Advance Directives, Surrogate Decision-Maker Disagreement, and Religious Commitments

All right, Devon, I got a question for you. All right, what's that? So the case this week is talking about part of the case deals with advanced directives. And so advanced directives are something that we deal with quite frequently. But also, there are an opportunity for people to put really unique or personalized requests into them, what they would want to happen at the end of their life. Have you ever seen something in an advanced directive of any type of document like that that has surprised you? Typically, no. I'll just say very few people have advanced directives, unfortunately, and very few of them are interesting in any way. They're typically just like the state form, or you check a couple boxes or don't check a couple boxes. Prior to moving to my current job, when I was in Michigan, we really promoted the form five wishes, which is a kind of alternative advanced directive that gets into how you have the conversation and things to think about that aren't purely medical. I really like it. It's not like a quote-unquote legal document in Texas. But I got one once where you open up the chart, someone says, oh, I think she has an advanced directive, because it was some complicated things were happening around what the kinds of decisions the surrogate was making, because the patient was in a situation where she couldn't make her own decisions. And one of the pages of five wishes has a bunch of really nice things that your family or a health care provider could give you that would make you feel more comfortable at the end of life. So things like, I would appreciate if somebody massaged my feet with oil-- I don't know, that sounds lovely to me. So that would stick out my mind. But yes, everybody should be-- That sounds terrible. I can't imagine anything worse than somebody rubbing my feet with oil. Sounds good. So that one's a guess for me, no for Tyler. There are some others that are about the kinds of, would you want somebody to read to you or sing to you? And most people I think would find that nice. This particular patient had crossed out, read to me, sing to me, and wrote, and very bold letters like, do not sing any hymns, do not read any Bible verses. Oh, my goodness. It was especially funny because her family had been doing exactly that the entire time. It was in the hospital. So we were like, oh, no. Yeah, I wonder if she knew that they were going to do that. It was pet peeve throughout her life. It must have been right. Never do it. So she was so particular, and then they were doing it. And then it was this question of, well, should we tell them to stop? What if they don't? What do we do? Do we kick out the family who was singing hymns? Because it violates the five wishes. Right. Interesting. It's so interesting how people have really kind of unique things that they care about towards the end of their life. So there's a friend and colleague who we both know who is not fixated, but who's really interested in getting fresh, crisp, like cool pillows. That's something that he is really interested in having at the end of his life as an active service and love and making sure that he's being taken care of and stuff at the end of his life. But yeah, pillows. I will say hospital pillows are the worst. Like you almost want to bring in your own pillows, because they're so flat and you almost need 10 of them to prop your head up a little bit. So I kind of get that. Yeah. Yeah, other end of life kind of preferences or desires. There was-- I had a patient once who was obsessed with Notre Dame football, University of Notre Dame. And he said that as long as he could sit in front of a TV and watch Notre Dame football, like that's all that he wanted to be able to do. And it turned out that he had a neck injury and was paralyzed, but was still able to sit there and watch Notre Dame football. That's a good one. I always love the cases where somebody writes out the living will with the MPOA and they choose somebody to be their MPOA that the whole family is just like shocked by. Like, why would they choose that person? But they very deliberately did. And often they don't tell their family that that's the person that they chose. So it's always most complicated in my experience when it's an X. So like an XY for an X husband, when you're remarried. And now there's all those complicated family dynamics. Because typically, if you get divorced, obviously the state laws that they are no longer, even if you designate them. But sometimes they redesignate them. Yeah, my wife of 20 years just knows me a lot better than my current wife. So I want the XY to make decisions. And that just kind of can create chaos when there's multiple children from different marriages. And that seems like an unnecessary chaos bomb at the end of your life. Maybe that's what they want. Maybe I can appreciate that. Well, today we're going to have a case where there's an alternative kind of advanced directive being proposed. And one that doesn't seem to really match with the patient is saying, well, she's capacitated. So I think this is a really interesting case brought to us by a friend. So get ready. [MUSIC PLAYING] Welcome to this episode of Bioethics for the People, a podcast where we discuss bioethics in all the complex questions related to medicine, health, and society. I'm joined by my co-host, Clinical Ethicist extraordinaire, sometimes lawyer, and all around boss at Western Michigan, Tyler Gibb. And she is the Bertha of Babies, the Bertha of Books, the