Hello. I'm Jim Wagner, and it is my pleasure to be serving Emory as its president. As a university community, Emory enjoys many privileges. And as privileged people, we also bear the burden of responsibility. For that reason, we were honored to be able to respond affirmatively last summer to request the care for health workers infected with Ebola virus. There are both practical consideration and reasons of ethical principle that led us to care for these patients. Practically speaking, Emory's proximity to the U.S. Centers for Disease Control and Prevention prompted us, actually some years ago, to develop special facilities. And teams of physicians, and nurses, and staff, who drilled over and over for just such an extraordinary task. And where researchers are at the fore of our knowledge about infectious disease, about vaccines, the immune system and antiviral treatments. So in terms of treatment itself, we had long been prepared and able to care for patients with the most infectious kinds of diseases in our serious communicable disease unit. Now we could have chosen not to assume the responsibility for these patients. But our mission of creating, preserving, teaching and applying knowledge in the service of humanity suggested that we needed to step up and do so courageously. Of course, we needed to exercise appropriate caution for caring for these patients and for the safety of our community. But we also needed to live up to the belief that privilege calls for the response of service. As an academic community, we also have the obligation to listen to public concerns, address confusion and fear with education, and open ourselves to new knowledge. Not only our healthcare teams but also our communication teams were hard at work for days on end helping to dispel rumors, make sure that facts were clear. And educate the public about the treatment and course of patients afflicted by this deadly disease. We earned the gratitude of the patients for our care of them but we also demonstrated the knowledge and the power of knowledge that is inherent in research universities. One thing we've seen clearly demonstrated by the Ebola epidemic in Western Africa is that public health and public health ethics are not merely local but they are global. Public health preparedness requires ethics preparedness and a proactive response to public health eh, epidemics. For six years now, I have had the honor of serving as Vice Chair of President Obama's Presidential Commission for the Study of Bioethical Issues. And in the wake of the crisis in Western Africa, that commission turned its attention to address the Ebola issue. In February, the commission released its brief report, which you can find in its entirety on the commission's website. But the report underscores that American's have both a prudential and moral responsibility for global response to public health emergencies regardless of where they, where they happen in the world. In seven recommendations, that report identifies ways to strengthen the capacity of the World Health Organization. Suggests empowering a single U.S. health official to be accountable for U.S. public health response, and points to ways for strengthening and deploying the U.S. public health service. The report also calls for integration of expertise in public health ethics, into the decision-making process. Equally important, governments and public health organizations must be prepared to communicate clearly their decision-making as they respond to public health emergencies. In this section of the course, two Emory faculty members will discuss these and other important ethical issues related to the Ebola epidemic. Dr. Paul Wolpe is director of the Emory Center for Ethics and a renowned bioethicist. And Dr. Dabney Evans is co-instructor of this course and an assistant professor in the Department of Global Health in the Rollins School of Public Health here at Emory. Thank you for enrolling and enjoy this section of the course. >> In today's session, we're focusing on managing potential and diagnosed Ebola patients. This section of the session will focus on ethical issues related to Ebola. Joining us now is Dr. Paul Root Wolpe. The Asa Griggs, Candler Professor of Bioethics and the Director of the Emory University Center for Ethics. Thanks for joining us Paul. >> My pleasure. >> We've already discussed the differences between medicine and public health. So I'd like to begin by asking you to give us an overview of the differences between biomedical ethics and public health ethics. >> Well biomedical ethics is an ancient system going back to Hippocrates and probably even before. Public health is a more modern version of biomedical ethics. When we began to realize that the ethical issues of, of handling groups of people were different. So in the doctor patient relationship, which is biomedical ethics, the responsibility of the physician is to the patient. No other responsibilities are nearly as important. So you have a fiduciary responsibility to your patient. You need to do what's in his or her best interest. There are no other stakeholders that you are ethically bound to respond to. In public health ethics, you respond to a population. So there are multiple stakeholders and multiple needs. And, ethnically, your responsibility is to maintain the health of the population, which may mean at times, sacrificing