minutes I get to tell you all about ethics for everything related to organ donation. All right, my slides. Perfect. And this is great for me because most people who know what I do, I'm actually an immunologist, but my previous life I was an ethicist, so this is fun to get to return back to something I used to do. So we're going to talk a little bit about ethics. We're really going to just hopefully just have more questions and really if nothing more be able to dialogue and have some thoughtful discourse. So why are we even talking about ethical considerations and why are they important for organ donation? Well, first of all, we've got two sort of competing themes. We've got a shortage of organs. There's a global shortage, depending on whatever country you look across this globe. But we've got this potential intervention that can save lives and improve the quality of life for many recipients. And so many of these ethical dilemmas are really looking at, frankly, what we hope to be is a balance. We have enough organs for those that need them. We know that in reality that's not true. And we know that the cost-related organ transplants are very, very high. And so being able to appropriately allocate them in the most equitable fashion certainly would be where most of us are hoping to land our ethical dilemmas away. And it's been challenging because the debate about where the definitions of life begin and where death occurs in the human body have been ongoing for many, many years across different cultures, across different countries. And so because of this, there's been many questions that have been raised today about how to procure more organs, where are there new resources for us to potentially, quote unquote, grow new organs, and then whether or not all transplants should be covered and by the public. And although we hope that we would have balance, frankly, the scarcity of organs has really driven most of where we've been over the last 35-plus years. And at times in organ donation, we seemingly are always unbalanced but sitting on something that's never going to balance itself well over time. So the organ shortage challenge. So the primary ethical dilemma is because of that shortage. In 2003, only 19,000 transplants were conducted in the United States while about 83,000 people remained on the waiting list. Now push forward now almost 21 years, there's about 90,000 people waiting. And in fact, depending on if you include what other organs, the most recent was 116,000 when you include all organ transplantation. And 20 people die each day waiting for a transplant, 20 people. And if you look at what folks are waiting for, far and away, kidney leads the charge. But you can see by organs, liver, pancreas, and heart certainly are up there as well. So the ethics related to organ donation are not different than any of the other ethical principles that we've ever adopted in medicine and in health professions. They still rely on those four key principles of medical ethics, autonomy, beneficence, non-maleficence, and justice. So in autonomy, respecting the wishes of the donor and their family, an important ethical principle that all of us certainly struggle with at times. Because not only are we respecting the wishes of the donor, but we also at times have concomitant patients that are recipients in the same intensive care unit at the same given time. Beneficence in maximizing the benefit for both the donor and the recipient, first doing no harm to the donor, even when death has ensued, but harm perhaps to family members that are involved in decision making for that loved one, and how that harm may actually perpetuate downstream effects for that family's trust or distrust of the health system, and how we can ensure well-being. And then finally, justice, fair allocation of organs and resources. And it asks us three key questions if you take these four key principles or tenets of medical ethics. Who should receive transplanted organs, and on what basis should that decision be made? What are the conditions that we allow these organs to be accepted, and how should they be allocated? So I throw these sort of common theoretical ethical dilemmas that a lot of us face in the ethical world. Should a confessed serial killer on death row be entitled to a transplant? Or what if that person on death row was up against a crimeless mother of three, who gets the organ? How do you make that decision? Or what about the alcoholic who's in liver failure versus the patient with a genetic disease that causes end-stage liver disease? We commonly are faced in our intensive care unit certainly with some end of organ damaged by people who've actually been involved in some of that active behavior that have led towards that. But does that mean that there should not be, or they should be precluded from making poor choices, precluded from something that's a scarce resource? So I'm going to start actually briefly to just mention about equity on the recipient side, not on the donor side, because most people would start with the donor side in organ ethics. But I think it's interesting when you think about equity on the recipient side, because you start to think about what are all of the different barriers and obstacles and challenges facing someone obtaining an organ someday? And so if you think about the registration first for that patient on the organ donation list, they have to be referred to a transplant center. They've got to receive donation and authorization. They've got to then go through a specialist and suitability for transplant. They go through biopsychosocial evaluation. They've got to complete that evaluation. Time from waiting to the list for transplantation, it can be enormous. And so you can start to understand that those that would receive an organ, if you have circumstances that would be challenging for you to make appointments, to get to where the hospital or the doctor's office may be, if you concomitantly try to work because you're the only provider in your household, you can start to see that the donors on the recipient side is certainly skewed towards those that have privilege and means. And when we look further at recipients in the United States, black people are four times as likely to develop kidney failure as white people, but they're much less likely to receive a life-saving kidney transplant. They also experience the highest rates of heart failure, but they receive less heart transplants. And the average