Baylor Bear, the Bell of Bioethics, Dr. Devon Stone. [MUSIC PLAYING] Welcome to this episode of Bioethics for the People. Today we're honored to be joined by Dr. Brigetta, Sue Jack McAwitz. She's the central region director of ethics at OSF Healthcare and an ethics faculty member at the University of Illinois College of Medicine in Peoria. Welcome, Brigetta. Thank you. All right. You said you had a very juicy case for us today, haunting and yet complex. So how does this case start off? Well, this is a case that troubled us at the time and has continued to trouble me over the years, because I think about all of the different questions that were there, the presumptions that were there, the possible outcomes that were there. And just, of course, the human story, which is at the heart of all of our cases, the human person, the patient, and the professionals working with the patient and the patient's family. We had received a consult from our medical ICU team from one of the residents about a patient who was in her early 30s, an African-American female, who is a member of the Jehovah's Witness organization. And she had had a cesarean section two weeks prior. And in addition to the newborn, she has a two to three-year-old child at home. And she's recently been diagnosed during this most recent pregnancy with lupus. And at admission, she's anemic. She has thrombocytopenia and acute renal failure. And her hemoglobin is extraordinarily low for our clinicians. It was down to 2.8 when the consultation was requested. The narrative-- So I just want to interject and ask a couple of clarifying questions, Brigetta. So, and so she is a member of-- you said the Jehovah's Witness community. And I think that's going to be the topic that we circle back to. But some of the other medical stuff, just so we're on the same page, lupus, anemia, chronic kidney disease, to walk us through what's going on with her. So what's going on with her? She has all of these conditions that are sort of working against her, right? They're all high-risk conditions. Of course, with her just having had a baby, you get the different issues that come along hemodynamically with that, having the increased blood supply, having the cesarean section, all of those different things. And then, of course, the fact that she has acute renal failure as well. So she needs ongoing life-sustaining therapies. And she's also in a very tenuous position postoperatively from having her C-section. Because we know that a cesarean section is a major abdominal surgery. It's a common procedure, but it's not a minor procedure. And so the fact that she's come back to the hospital and she's in the ICU is really concerning. The things that deteriorated this far. Gotcha. All right. So she is in the hospital. You said that she had a C-section a couple of weeks ago. And her red blood count, is that what you-- is really low? Her hemoglobin? Yep. It's down to 2.8. So that's a significantly low-- Significantly low. Yeah. Dangerously low. OK. And this is interesting because of her membership in the Jehovah's Witness community or faith or church, however, we're describing that. Yes, it is because of course, because she's anemic, because her hemoglobin is so low, normally we would do a blood transfusion for patients in that situation, particularly with all of the other things that are going on. And she and her husband have both been members of Jehovah's Witnesses since they were teenagers as the narrative that we received when we get the consult. And we're told that the patient's parents are also members of the Jehovah's Witness organization. So there's a lot of moral distress in our care team and our staff. They're reporting that the patient is expressing, she wishes just to go home and be with her children if she's going to die. She wants to spend any remaining time. She has left with them. The husband says, look, I just want to talk to someone. I feel like my wife's been altered. I feel like she's been confused the last couple of days, which would not be surprising with such a low hemoglobin. And initially she was refusing blood, as we would expect. But now she's stating she may want blood. And so the question becomes, is this something that's a freely chosen thing? Is this because of the more urgent grave nature of her condition? And he's also now considering that he would be in agreement with her receiving blood. And so we start our conversations with the MQ team, with the family of the patient. We of course are going to speak with the patient, but she's sleeping at this time. And so we just want to hear from the family, from the team, what's going on? Where are they at? What questions do they have? What concerns do they have? And we also talk specifically with the patient's nephrologist. And the nephrologist is really adamant that we not coerce the patient or the family into anything. And of course, we're never intending to coerce a patient into a particular decision or manipulate a patient. We're not going in with a particular end goal in mind. Our role is to make sure that questions are being answered, that we're having good communication, that values are being explored. And the nephrologist says the patient was so adamant in the refusal of blood products in the beginning. So there's this concern for manipulation and coercion. But then he says, but the patient then did accept fresh frozen plasma. And everybody kind of scratches their head. And nephrologist says, look, it would also be nice if everybody was on board with a decision. The patient, her husband, the family, which