the health of an individual or the welfare of an individual. So, for example, through allocating resources, some people will get more than others. Or through quarantine where you have to take an individual who puts the rest of the population at risk and isolate them from the rest of the population. Also, public health tends to focus far more on prevention. Sure, public health does intervene in cases like Ebola where there are epidemics. But the primary activity of public health is to try to spread programs that help keep the population from getting sick. So it's very preventative, while most of medicine tends to be treatment-oriented rather than preventative. Medicine is more oriented towards the private good. The good of the individual, while public health is more eh, oriented towards the public good or the good of the population as a whole. Also in public health, you have to bring in stakeholders besides the public. Government, non-governmental organizations sometimes external, aid groups, doctors without borders perhaps. While certainly in personal medical relationships, we don't want the government involved. Quite the contrary, we want decisions made that are just to be between the physician and the patient. And finally comes rationing. So, when my physician deals with me and, and tries to treat me, I don't want my physician thinking about rationing care to me. My physician's responsibility is to take care of me as best he or she can. But when we do a public health intervention, we have limited resources for a population, and we have to figure out how to best distribute that. Which leads us into questions of justice and how we properly manage scarce resources for a population. >> So we have some pretty major differences between biomedical ethics, or clinical ethics, and public health ethics. And obviously, both of these systems are implicated in the case of Ebola. So, what are some of the ethical issues or considerations that we need to bear in mind when we think about something like Ebola? >> So, Ebola is a very particular case, but it has broad implications. So first, I think we need to think about what the relationships are between areas that are underserved, that ha, that struggle economically, and the developed world. So certainly when epidemics happen in places like Western Africa, the developed world has an ethical obligation to provide aid to try to help. But we struggle a lot with what, how far that obligation goes. And then we get into slightly more granular kinds of questions. So a very thorny question that happened in the Ebola epidemic in particular was how do we think about emerging therapies. So we had this treatment that we thought would work and had never been tested in human beings. But now we have an epidemic where thousands are dying. What is our responsibility to try out such a treatment? The, the challenge there, there are a couple of challenges there. One is, we, we have found over and over again, the history of medicine, the treatments that we thought would be effective, didn't work. We can cure almost anything in a mouse. But as soon as we bring it to human beings, we find that we are much more complicated than mice. And the best, by far way, that we understand for testing a treatment is through a randomized control trial. And yet, something in us re, rebels against the idea of doing a randomized control trial that is taking people with Ebola, putting half of them in one group, half in another giving some the treatment, and not giving it to others. We find that to be problematic. So some people, for example, have recommended what's called a historical control group. Let's start giving a treatment to everybody we can now, and look at them compared to how people sur, survived in the past. But that is bad scientifically, for a number of reasons. For example, we know that how well-supported a patient is, how quickly they get support, even if they don't get a, a drug. How quickly they get to a facility, get hydrated and other things, affects how well they do. Well, at the beginning of the epidemic, support was very poor. And support has gotten better and better. So if we start giving a treatment now, we don't know is it the treatment or the better support. So they're all, they're serious and significant challenges around how we test drugs in an epidemic like this. And then interestingly, we had a corollary, a different kind of very controversial issue. So when Dr. Brantley came to Emory, who was the first Ebola patient to come to the United States we gave him this experimental treatment. And I got a lot of media calls, saying, isn't there a problem with taking this, this experimental treatment and giving it to the white privileged physician, when the majority of people with Ebola are you know, Africans in Liberia and Sierra Leone. And that is a tough ethical question. Of course, the alternative was taking an untested therapy and giving it to Africans who have, in the past, been the victims of us trying to find another group to experiment on rather than ourselves. So, in either case, you have an ethical tension and ethical problem. And, part of what I think working through these kinds of epidemics helps us do, is figure out ways to create policies, to think about these problems a little bit more deeply. So that they don't come as surprises in the next epidemic. >> So some of the