but Leslie, please chime in ethically. How does medicine those who serve people in the health community, convince people that ethically you're not out to get us?
Dr. Joseph Carrese
clarify I'm not sure I completely follow who's not out to get to the buy
Joia Jefferson Nuri
medicine, that medicine the government or whoever the FDA has not created this vaccine and not create a COVID anti vaccine but primarily the vaccine To come get us later that this was some injection that later on, we're going to have some level of mutation. But ethically, I guess this is my question. ethically, you are here to protect us. How would you? How do you address that? People are saying your ethics are in place, and then fearful? Well,
Linda Howard
um, I think it's not just about you out to get us later. I think there also is some concern is how have you done the work to ensure.
Joia Jefferson Nuri
Or it cam out too fast?
Linda Howard
Oh, yeah, maybe it may be. And sometimes it's not too fast. I mean, because we just look at the medical profession. There are a lot of drugs that are FDA approved that later that we find that they have serious side effects, which is why you see all those commercials to say, Did you take this drug between that time and that time, and now you're experiencing this? Yeah. 100 lawyers, you know, so, so I mean, I think that, so, so yeah, so people, some people have concerns about whether or not this is going to be something that we will see side effects from down the line. One of the questions that I have, and this is, you know, from a, from a public health perspective, that is, there's a lot of conversation about, you can go get the vaccine for free. But there's no conversation about health care coverage is should you experience any complications from the vaccine. So there's the vaccine is free. But if you suffer any complications, there, I don't think that there is an insurance that covers complications connected with the vaccine, because sometimes those complications might be two years down the line. So there's also so you have whole communities that become vulnerable. If they're uninsured, or underinsured, and then there are some some complications. So it's not just your attentionally out to get us, but are you going to look out for shit, we have a cookie, and that could only be that can only be 2% of the population that experienced a complication. But if you're that 2% it's devastating.
Leslie Compagnone
We're having if I can chime in. Yeah. So yeah. The donation and transplantation community right now is struggling with a ethical dilemma. Their transplant program, so just for the audience, to be aware, I work for an organ procurement organization, which is a separate nonprofit entity separate from the hospital that works with the hospital to facilitate the donation process when someone has died. The other side, there are transplant centers, those are the folks that list their patients. Okay, so if I have chronic kidney disease, I'm on dialysis, and I'm listed for a kidney, I'm working with my transplant team, right? So these are also the teams that that list their patients, and there are programs across the country now that are instituting a policy that patients who want to receive a transplant and be listed must have the Coronavirus vaccine, where they will they will be taken off of the list. So that is a current real time situation that has unexpectedly sort of popped up and talk about ethics. You know, there are there are boards that discuss these things and there are boards that decide who is listed based on a number of factors. But that is getting a lot of press it's getting the people are starting to talk about it and saying you know, if I'm not vaccinated, then I'm going to be taken off the list. There are very valid reasons for that decision. But it is a interesting thing that has reared its head to discuss ethically.
Joia Jefferson Nuri
Dr. Carrese? what is HIPAA?
Dr. Joseph Carrese
May I answered the vaccine question first?
Joia Jefferson Nuri
Yes, yes, I'm sorry. Yes, please answer
Dr. Joseph Carrese
HIPPAA is largely about privacy. But I'd like to-
Joia Jefferson Nuri
Oh, it's about privacy. That's all I needed. Yeah,
Dr. Joseph Carrese
I think you know, as time passes, there is more and more data every day to answer the questions and the concerns about the vaccine. I mean, this is largely as we're all seeing now, a disease of people who haven't been vaccinated. There's almost nobody in the hospitals now in the intensive care units, intubated and dying, who have been vaccinated. There's a rare breakthrough case, but the vaccine is incredibly effective. I mean, it's out outperformed all expectations. And that, you know, you don't have to trust anybody about that you can look at the data on the Johns Hopkins website that shows who's who's hospitalized now and who's dying. It's if people have not been vaccinated, vaccinated, and I think in terms of the safety of the vaccine, if, again, incredibly safe, there's rare side effects. But, you know, the vast, you know, it's one case out of a million or something like that, whereas the chance of dying from COVID is much, much higher. So the risk benefit trade off there totally is in the direction of getting vaccinated. If it was an inside thing where we're doing something with the vaccine, and you'll pay for it later. Why would 90% of the staff at Johns Hopkins get vaccinated, I mean, the, the rate among vaccination among healthcare professionals across the country is extremely high. And that's because we believe in science, and we're doing it to protect ourselves and our family and our patients. I mean, I've considered a professional obligation to be vaccinated, so that I don't transmit it, you know, inadvertently to any of my patients, many of them are older, and more vulnerable from a health point of view. So I think, you know, there's, there's a lot of I understand noise out there and a lot of misinformation. But I think if you just look at the data, and the and the, you know, my patients early on very early on, when they were skeptical, one of the things I would say to them, well I I'll be I'm you're going to guinea pig, I got vaccinated, let's see what happens to me, and we'll talk about it in a couple of months.
Linda Howard
Let me just say also, too, because I've heard a lot of the concerns. And some of the concerns also is, you know, how much you know, because you can have a different impact from given your genetic makeup. So what effect the vaccine might have on you doctor Currys may have a different effect on me, if I would not submit significantly represented in the trials for one. So I think that that some of the, some of the concern and you know, in doing di work, you you work with data. And when you look at average numbers, sometimes it can look really good until you start breaking down, breaking it down and saying, what about the subgroups? How did the subgroups get impacted? And I don't know the answer to that. But I don't think a lot of that information is being communicated. And and then, the other thing is that, because this has not, we don't have long term studies. So there may not be any immediate side effects. And so you have people who are concerned about long term side effects, and no one has the data on that, because it hasn't been around long enough. Totally, totally, we don't know the fact five years down the line, we just know, they got a shot. Right now, we didn't see any side effects. And the numbers are showing that you're better off if you haven't, then if you're not, if you don't.