of course, while it's certainly great to have patients and their loved ones in agreement, we know that that's not always realistic and it's not always desirable, either necessarily. So it was an interesting sort of perspective that we were bringing given. And as we start talking to people, we looked more into things and you go back, you read the chart, talk to people. And it's oftentimes not uncommon that we'll hear, you know, what the patient was confused. Right. And you say, okay, well, what does that mean? What was it that the patient was doing that made them confused? And in this case, it appeared that these reports were mistaken because they were related to a misunderstanding that the patient was stating that she had been persecuted in this hospital for 15 years. And everyone was like, well, that she's only been here for a couple of days. Like that doesn't make any sense. She's never come to our institution before. So that's not even possible. And then others on the team said, you know, but if you really sit down and listen to what she's saying. She listened to the whole narrative, what she seems to be saying is that she's been persecuted for her beliefs as a Jehovah's Witness for the past 15 years, which would have, you know, matched that timeline of being a member of the organization since she was a teenager. She's in her early 30s now. And, you know, everybody says, okay, well, let's figure out what are we going to do here? So, you know, we're working, we're gathering, gathering different resources up, you know, talking with people. And we learned that the patient's husband has been in contact with a hospital liaison that's a member of their Jehovah's Witness Church. And the hospital liaison's are someone that the family can call on or a patient can call on to get guidance about what the organization teaches what limitations there are on accepting certain treatments or not accepting certain treatments. So they're meant to be there as a resource to the family. So. Brigadier, quick question. Is that unique to members of the Jehovah's Witness community or are these liaison's common in other hospitals and other situations as well? I am not familiar with any other church or religious organization that has a resource like this. I think the closest thing that we would find would be in Catholic health care where you have SSS who are trained in the Catholic moral tradition, where if a family is a member of the Catholic faith and they had questions about that moral tradition, they would have access to that resource. And so in that sense, that's somewhat similar, but again, not exactly because we're not there to make sure that a particular teaching is being followed or not followed or something like that. I think it's really. It is a very unique. Yeah, it is very unique. And certainly as I've worked with liaison's over the years, they've got more reference materials, more resources for their members. There are some things that they say are matters of conscience that the organization is not spoken on definitively, but they'll allow the member, the individual member to decide that'll come into play later in our case. And so it is sort of unique. And so when we're introduced to these people, we have an understanding based on the narrative that they are someone that the family has welcomed into the conversation. The family has been talking with them. They're fine with giving information. This is what was narrated. And we. Talked to the husband, we find out, "Okay, he's been in contact with the liaison, he's been in contact with elders from their church." And after initial conversations with them, he and his wife decide that they'll accept the fresh frozen plasma. And then he indicates kind of in various ways. There's some things he says, through some things he doesn't say, that he's really had all the conversation he wants to have with these liaison's. He's had this initial conversation and he says, "Look, if I have more questions for them, I'm going to contact them again if I need to." And we in fact did affirm. So let's be clear, they're not a part of this conversation. He said, "Right, I've got the information I need. Thank them and I'll call them. Don't call us, we'll call you sort of situation." He tells us that he had to work very hard to get the information he was looking for from the liaison. He wanted information so that he could read it, so that he could discern, right? And based on his understanding and interpretation of the information, you know, what was allowed so that he could inform his conscience and so that his wife could do the same thing. And it took a long time to get that information. We don't know why the information was delayed. I don't know if it was just simply a matter of them not having ready access to the information that he was asking for. I don't have any reason to think that there was any ill intent in the delay in the information, but the husband is getting concerned because, you know, his wife is not doing well and her hemoglobin keeps dropping. And even though she is communicative right now, there's a great concern that soon she won't be. And there's also a lot of surprise from the team that she is as clear as she is right now, given her numbers. Of course in medicine, we're always taught, look at the patient, not the numbers, but when the numbers are so extreme, it becomes hard to ignore them, right? It's really something that's troubling. So we're getting it. So this part of the story is interesting because my experience with liaisons is that they're, they can be