ethical challenges that we face are really the differences between research and practice. We can have a gold standard for research of randomized clinical controlled trials. But then when it comes to practice on the ground and a real time epidemic, this poses some significant challenges. You also mentioned the case of Dr. Brantley and the care that he received here at Emory in the United States. And so I wonder if we might talk about some challenges in the two contexts in which the disease has taken place, both developing context and developed places. >> I think sometimes people don't appreciate how different the context is, how different health care is in the United States in, than in a place like Western Africa. I mean, Dr. Brantley came to the most sophisticated isolation service in the world at Emory. This was a service built between Emory and the Centers for Disease Control for CDC employees that might find themselves having contracted diseases in their work in other countries, and so it was state of the art. There is no better place on earth if you have an infectious disease than the Emory isolation ward where the staff has been trained for years and years for just this kind of thing. Western Africa, certain areas of Western Africa are amongst the poorest countries in the world. They have electricity for only part of the day, the water supply is unreliable, and sometimes absent. Em, emergency generators are, are very often out of gas which is very rare. For the entire country of Liberia, there really were about 50 trained Western style physicians. For the entire country we have over 3,000 here at Emory, to just give you a sense oh, of the difference. People there are, are suspicious of the government and suspicious of healthcare providers. So you have a very, very different context. You're working in hospitals that are generally blank hallways with multiple beds with, without the kinds of drugs, without the kinds of supporting medical materials that they need to take care of people. And you have people of all ages. So you have children who are infected, you have elderly who are infected, and certainly there's, there's very little difference. There's no pediatric system and, and geriatric system. So trying to understand how we help, how we support that kind of a country's medical system raises all kinds of ethical challenges that are completely different. When we talk about rationing in this country, we're talking about who gets a little more time on the most sophisticated medical equipment in the world. There we're talking about who gets fed. And so, it's, it's a very different context. And as we develop our ethical principles, and we've spent a lot of time and a lot of energy working on, on bioethics and public health ethics in this country. It's time that we spend a little bit more time thinking about what those principles mean when they are applied in a very, very different society and context. >> So we can begin to think about some of the resources issues, which are everything from physical resources, meaning roads. How do we transport people from their home to a healthcare facilities. >> Right. >> The facilities themselves, do they exist. And then what recess are, resources are available in that facility really. Water for infection control. How do you do infection control without a water supply, electricity, and also human resources. Right? So that's a big, big challenge here in the case of these three West African countries that have a real dearth of healthcare professionals. >> So let me give you an example of, of an ethical issue that confronts us around that exact issue. So, we have people at Emory and at other universities and at other health care systems around the country who would like to go and volunteer their time to try to help out in Western Africa. And many, many do. And they're heroes, as far as I'm concerned. However, we have a 21 day quarantine when they get back. So, I leave, I take my vacation time to go to Sierra Leone, and to treat people if I'm a health care provider. Now, I come back, I get a week's vacation or maybe two weeks, and I'm quarantined for 21 days. What is the obligation of my employer, of this university to pay someone or give them extra leave time or whatever it is for those 21 days for something they did voluntarily on their vacation? It's something we talked about on the Ebola Task Force, which I sit on here at Emory. And I think institutions, one of the ways in which they can express an ethical value of helping out in these kinds of dire circumstances is to allow employees who are trained to go and help. And then to support them when they come back if they do need to be absent from work because of, you know, government required quarantine. So, that's an example of a way in which we can have an ethical conversation here about our own behavior that has some impact on a place like Liberia or Sierra Leone. >> Absolutely, and that's been hugely important in terms of the humanitarian response. We know that there have been really very few providers who have been willing to go, and then those who are willing to go face these kinds of challenges when they get back. So, those are real questions for us. Another issue you raised is the issue of trust. >> Yeah. >> And we've talked a little bit about these three west African countries, Liberia, Guinea, and Sierra