 I would like to turn now to the last member of our panel on end of life and have a colleague and friend that is here at the University of Chicago, Asim Polada, who is a leader in this community, first of all, clinically very active as an emergency medicine physician here. He is an associate professor in medicine, and he is also faculty in the McLean Center. He is director of the Initiative on Islam and Medicine. He did his residency training in emergency medicine at the University of Rochester, received his master's in health care research from the University of Michigan. His research assesses how religion relates to factors that affect health behaviors and medical practices of American Muslim patients and physicians. Dr. Polada is going to help us by exploring the scientific data that work in concert with Islamic moral reasoning and theology to develop a comprehensive, theologically rooted Islamic bioethics. Today, Dr. Polada's talk is entitled Religion and End of Life Care, Accommodating Differing Values, Norms, and Ontology. Please welcome with me Dr. Polada. Thank you, Susan, for the kind introduction. Mark, board of the McLean Center, fellow faculty, fellows, and colleagues. It's a pleasure to be here again. The last two years I was out of town, out of country, and I missed this venue to kind of lay my ideas out there and get some feedback. So I'm really glad to be back here and we do so today. And talk a little bit about this relationship between religion and medicine, which is what I think a lot about. So you'll see how I think about it today. In the popular imagination, when we think about religion and health care, oftentimes it's in the sense of a conflict thesis. And that conflict is then leads to conflict in the court system and by state actors have to think about how we accommodate one or the other. So in this example, we have the notion that some religious ideas lead people to want to not get the health care that we believe they should get, or in this case, their child, that leads to a court case. Or in another case where someone's notion of what our end is or what our end can be or what it means is different from the medicalized notion of what death is. And that, again, then moves to the court system. Or how we should reach that state of death, what are the responsibilities, as you just heard, of physicians pervading that final or getting to that final state that leads to a conversation between state actors and physician associations about what the physician should or should not do, can they refer or not refer. And then recently, we have state actors in our own country here thinking about where religious freedom resides and where conscious causes reside in the deliverance of health care. This is not just for religion and the delivery of health care, but even in the field of bioethics is a question of where religion resides. Just a few years ago in a preeminent journal of our field, the American Journal of Bioethics, there was a vigorous conversation about whether or not religious argumentation, religious language, religious values are part and parcel of this academic field. And more recently, in the Journal of Developing World Bioethics, the editor of that journal offered this commentary about where he feels religion belongs in the space of his journal. And he makes the argument that religion-based arguments don't fall in the category of public reason-based arguments by default, that religious bioethics scholars, they analyze what they describe as their preferred religious policy and regulatory provisions and their implications for bioethical questions. Their contributions would only be appropriate if they're articulated in terms of broad, if not universal appeal, right? So the discourse has to be encoded, decoded, or marginalized of where religion falls within the field of bioethics. Again, within the Journal of Developing World Bioethics. So as someone who dabbles in religion and dabbles in bioethics or clinical ethics mark, yeah, the question is where do we reside? And for us, I think this overtone is about a larger conflict or a sort of imagination of this line between science and religion. Where science is the domain of empiricism and religion is the domain of superstition. Where science is the domain of rationality and religion is the domain of belief. And where science is universal, but religion is particular, right? And this is the caricature of these two bodies of knowledge. I actually really like this cartoon here because not only do you see all of these two, there's the line, there are the tools of each of these domains, but you see people are towing the line and people who are looking away, huh? Where they sort of the idea that maybe perhaps evangelical Christians toe the line and Muslims just turn away from the debates. This is the public imagination about religion and science which spills over into religion and medicine, which then spills over into religion and bioethics. I would suggest that as long as we think about these things as cultural systems, there's a way to make a negotiation between the two. That in so far as religion has authority structures and it has lexicon and vocabulary that is only understood within that community, so does medicine. That there are authority structures, there are language that conveys symbols that are only understood within the context of that domain. Just like maybe religion has a notion of why or tells you why something happened to you, so does medicine. That your symptomatology, right, is explained by a certain notion of what's happening that some other people might not buy into. And just like religion has texts upon which they build moral systems, right, so does