incredibly helpful, right? So you might worry that they're being, that they themselves might be a little bit heavy-handed or manipulative, but that's not typically been my experience. It's been more that they're incredibly helpful, that they're unusually knowledgeable about what Jehovah's Witness stances are on various blood products because it's not that they actually won't use any blood products. There are some that are allowable and some that aren't. And they are up to date on the latest knowledge of, of not only those products but other witness beliefs. So the fact that they're saying, you know, they're being kind of slow and they're not being terribly helpful, that's unusual in my experience. And it, so I wonder what's going on there. But I also, sort of my gut is now saying they want to make this decision themselves, the patient and her husband, you know, maybe these liaisons are not actually being helpful, is that what you're thinking here too? That's what I'm. that I'm thinking here too. And this case took place probably more than a decade ago. And it was one of the first opportunities I had to work directly with liaisons. I had been, I had the same understanding that you had. And so when I met them, I was very surprised. When I was hearing this narrative from the family, I was very surprised. And like you said, I saw them, I had been taught that there are resource to the family. And so when the husband said, we're kind of, we've got what we need, right? And sort of dismissed them, or just said, thank you very much. I was surprised as well. And then I started thinking about the narrative. And of course, our narrative shapes our beliefs. The narrative that we received shapes our beliefs. It was a good reminder to me to step back and say, what's really going on here? Are things as they seem? And people always say, well, what's the hardest part of doing an ethics case and ethics consultation in the real world versus in a classroom, right? And usually in a classroom, what you've got is you've got the narrative. It's there. It's not changing usually. There aren't all of the different dynamics and different emotions going on in that narrative. You can write a very complex narrative, but when you get to the real world, there are so many things that can change so quickly. And what you think was true five minutes ago is no longer necessarily the case. And that can change your whole perspective on the case. Interestingly, the husband told us that one of the things that the liaison had told him was that even though there are certain things within the tradition that were matters of conscience, that in their case, they shouldn't accept them. So sort of, yes, this is open to your discernment of your conscience, but we're recommending you don't accept them. And the narrative that was given by the family was that this is a trial for them. Their faith was being tested. And I don't know if this was the liaison or the elders, right? There were a lot of people that they were talking to within the community. So I want to be very clear. It wasn't necessarily an official representative of the organization, but church members had said to them, you'll look, this is a trial because you haven't been involved in the church as much as you should have been. You've been away from the church. You haven't been attending. So now God is really testing your faith in this moment to see if you're really being faithful. - And being faithful in this context would be to refuse the blood products. - That was our understanding, right? And not only refuse the blood products that are sort of de facto ones that aren't supposed to be accepted, but even ones that are left to matters of conscience, it was almost like a challenge, right? Show us that you're really faithful and have this strict conscience interpretation. It was very interesting and very concerning because certainly it wasn't what we had expected. We did learn that the liaisons were speaking independently to our medical team, telling them like, you can do this, you can't do that. We quickly put a stop to that, especially since the family had said we're done and they exited stage left. They were reportedly calling the family. The family just stopped accepting calls with them. And so we thought, all right, well, let's, of course we really need to talk with the patient and the patient wanted to have her family involved in conversations. And as we're talking with them, they're discussing their persecution over the years for their beliefs, their desire to follow the teachings of their beliefs, but they're having distress over the consequences of their choices and the information being given to them, right? If you don't do X, if you don't do Y, this is the likely outcome. And of course, we always talk about patient autonomy and a patient making a free choice, but we know that our patients live in communities of relationships, just like all of us do, right? This patient's decision isn't going to affect just her. Certainly it's going to affect her family at large, her husband, but also her very young child and her newborn child, who potentially could end up without a mother. And so, we affirm with the patient and with her family that we are going to respect the choice that she makes, right? We're not here again, we're not here to coerce, we're not here to manipulate. We acknowledge that the information we're giving is very difficult to hear, right? Because sometimes people say, well, look, we've told you and you're trying to convince us to change our minds by giving us this information. And