Leone, and their very complicated histories. >> Sure. >> How does trust play into the specifics of Ebola and the ethical issues behind Ebola? >> So, trust is, is difficult to win and easy to lose. And what's fascinating is you can have different manifestations of trust. So, for example, in some countries, the governments are trusted, but foreigners coming in are not trusted. In other countries, the government is distrusted, and there's more trust of the, of, of aid agencies coming in from other places. In some countries, they don't trust anybody. So we know, in Western Africa there were examples of where people would come in and they would spray, trying to disinfect areas, but they were thought of as have, as spraying Ebola. And they were attacked or, or they, the, in some cases makeshift hospitals were torn down. And so trust becomes fundamental to the way in which we think about our relationship to other countries. There are certain organizations that work very, very hard. Doctors Without Borders is an example, Peace Corp. They will go into an area, the Peace Corp will spend months in an area before they even begin an intervention, and that's trust building time. I think we need to take it very, very seriously because it doesn't make a lot of sense to go in with aid and with materials and with, with support if we haven't built the fundamental human relationships that would allow us to implement those things effectively. >> Absolutely. And that's really important when we think about aid as well because many times aid, as we know, is tied to political interest. >> Yep. >> And so it's really hard to be transparent and be ethical and build trust at the same time, so those are real challenges for us all. So, recently the President's Commission released a report on Ebola. >> Yes. >> And I wonder if you might talk to us a little bit about that report. >> Yes, the President's Commission voluntarily took up the Ebola issue, because they thought it was a very important one. And, and they had a, they have a whole report and they're many recommendations, but I think at the base key to that report are a couple of suggestions. One is certainly to help increase the capacity of the World Health Organization to be able to respond decisively, quickly and with resources. One of the very well acknowledged and recognized failures in the Ebola crisis was a quick response. We knew about Ebola and we knew it was propagating long before we started, we as a world community started mounting an effective response. The second thing they suggested, which I think is crucial, is the designation of a single US official whose explicit responsibility it is to respond to world epidemics. And to have authority that no one has right now to respond quickly and effectively. And also to build our own capacity as a country to respond quickly and effectively, not just in a piecemeal fashion with many nongovernmental organizations, you know, going out on their own, but a coordinated response. Equally important to me as someone who cares about the ethics of these things. They were very strong about the idea that we need to setup ethical principles ahead of time. So that we're not trying to create, we're, we're not stuck with ad hoc decision making on some of the really thorny ethical problems that, that arise and we've talked about only a few of them. But in the day-to-day work in a, in a place with these kinds of, of resource needs, you have ethical questions that, that health care workers and support people are asking every single day. And to have some kind of thoughtful process whereby we create guidance ahead of time, for moving into these kinds of areas, both in terms of the country's response, and in terms of individual health care response, would be a very valuable thing for future epidemics. So, those were some of the main suggestions that the President's report made, and I think it's an excellent report. >> So, we can think about improved response, which is how do we respond better, how do we respond faster, but also preparedness. We talk about emergency preparedness. We talk about public health preparedness. This is ethical preparedness. >> That is exactly right. And they talk about public health preparedness as well, but what I think is a little different in this report. because a lot of people, whether we do it or not, a lot of people appreciate the need for public health preparedness. But the idea of having ethical preparedness I think is a, is a unique perspective that you don't hear a lot. But I think it becomes very important. >> That's wonderful. So that's really something that we can take away, lesson learned, really, for ethics, biomedical ethics and public health ethics. Begin to think about ethical preparedness across context not just infectious disease context, but in other contexts as well. >> I think people think about often, think about ethics a, a little bit differently than ethicists think about it. Every decision we make in a context of an Ebola epidemic, of course, but I think in general context too. Almost every decision we make of importance is based on some set of values, and those values can be explicit or implicit. When they're implicit, when we haven't articulated them or we haven't thought them through, that's when we get into trouble. When all of a sudden we have a really thorny dec, decision to make. And that