wait time for a black patient who needs an organ transplant is about a year longer, one year longer, when you match the cases than for white patients. And if you look at other underrepresented minority groups, including non-Hispanic whites, you can see that for liver transplants, for instance, there are substantial inequity in delivery of these organs. So what are the key parts of the organ donation process? Well, identification of donors, consent and authorization, evaluation of donor suitability, and then procurement of the actual organ itself. And in that process, there's an informed consent of the donor or their family members, depending on if they had an advanced directive, if they've actually decided before they were going to get into a situation where they would have to give up their organ or if it's a living donor. They need to have medical criteria. And then furthermore, in that process, there has to be an element of cultural sensitivity, respecting a diverse and cultural beliefs and practices, religious, ethnicity, et cetera. I'm not going to go through this, but there's been a number of different regulatory frameworks, both at the governmental level in the United States, as well as in international societies, including the WHO, who provided substantial framework on how the ethical allocation of these scarce resources should be utilized and how they should not be utilized. And many of these regulatory frameworks were put in because in different locations across the globe, certainly the market for organs to be purchased has been a problem, especially over the last 20 years until some of these key task forces basically went in and basically provided these acts that said, we need to stop these practices that are sadly putting people disadvantaged into situations where they're paying, where they're selling their organs to pay for their family's futures. So what are some of the other ethical issues regarding the donor? Well, if you think about it, the donor pool is all not the same. So when you look at all transplants, we've got living deceased donors, we've got catavaric donors, and we've got living donors, either related or unrelated. And then from the catavaric donors, we certainly have our brain stem dead or death by brain death or neurologic criteria. And then we've got also our death by circulatory arrest or DCD. And then some of the other ethical issues that certainly are specific to the donor that come in with different ethical considerations include anisoflack infants, human fetuses in pregnant women, and certainly prisoners and other marginalized populations. So if you think about how we've been able to ascribe who's a donor, we've actually been either in an opt-in or an opt-out system. These are the two main default options. Opt-in is where you give explicit consent. So only those who've said, I want to be a donor. I'm going to put this on my license. I'm going to put this in my advance directive. Those are giving explicit consent. Some of the ethical challenges that arise are when it's less clear, where there's presumed consent and anyone who's not refused consent to donate and would be considered a donor. And the WHO has clear definitions on how they utilize these two terms for both explicit and presumed consent. And with that, the dead donor rule many years ago became popularized. But if you think about the history behind that, before the advancement of critical care, the diagnosis of death was very straightforward. You were declared dead when you were cold, blue, and stiff. And then at that point, you were called dead. But sadly, obviously, you can't harvest organs from those individuals that are cold, blue, and stiff, at least commonly the way that we think about organs, not tissue. And so most organs do not tolerate the ischemia that follows classic cardiorespiratory death. But the concept of brain death has certainly been ethical and legal justification now, which has led towards thousands of life-saving donations and transplantations. And we've been talking about this probably since the late 1970s, where now brain death organs are considered the principal source of transplantable organs. But it does beckon a number of different questions. Are patients with massive brain injury, apnea, loss of brain stem reflexes, are they really dead? Depending on your culture, your background, your country of origin, this is a complicated question, especially when you immigrate to places like the United States and you still maintain those cultural beliefs. And then is brain death the same as biological death? So in The Princess Bride, if you don't know this movie, we can't have drinks later, he's not dead. He's only mostly dead. Honestly, we come up with, we actually are faced with this probably more often than the latter. And certainly we're faced after that with donation after circulatory death. So if you think about DCD and you think about the cases that lead towards DCD, these are the potential and actual DCDs. So these are potential cases and actual cases that led toward the ability to have donation after circulatory death. And majority of these are certainly hypoxic brain injury, post-cardiac arrest, intracranial hemorrhage, trauma, and head injury. Although there are additional ones, including respiratory disease, ARDS, et cetera. And this is a really nice, I think, pathway that was put out by the European Society on how to approach those that would be potential candidates for donation with circulatory death. If you look at deceased donor rates, this is across countries, and you can start to see that the United States and Spain have certainly had a larger proportion of death from circulatory death compared to death by brain death as compared to some additional countries. And that has to do with differences across these countries and both regulatory and ethical considerations in these countries that would preclude DCD. And this is distribution from 2013 to 2022. And you can see here in blue, this is DCD donors, which has incrementally increased in the United States over the past 10 years. And this is our brain death donors since then. And then finally, this is a nice possible deceased organ donor comparing DCD to DBD and who would be a potentially good donor in those circumstances. And these slides will be available on demand. And you can take a look at this, but this is really nice in the British Journal of Anesthesia. So donors, there's certainly also an inequity in donors. In