one of the things that we wanted to be very cautious with was sometimes people will say, I've made this decision and I don't want to talk about it anymore, right? Decision made conversation done. And I always think about informed consent. It's not that discrete point in time, right? It's not just that signing of a form. The signing of the form is the result of a conversation about risks, benefits, burdens, options, in light of the patient's current condition. Well, as the patient's condition changes, right, we have to revisit that consent to make sure that they understand this is the condition that you're in now. These are now the options available to you, right? These are the risks and the benefits and the consequences of accepting or not accepting them. And the family really appreciated that because it gave them an understanding of the why. This is why we're talking to you about this. We will respect your decision, but we wanna make sure that you really understand. And that helped us build a lot of trust with the family because it allowed them to step back and realize that we were there accompanying them, right? We were walking alongside them as they made this decision. The family asked us to look into blood product alternatives. The medical team exhausted all avenues of possible blood alternatives. There was a company, I don't remember what the company was at the time that had a possible alternative that hadn't been approved, but some people had reported some success with the family asked us to call them. I remember making a phone call and finally getting someone on the other end of the line from this company and I said, "Look, do you use this anywhere? Do you have any of this? Are you willing to do like a compassionate use?" Just something, anything. And the person I had in the phone never forget this said, "Mam, I'm sitting in an empty office surrounded by boxes. Like that's all that's left of our company." And I was like, "Oh, okay, right?" So there were no other options in this situation. - And this is important, I think, because, and again, not being from this community and not knowing the community's belief system in any type of detail, but having worked with patients and families from the community, it's my understanding that whole blood transfusions are kind of off the table. That's not something that the church, I don't know how to say that, like the church wouldn't condone that type of thing, but there are other derivations of blood and other types of products that use parts or plasmas at elements of blood that, like you said, are matters of conscience that the patient or the family can consent to without violating their religious obligations. But this is really fascinating because this religious belief has in some ways pushed forward the technology or the products that have become available or even the procedures that are available. So I remember when I was back in California doing my training, I was talking to a cardiologist who said that they've developed a bloodless transplant protocol. Where they're actually transplanting a heart, but they're using either blood alternatives or products and they're able to successfully do it, not just in order to serve this community, but also to be able to do it for other people as well. So really interesting how this religious view is kind of pushing forward the envelope of medicine in some important ways. - Yeah, really driving innovation. It's not just, I mean, I think some, my guess is a lot of people you were working with at the time just found this to be, I don't wanna say a poor it, but I've worked with medical professionals who are, they just don't understand, like even if they technically understand, they just think it's selfish or it's nonsensical or that they just can't abide it. The fact that you went out of your way to try to accommodate it, I mean, is I think the best that you can possibly do, but my guess is that you felt a lot of sort of judgment from some of the healthcare professionals. She probably wasn't wrong that she had been, I don't know if persecuted's the right word, but had certainly been judged for beliefs that were not sort of in keeping with what medicine things are. - Absolutely, and we were hearing some of those things from the care team, right? Conversations, you'd hear little bits of pieces. I can't believe how selfish this woman is that she'll leave her children without a mother just to follow her religious beliefs and then others were saying, well, you know, look, she just had a baby, there's a lot of hormones going on. Maybe this really isn't a rational decision. Jesus terrible. You know. And so, you know, on the one hand, you understood why they were having that reaction. On the other hand, it was frustrating because, clearly, this is something that was very sincerely held. And it was certainly coloring the interactions of the team with the patient, with her family. And even if nothing was being said in front of the patient or the family, I mean, we all have been in situations where the patient and the family feel judged just because they can sense it. It's not silly what we do. It's what we don't do. It's what we don't say. And so, that was really concerning for everyone. Conversations continued with the patient, with her family, the patient's mother was imploring her. Just do this for the children. We recognize we're witnesses as well, but just do this for the children. As time goes on, we learn that the patient has signed a power of attorney that was provided by the Jehovah's Witnesses Liaisons. And it