thorny decision is always a decision, not where there's a right and a wrong, but where you have two principles that you value, that are in conflict. Both good values, both positive values. So, how do you adjudicate between two positive values? Between your desire to serve everybody and your need to allocate a, a scarce resource. Do you go with people who need it the most? Do you go with the most vulnerable? Do you go with the ones who are there rather than waiting for people who are far away that by the time they come, the resource may not be available? So you have those kinds of decisions and they're based on fundamental values that if you articulate clearly ahead of time, and if you think through how you are going to make those kinds of decisions because you've been very clear about which values you're going to privilege over others. Then you don't have to second guess yourself in the field all the time. So I think it's a wonderful exercise. We do it in medicine all the time, and have been doing it for many years. We have constant discussions about which are the fundamental values by which we are going to provide medical care to ourselves. And now we have to discuss, what are the fundamental values through which we are going to try to be of support to people in other contexts and cultures when they find themselves in, in these kinds of dire conditions. >> So thinking through that ethical decision-making process deliberately and proactively, that's a very public health approach, right? Doing it on the prevention side. >> Right, and public health has a long and very distinguished history of thinking about ethics issues. The public just doesn't know about the public health way of thinking as, as much as they do what we think of as medical ethics simply because they're involved in medical ethics issues all the time, with their own relationships with their physicians as their loved ones have issues with physicians. Their parents get older and die, as their children might be in neo, neonatal wards or whatever it is, we see these almost every day. The broader public health ethics arguments are more hidden, because they happen at governmental levels, they happen in schools of public health. And I, I think one of the things that the Ebola epidemic has done is it has heightened the awareness of the public, of the need to think through these kinds of issues as, as the world gets smaller, and these epidemics will become more and more a part of the world community's concern. >> So, we're one year into the Ebola outbreak, I'd like to ask you Paul, what do you see as the ethical issues that we will face moving forward from here? >> [SOUND] I think one of the big ones right now and, and I'm not sure how we're going to address this as a society is compassion fatigue. There are a lot of needs in our world today. There's war there are refugees, millions of refugees all over the world. There are other kinds of health issues. There's famine, there's other kinds of disease, non-infectious disease spreading through especially places in the world that are resource poor. And then there is the possibility of future epidemic outbreaks. It is ethically less defensible to say, well what I'm going to be concerned about are the infectious disease outbreaks because they may affect me. We need to be concerned about the health of people throughout the world because we're one world community and we're a small planet, and eventually all of us when, when any part of the world is in dire straits, we're all influenced and impacted by it. So, I worry, and if you look at American concern about Ebola it peaked at a particular moment. And has declined even as deaths from Ebola continue to rise. There are over 8,000 people now who have died in Western Africa from Ebola. And how do we keep that kind of concern and interest going especially when next week, some other story is going to grab the headlines, and Ebola will be forgotten? So that's one thing, the second thing is what we've talked about already. How do we, as a society, prepare ourselves for these kinds of, of events better? So that each one isn't a surprise and each one isn't reinventing the wheel, both in terms of our public health and, and global health response, and in terms of our principle or ethical preparedness to think about our response and our responsibility. And then, I think the final issue is we, as a society, have to have, this is a social conversation. These aren't decisions that should be happening, you know, in, in closed government offices, or in schools of public health, like ours here at Emory, where we talk about these things a lot. This is a public conversation. These are public resources, we're talking about the response as a society. Everybody needs to have a voice in this, and so the media has a role to play in this. The public spokesman for public health and disease in our culture, those people who tend to be the faces you see on television talking about these things, all need to be part of spurring the public on to think and talk about this. So that we can reach a consensus decision about these things, and we can respond as a society with some compassion as we move forward. >> Well, I want to thank you very much for sharing these perspectives with us, and for raising these really important questions that we all need to consider moving forward. >> My pleasure.