one large Gallup survey, 72% of Caucasians were very or somewhat likely to donate their organs compared to 52% of African-Americans in the same study. Another study found that only one third of African-Americans plan to be organ donors compared to worth more than half of white respondents, even though we know, first of all, because people I've heard before at other talks say, well, that's really interesting. African-Americans are having delays in receiving organs. And if you were afraid that perhaps there would be some sort of ethnic graft versus host disease that would occur because it would be differences in genetics. That's not true. That's a myth. Okay. It doesn't matter. Everyone should be available to have organs available to them in circumstances, but this is because of problematic and structural and systemic issues that historically have precluded, I believe, people to want to donate. And when you look at this as Caucasians over the past almost 20 years, and you can see the lowest group is the American Indian or Alaska Native, and then certainly other groups that certainly are not at a high level of donation compared to their Caucasian counterparts. Why? As I alluded to, Historic Trust from Tuskegee, Nazi Germany experimentation, and something that we probably haven't talked about recently in this realm, but I'm sure that COVID has certainly now, especially across different ethnicities, had effects because of distrust. And so if you look at perceptions of medical racism and medical distrust, mistrust, you can see that across African-Americans and Caucasians, there certainly is a discordance. What I find most interesting is, do we think that perhaps we're going to have less donors because now they have distrust of the health system after the COVID pandemic that perhaps may not be readily available to remain being donors as we move forward? There's an interesting study I heard about that certainly doesn't have the results yet, but I think that that would be an interesting perspective for us to start to think about is how we can buy back in trust to try to improve our donor pool. So common themes that challenge us, a poor prognosis in our patients, and then as physicians or nurse practitioners, we have the introduction of donation without losing trust, but who introduces LifeBank? Who brings up this topic? Who is the person and should the medical team approach? This has been long debated in our fields. You've got a patient with suffering who's actually not death by neurologic criteria, but you do want to provide them aggressive palliative care, but there's a double effect as you lead and hasten to their death. Are you doing it because there's a double effect because subconsciously you may actually not only improve their suffering, but lead towards ability to get donations sooner. You've got a teen who says on their driver's license, I want to be a donor. Mom and dad don't want that to happen in this tragedy. Happens commonly across this country. And for DCD, how severe is the neurologic injury and how do you communicate that effectively to families? And should financial incentives be considered? This has come up most recently because there was a consideration that if families were paid under traumatic situations for organs with death by neurologic criteria, there may be an increase in actually the donor pool. But is this a slippery slope and what would be the effect specifically on marginalized populations? And then we haven't even touched the surface of what's going to happen with lab-derived organs or xenografts and how these are going to be allocated. And so as we face a lot of these ethical dilemmas, certainly in organ donation, we certainly as clinicians have to balance both hope and reality. We need to manage expectations from donors and their families, recipients, and certainly our colleagues. But I think one of the fundamental issues, and you can see where this goes well and where it doesn't go well, is the ability to effectively communicate with families, but also be able to communicate with LifeBank and all the other medical members of the team. This is challenging because we also face this balance of making sure that we're not coercive in our conversations with those that have not made up their decision without being in discussion additionally when organ donation and LifeBank folks are at the bedside. And the other thing is should we start to consider having culturally similar teams to the donor to assist in communication, to build back trust? We heard from Jerome Adams, he said, when someone looks like me, I have more trust that we actually can come to terms with ways that I can effectively manage my asthma. And one might assume that if we had culturally similar teams in lots of different demographic regions of this country and outside the country, we could potentially facilitate the transition. So there are key ethical considerations that need to be addressed in each organ donation, both at the recipient and both at the donor level. It's paramount to uphold and maintain consistent ethical standards of first, do no harm. Make sure of justice and allocation of these organs all throughout the integrity of the organ donation process. I suspect that most in this room would say that effective communication, good for a marriage, probably good for a relationship at the bedside, are specific roles amongst the ICU team that can allow for us to uphold these key ethical principles. How we can start to understand, I think, differences in age and understand respecting cultural differences will aid in maintaining the ethical integrity. And we need to start to directly address medical distrust, acknowledge these historic wrongs, and work to improve understanding of barriers to donation and receipt of organs. And my Jerry Springer final thought for the day, you will not know if someday you will need a transplant, but how can we engender a culture to promote more opt-ins to be a donor so that selfishly, if you need that donation, you may have it? Selfishism will lead towards altruism. And what are the steps that need to be undertaken to address cultural barriers to this? And how can we build up trust? I think that this is the way that we can provide additional integrity and ethical operation towards a more equitable and available organ transplantation process. Thank you very much for your time.

organ donation

ethical dilemmas

transplant shortages

racial disparities

donor consent