was presented to her without her husband present. And she named her husband as her agent under this power of attorney. And the power of attorney has very specific limits to the powers of the agent. It says, quote, I give no one including my agent, any authority to disregard or override my instructions. And the document notes that she refuses whole blood, red cells, white cells, platelets, or plasma. Now, I don't know if this is the current document that's used. It was the document that was presented at the time as being from the church. And the patient did sign it. Now, the patient's husband, of course, is very actively involved in this case. And he's giving us articles that he's been given that explain what she can accept, what they can't accept. And he gives this narrative of church members, so not the liaison, right? They've left. But church members that presented this form, and I'm sorry, it was the church members that gave the form. I hope I didn't say liaison before. And he comes back to the wife has signed this. And he starts to question, right? Was she coerced by the church, by the members of the church? Right? We all know that that one person is not a representative of an entire organization and entire faith tradition, anything like that. But then narratives started coming out from him and from others that they had seen these people, you know, looking at the medicines in the room, checking out what was hanging on the IV polls, going through the trash to see what had been administered. Really some unusual activities for a visitor to a patient, I would say. And, you know, he understood and we understood that the risk if she accepted something that she wasn't supposed to, was shunning by the church and also potentially shunning by their very family. And of course, each family, you know, addresses this differently. Each, each Joah was witness organization addresses this differently. I've since this case, I've talked with people who say that some people recognize this is a decision that someone makes under duress and in a moment of weakness from which they can grow spiritually and learn and amend their ways. But lots of concerns there. You know, the narrative from the patient and the husband, we started talking about the POA and it became clear in speaking with her that, you know, the decision she was making and her understandings, her understanding was not consistent with the document she had signed. And yet the document says, I specifically say that my agent can't go against this, but yet she herself had gone against it. It wasn't an accurate representation of her wishes as she was narrating them, you know, in real time. So just a go ahead. So forget it. Yeah, sorry. Forget it. So the, so I first want to ask, is this a legal document? Because in some states, you have to use the state form in order for it to be considered a legal document. And this obviously wouldn't be because it's so specific. At the same time, you know, even if I live, like I live in a state where you have to use the state form, I would still take it as authoritative, even if I wouldn't take it as a legal document. However, this is so complicated because she's clearly doing something. She's making decisions going against the very document she just signed. She still has capacity. Obviously the document isn't in effect yet. But if she loses capacity, are we suddenly going to disregard all of her more contemporary wishes in service of a document where afraid was coerced or manipulated to begin with? We got to address that right now. I'm like, absolutely. And there's some people who will say, and obviously this situation is very unusual, but there are some people who will say, you know, look, when the person filled out this document, right, not so not in this setting, you know, maybe they did some advanced care planning, they filled out the document. They'll say, well, look, you know, when they had time to really think about this, when they weren't under duress, these are their wishes. And you know, now they're kind of under duress. And that becomes the $25 million question, or literally sometimes the life or death question. We had a situation like this where a husband had signed a Jehovah's Witness Power of Attorney form. And the husband's and the husband lost capacity, not the husband was communicating, but didn't, wasn't felt to have decisional capacity for the specific decision at hand. And in that situation, the patient's wife was making the decisions because she was the one named on the form. And the patient's son said, no, no, he hasn't been a practicing member of that organization for over a decade. And I know for a fact that he just signed that so that she would stop asking him to. Right. And that was, that was a real conundrum as well. Luckily, in that case, he regained capacity and revoked that document. And you know, everyone breathed a sigh of relief. But, you know, so we know that there are questions. And at the same time, we don't want to take these documents lightly because that's why we have them, so that we can respect the wishes of our patients and not do things to them that they don't want. So we knew, right, this is something we have to address. Right. We can't wait for this. And so the team, you know, not a large team, but a number of us went in and said, look, this is what this document that you signed says, this is what it means. These are the decisions that your husband will or will not be able to make. And there was sort of this this moment of, oh, well, that that's not what I want. Right. And so we, we