Dr. Joseph Carrese
I would agree, and we and we're all in that same boat, but the other part of that boat, if that's not a, that's not a consideration, isolation, the other thing you have to consider along with that is people are dying from the infection that the vaccine is intended to protect you against. And again, it's doing a tremendous job of preventing those hospitalizations and deaths, we can just see it every hospital that's filled with patients right now. It's almost nobody's been vaccinated. So I agree with you that that's one of the challenges in clinical medicine, every aspect of clinical medicine. And this is also the case, we have to make decisions sometimes in the face of uncertainty. We don't have a crystal ball, we don't know. But you know, the the FDA has a very rigorous process for emergency use authorization, all of the vaccines pass that and now, you know, they're getting to full authorization and booster shots. And you know that those processes are in place for a reason. And, you know, so far the vaccines have been passing all of those hurdles.
Joia Jefferson Nuri
Right. Well, we have a couple of questions from the audience and let me get to those right now. Sharon Abdulla says, Good afternoon. Can Can the ability to emphasize empathize with others being learned? Or is it innate?
Dr. Joseph Carrese
Oh, I think so. I think that's a great question. And I think it helps I would say both and I would say in the teaching we do around ethics and virtues and empathy and, you know, listening, I think you're if you're a nursing student, or a medical student, or a social worker, and you've got that innately, you're further ahead. But we also believe they these some of these things are skills that can be taught both in terms of content and practicing. So when we're working for example, with Some residents on on Breaking Bad news like disclosing a diagnosis, a new diagnosis of cancer, there are things that you can say that are and sound more empathic, and things that you can say that don't come across that way to patients. And so we spend time trying to teach that and practice that working with standardized patients. So great if you've got an innately and that's probably the best way to have it, but we will also work on trying to teach you how to do a better job of it. But But I would say, hey, either way, really wanting to be empathic and trying to be empathic and having that be, at the core of your being, can be sniffed out by patients, I think, you know, you acting acting empathic doesn't really work.
Leslie Compagnone
That's why I think it's a neat, I, they can smell that the BS meter, sometimes I think it's very much funny. Yeah.
Linda Howard
But I think is also um, you know, if you're talking about it in the context of like healthcare and in institutions organizations, I think it's also important for those organizations to have the policies in place to protocols in place to training in place, because sometimes, even when it's not there, and yeah, it's acting is better than not acting. So it's the same thing. Like I say, you can't, you can't legislate racism out of people. But you can stop them from behaving as racist through your policies in an organization. And so I think that there are some things that I don't know whether you can you can you can teach it or not, but I think you can put protocols in place to allow for people to behave in a more empathetic way.
Joia Jefferson Nuri
That leads us to the next question we have, which has been a final question, because unfortunately, we're getting short on time. The question is, is there room for a patient Bill of Rights, which would include the right of respect, privacy, patience, truthfulness, and humility?
Dr. Joseph Carrese
Well, we have a patient Bill of Rights and Responsibilities of both the Johns Hopkins Hospital and the Johns Hopkins Bayview Medical Center. And it includes most of the things that were just mentioned, it also includes one of the reasons I'm familiar with it recently, because we've encountered a problem, you know, in the last few years because of national rhetoric, where some patients are being prejudiced and bigoted towards their physicians of of female or color or diverse physician population in the Johns Hopkins health system. And so patients are attacking providers. And one of the things we point out to patients is that in the patient's bill of rights and responsibilities, we expect patients to treat staff with respect and dignity and civility. But it's a two way street, we absolutely have a policy for both providers and patients, that they're both entitled to respect and civility and dignity and being treated. Everybody treats everybody that way.
Joia Jefferson Nuri
Right, right. Anyone else wants to chime in? How would that work? Linda?
Linda Howard
Yeah, I think that there's definitely room for the most in like john hopkins, I think most most hospitals do have it, I think it might be worth like a part of what when I'm looking at like doing kind of an assessment of where you are from Diversity, Equity and Inclusion perspective, a lot of it is actually looking at those policies and those practices with that lens on. So so I think looking at that patient bill, right? It'd be worth looking at it and having insane whether or not it is culture multiculturally competent. You know, who is at the table drafting that patient Bill of Rights, and what was being considered because, because oftentimes when you look at issues like trust, and empathy and respect, what does that mean? And what does that mean from a cultural? What does that mean from a cultural perspective? So, so I think a lot of organizations I think that there's even though they have one, there's probably a lot of opportunities for improvement there.
Joia Jefferson Nuri
Leslie, do you want to chime in on that for just a moment? Just a few words.
Leslie Compagnone
Um, I think do we give our families the donor families that we work with the right to say no, you know, we are not here to force to push to guilt. We feel bad. We just hope for an informed decision. And you have a right to say, No, no, we want people to know that. Yeah.
Joia Jefferson Nuri
Unfortunately, the hour has passed. And I want to thank each and every one of you not just for being on our program today. But for the work that you do serving our community. I think each and every one of you is so important, the disciplines you're in, are so important for overall health in our community. And it's really nice to have a same conversation about all the things we talked about today. So I thank you each and every one of you for doing this. I think everyone who is watching, especially those audience members who sent in questions, I'm sorry, I didn't get to all of them. But the conversation was going so well. I missed some of the questions. So please forgive me it was my head, not my heart. So I want to thank our producers, and everyone pulled this show together for the honor of being here. Peace and Blessings to you all.