the practice of medicine. And so they are both cultural systems that have convergences and divergences, that they both in the convergent space respond to human careers and needs. What are we? Why do things happen to us? What will be our end? And those questions are answered from different frameworks of epistemology and ontology. But they are answering those questions and if you think about it in that way, the conversation of religion and end of life can be had. And you can come to a meeting place in between those two. So conceiving of medicine and religion as cultural frameworks with their own bodies of knowledge will lead to a greater understanding of patient, provider, family, behaviors, words and actions. That in this way it would provide insights into why some people hope for miracles and take medical recommendations with a grain of salt. Why some people oppose withholding and withdrawing life support. Why pay-to-care is a foreign concept to some communities and why indeed, pay-to-care consoles are hard, right? And it would generate enhanced models of communication and negotiation. So what I'm going to offer is a practical framework, maybe you can think about as an implementation model or ethics implementation model around how we should engage with this. If there is a question of religion and end of life care that we start off by discovering the meanings and values attached to things. That we consider the norms and constraints upon both the patient and family behaviors as well as those of the physician and the allied healthcare professionals. And that we come together to negotiate and accommodate both the actions, what we do do, and the non-unctions, what we won't do together. And all of this has to come together with an ethos of cultural openness, humility, of moral non-superiority and toleration of inconvenience, right? And because we are the ones who have these big halls, then we must perhaps tolerate more inconvenience than the patient who is inconvenienced by coming to us, having to leave their home and come to us, right? So religious ontologies, and I'm gonna talk about ontology values and then we're gonna get to norms and constraints, but let's start for the moment with ontologies. So religious ontologies are a way to make meaning for things that are happening or to understand where you're at. So, and these all have ramifications for how those end of life care conversations will ensue. So divine determinism or fate or fatalism versus individual agency, how do those ontologies think about that? Do they think about the notion that the soul inhabits the body and therefore the functions of the body are actually, is animated by the soul? That has a relevance for end of life care or that other beings can inhabit humans and influence their actions and outcomes. So you all remember one of the clear texts that we read by Annipa Fadiman, right? Has this notion, right? About other beings inhabiting and influencing actions. And this is relevant for the ontology of cure and disease and the usage of different modalities of treatment. So that first headline, right? About worship-based practices. It relates to an ontology of cure, right? How do I move from illness to wellness? How do I engage with various modalities of treatment? Has an ontological framework, overarching, archeological framework to which people are moving, right? The acceptance of brain death as quote unquote true death or death and dying, virtual accommodations, right? I remember a case and if I have time, I'll talk to you about that. But there's a lot of accommodations that have to happen in rituals of dying. But they also relate to an ontological schema. In terms of valuations of life, right? Values, so these cases you will see have a notion of perhaps, or you would think perhaps there is a conflict between the purveyor of healthcare and the recipients. Where a 65-year-old patient with progressive ALS asks his Catholic physician for a prescription for a barbiturate for aid in dying, right? Or an orthodox Jewish family, right? Of an individual who has stage four love cancer, progressive dementia, recurrent aspiration, refuses the paediatric care consult and will not authorize a DNR, DNI order. Or a 72-year-old born-again question with end stage multiple myeloma refuses narcotics leaving this is some sort of penance. Where we have and we, but in this case, we as the healthcare system have an ontological schema and a value system and a valuation of life and the patients might have a different one. And this relates to the purpose and utility of life. Is life about performing good works? Is it about making? Or is it just about enjoying good experiences, living a fulfilling life? What does that mean fulfilling, right? Or is it about the righting the wrongs of previous generations and previous lives? So you must now make better with what you have, perform salvific acts. Or is it about engaging in this temporal state of disconnection and disharmony with the hope that you'll be rewarded with harmony and togetherness. All of these sorts of valuations of what life is relates to the decisional frames of quality of life and goals of care. The lingo of do everything or to reduce suffering has some notion of what the valuation of life is underneath it, undergirding that. That language is deployed strategically, right? And it also has ramifications for the manner of meaning death, whether it's through physician aid of dying or other means. At the same time valuations of life also have this relationship to the inception, right? And I'm only putting this slide in here, you'll see another slide here, because for some even those early questions are about meaning death. What do I mean? Those beginning life questions around abortion and fetal burial have to do with death. They're an end of life care conversation. But if you don't understand that that's the way that they view life, that's the valuation of life, then perhaps you don't see that as a moment to engage in conversation around that. So is the exception of life with conception or insolvent or self-awareness, right? What does that mean? Because the opposite of that would mean that is the end of life conversation. And then continuing with this valuation notion, rights and respect accorded to the person in the body, whether there's a right, there's a positive, I mean there's a right to not be interfered with, right? Or a dignity of the body or inviolability of the body or protection from vulnerability, these all relate to the valuation of that thing that's happening, that occasion of life that is occurring. And it's relevant for our conversations and the ethics and the ethics domain we talk about organ donation, right? As the suffix children, can we do donation there? Brain death, all these sorts of things, but they have, under guarding them, this notion of what is that patient that provided that community, that healthcare system, that society, how do they evaluate life? Moving to norms and constraints, right? So think about the case of a two-year-old male with trisomy 21, right? Who had unsuccessful ASVD surgery and is in the PQ for many months, has a trach, develops progressive heart failure and recurrent bouts of sepsis because of ventilator social pneumonia, right? And that the parents in that situation are Syrian refugees who live in the house of the husband's father and they differ all the decision-making to that grandfather of the child in this case because that is the individual who financially supports the household. So this notion of how constrained I am culturally and making an autonomous choice or making a decision for my child has to do with this notion of what the constraints are culturally. For a family that comes here and there's only one person providing for the entire group and their refugees, how do they think about their autonomous decision-making? Or this is another, these are the real cases, by the way. The Muslim Medical Association of Canada filing a lawsuit against Ontario's Department of Health for infringing upon their freedom of religious practice because they had in law this duty to refer for physician aid and diet, right? So the notion is what are our constraints as religious actors providing healthcare that are the reason we provide healthcare is because we think this is a religious good. Now, how do we deal with the state when they're thinking about constraints and on our ability or are forcing us to do certain things that we're not able to do, that we would like not to do? So this relates to this notion of decision-making. Again, end of life care is not, it's just one example, but throughout healthcare that our norms of how patient parents are stewards of children and how they're supposed to make decision-making or whether family should be involved and how should they be involved, there is a notion of how you value, how you, I'm sorry, of the constraints upon how decision-making should be made, what the norms are within that society and that culture, right? And medicine has a culture just like any other framework. These all relates to all the decisions that we make near the end of life and particularly, and you heard today about shared decision-making, right? So we can have models of shared decision-making but if they don't meet the models that are employed by the communities that we deal with, then we'll have cultural dissonance. The culture of medicine meets up against another cultural framework and we don't know how to negotiate and accommodate. So that's the discovery part, that's the consideration part and let me share a few thoughts on the negotiation and accommodation part of the actions and the non-actions, the things that we do and the things that we decide not to do. So, you know, or you heard earlier today, this notion of accepting of accommodation, right? And Mark's wrote this paper many years ago about accommodation, a term that I also sort of take from Mark and try to build it up a little bit further. But the notion is, as healthcare providers, you might accept preference-based variations in care at that patient provider level sometimes, right? That we are okay and we might be okay with doing things differently at that level as a one-off, you might accommodate certain rituals, you might make modified treatment plans, you might do that, right? And that our peer community on the ethics consultation team might say that's okay. But when you move beyond accommodation that the patient provider level to more communities and healthcare systems, this is where you find there are more challenges to be had, right? When you want to implement practice-based accommodations, institute new norms and patterns for healthcare delivery, right? So for example, there are places in Michigan, I used to work there before I came here, where they do not ask about decision-making near the end of life or a particular religious group. They just do it. They absolve the families of decision-making, particularly regarding brain death because of the harms that that causes. They have instituted a policy. It's unwritten, but the nurses know and they educate the residents about how to go about this. Moving from the hospital system to now thinking about developing policies at the state level, the legislative, the state or the national level, right? Do we accommodate different notions of how feelable it should happen, right? Prior to six weeks, if people believed there was needs to be not an incineration, something else should happen. How do we deal with that? Because it is also another incidence of end of life for some people. So let me share with you in the last few minutes I have a story, right? And then kind of share with you what I think could have happened better. And this is a case that I always asked to comment upon many, many years ago, but briefly there was a family, a refugee family, who was in an accident. The pregnant mother had an injury that caused her to be declared brain dead, quote, unquote, right, in the hospital. The husband and the family was asked what they want to do, conferences hadn't happened previously. They wanted to involve a religious leader. They bring their religious leader in and they say that removal of life support were constant murder and Islamic law. So the hospital then brings in the ethics committee to talk about this. Many things happen just to keep it brief. In the end, the hospital denied the request for further religious consultations and with true life support. Now this is in Michigan. There's no exemption, right? They're like in New Jersey or New York and sometimes in California, but this is what happened. And a civil suit, that's why it's a civil suit and suit. Now, because oftentimes I'm trying to talk from a perspective, from the well of what Islam says or how Muslims deal with things, I'm gonna share with you some of the ontologies and the values underlying this case, just as a learning point, right? So this notion of life and death, there was an ontological schema here. You remember there was a pregnant woman. There was both the fetus and the mother to deal with. So there were two lives at stake when the decision was made to declare one brain dead and the other whatever, right? But there was two lives. And this is a prophetic report that talks about how we think about the inception of life. And it is tied, and I'm not gonna read it for you, but you can see that there, tied this notion of when installment occurs. And on the basis of this, there are two views, two dominant views, that 120 days, because you see there's a 40 day period in the hadith and one says it's all 40 come in one time, 40 days. But the point is that installment occurs either at these two times after conception. And that relates to either whether there are two lives or one life in this case. And the opposite is when death occurs, is when that still departs. So this ontological schema and this understanding was always at play in that patient and that family, or in this case the family and the religious leaders conversations with the healthcare provider. The other notion at play was the notion of willaya or moral responsibility and culpability. That each one is responsible, that everybody's responsible to God, right? For their flock. So the husband in this case was responsible for that flock and that flock was the mother or his wife and the child. But in this particular strain of religious Islam, it was also that the religious leader was responsible for them. That the religious leader now became morally responsible to God for the decisions that that father made vis-a-vis the pregnant woman and that potential child. And in terms of brain death, right? This is a debate, neurologically for death, our debate within the Muslim tradition. You'll see here the three views here. All of them are actionable. That brain death is death. The religious scholars and physicians came together at several meetings. I'm not gonna go with that. That's not today. You can look five years ago, I gave that talk here at McLean. You'll see that in 15 minutes. But in any case, three views is either legal death or it's a dying state, it's unstable life or actually it's a living state. And this group came from the Shi'i tradition. So the notion here was that brain death is not death. You must not participate in this conversation because you'll be liable for sinning. So what does that mean? I said, so you had ontology, constraints on decision-making and values what that brain death state meant, right? And if we were thinking about this in a different way, I would propose that there were several possible solutions to this quandary, not going to the legal system, right? Not going to the legal system. I think you've harmed the relationship between the healthcare system and the community or the patient, the provider, if that's where everything is eudicated. But you could have used strategic language, right? This notion of removal of harms and duty to protect from harm for someone who is now having tubes down their throat, having IVs in their arms, right? And that there's no possible way to make that person come back to talking state, right? That is acceptable as part of the tradition. You could have used that sort of language, which was not deployed. Or employing a different decision-making model. I already told you about this absolving notion that is acted as soft policy in certain hospitals in Michigan. That you just actually don't ask. You say, this is the medical decision that was made. That needs to be done at this point. Or discussing with a religious leader about notions of miracles, which is also prominent, right? So how do we think about miracles? Is medicine the be all end all? How can that happen? There's another case where actually in a different context, where this notion of miracles, the religious leader ends up saying, you know, let's give God a chance. Let's take off all this stuff, see if a miracle will happen for you. Because you partnered with them and understand the ontological schema of what was happening or what could happen. Or just letting law be the bad guy. We don't have any exemption here. I am sorry. I don't know what to do here, right? But this is the law of the land, right? And then you are not, their moral responsibility is taken away from them as well. They don't have to engage in this conversation. So all of these things have been done, but none of them were. So my advice for us is that, you know, you're often resource poor, being intellectually, fiscally, time-wise, right? But we shouldn't be making hasty decisions. We should take the time to gather family, to get ethics or religious support when we have this notion of conflict and religion or religious values and the way that we would like to do things in our medical culture. We should recognize the language of framing matter, right? That you should develop and you should particularly develop an understanding of the concepts of import to the communities that you serve, right? I'm not saying that you know everything, but you should know that the way you're talking about something has a certain response within that community. You should have that savviness, that you should not or that you should air to defer to family and specialists in these conversations when you don't know, be humble about what you don't know and bring those people in, whether they be from your healthcare team, whether they be outside of that. And yeah, I always talk about, we should talk about religion or we should be able to engage in people's world views, but there is also a problem if you do it in this way. So with that I'll end, thank you. Hi, my name's Chloe. I'm a first year student here at the medical school and I was wondering what you see the role of chaplains in a hospital setting is and how you work with them in your care team. Yeah, so I think the role of chaplains is immense, right? They are these and some colleagues are both ethicists and chaplains. My experience has spent a lot of time working with the Muslim community and there are not ample Muslim chaplains of trained chaplains or people who understand Muslim versions of chaplaincy around oftentimes. And that community oftentimes is a physician who is everything, right? He's a medical doctor, he's a religious consultant, he's the one talking to any man, he's the one talking to everybody else. And so this is what ends up happening, but I do believe that that intermediary role of actually a community chaplain, someone who's connected to the communities that people come from, also connected to the hospital system, is a way forward, right? Where you have a foot in both worlds, you're not, you know, you can create that little vocabulary that makes people better able to accommodate those different value systems that are meeting in that encounter. So I asked the model of chaplaincy I would advocate where they're actually within from and part of the communities that are served and then the healthcare system. Thanks. You're welcome. My name is Lauren Berninger, I'm an internal medicine resident from Baltimore, Maryland. I work in a Jewish hospital system, so we have a large number of North and West Jewish patients. I've had the privilege of working with both Holocaust survivors and family members of Holocaust survivors, which this population, obviously, life is very precious to them. We've involved, you know, multiple religious leaders in our community, as well as the ethics committees. And there's a lot of times where we just can't come to an agreement between the medical team and the religious community regarding end-of-life issues. So as a result, there's a lot of moral distress among residents and attendings. I'm just wondering if you have any comments as to how you can kind of deal with that as a medical profession. How to tend to that, yeah. Yeah, so in my talk here, you see I'm trying to move in some sort of framework where you see things as somewhat equivalent. I'm okay with your ontological scheme, I just need to understand it, but you also need to understand my ontological schema. Your epistemological framework, I need to understand, but mine as well, where we're equal or quote-on-quote equal, we can't equalize it totally, right? They're coming to you for something, they have a need, and therefore you have a greater responsibility because they have a need in coming to you, but if you can move beyond this instance here and think about their equivalent systems are happening. And we need to be able to figure out where there are harms on both sides. So I agree with you that moral distress is a big problem, there's a harm on the physician side. The family, right, and one of my mentors says the family lives on, whether the patient dies or not, and what harms have you done to their decision-making when you've sort of enforced something, all right? Or they think you took the life of their loved one. So I think there are other harms as well. Now, harms should be removed on both sides. And can we find some sort of solution to do that? And that's what actually I find personally, nurses and chaplains should be the biggest allies in that. The biggest allies that we don't often recognize that they can see both sides and are able to sort of make your distress level go down, right, by framing language in a certain way, and theirs as well. So I don't have a solution, but I'll tell you that is a burden that we face. And when you don that white coat, you're gonna be faced with situations either because of state law or the patient or anything else, where you're gonna be distressed about what profession you joined. That's an ethical problem, but it's one that we have to deal with and negotiate with as part of the profession. I wanna thank our panel. We will take a brief break. Mark Ziegler suggests we be back at 325.