presented a state of Illinois document and we, whether or not it's a legal document, right. Like you said, that's a very specific question. Illinois does have a provision in the law. And I don't remember the exact wording, but it says something to the effect of a document that meets the requirements of this act, you know, generally speaking. And it would be things like, you know, signatures, witnesses, giving powers, that sort of thing. So it would have been a, like you said, would have been accepted. And so what we did was we presented the state of Illinois form and then we explained how she could fill it out in order to meet what she was narrating to us. And we, you know, she's going to leave this with you and let you decide, you know, let you think about this. And, and where you want to go then. So I don't remember if she actually invalidated the other one at that moment or not. So that's the one from the Jehovah's Witness. Yeah, I just don't, I just don't remember. And do you know what it takes to, so I know what it takes in Texas, but what is it in Illinois? What does it take to invalidate it? So in Illinois, you can verbally invalidate it. You can invalidate it by destroying it, including tearing it up, burning it, shredding it, any number of things. I could destroy it in any manner of ways, any manner of ways, you can revoke it even if you lack decisional capacity. And that's there for the protection of the patient and the agent and that sort of thing. That actually aligns with kind of the legal framework for like if you have a will, like a testman will and you like symbolically tear it in half, like that's a legal revocation of that in most states, obviously it's state by state, but right. Exactly. You know, we always, we always say if there's a pile of papers and the patient is agitated and they grab the papers and they rip them in half and they're happened to be a power of attorney, they're like, well, that's not really an invalidation. They didn't know it was there, you know, like pile of papers. But you know, actually, we actually recommend that they not be destroyed as best practice because copies of the document are valid. So unless you have a way to prove at any moment when somebody shows up with an old copy of the document or the document that's been invalidated, that it was in fact invalidated, you basically have a valid document, right. And it's if you're not on the same EMR, if you're, you know, in a different state, that sort of thing. You may have no evidence that it was revoked. So you should write revoked on top of it in red letters and then scan it. We send it to all your friends. That's right. Send it all you put on your forehead. We do scan in revoked documents for that very reason so that we can go back and show no it was revoked. And we recommend that the patient initial it and time it and date it, whether or not that actually happens is a matter of who's doing the revocation. So yeah, so really a lot of really interesting things here because we started to think as ethicists. What is our role here? Are we responsible for disabusing this patient and her husband and her family of what very clearly seems to be an erroneous understanding of something here that's written in black and white? We're not Jehovah's Witnesses ourselves. We're not some of us are theologians by training, but in the role as ethicist, you're in a very particular role. We started doing more research and we learned as with any faith tradition that different members of the faith practice and adhere to the tenants of the faith in different ways. Some adhere very strictly. Others adhere to certain parts and not others. And we learned that there are actually groups within the Jehovah Witness tradition who are working to change teachings on what blood products can be accepted and what can't and that sort of thing. That was really educational for all of us because I think a lot of times when you get education about this, whether it's in medical school or in your residency or in graduate school, whatever, there's usually it's a fairly high level. Persons who are Jehovah's Witnesses don't accept blood or blood products, there are some nuances to this. And that's generally that's it. And so it was really enlightening to us just as we went through to learn all of these different things. The other thing that this case really emphasized to us is really the importance of patient confidentiality. The possibility that we might have to do things that we normally wouldn't do in order to protect a patient's privacy and confidentiality. So you think about the church members who are in the room going through the trash cans. Let's say the patient had chosen to accept something that was either a matter of conscience or just absolutely prescribed in the tradition. If we had disposed of an IV bag or something like that in the trash that clearly had one of those products in it, it was red, had the patient's name on it, then the patient's privacy would be violated. You might have a patient who wants to accept something but doesn't want their spouse to know that they've accepted something. So there are times when you might even have to move the patient to another area to administer something. There could be various things. And I'm certainly not suggesting falsifying documentation or anything like that, but there are steps that we may have to take to assure the patient that their privacy and their confidentiality is going to be respected. And that's something when we're in these situations, we always do as we always make sure we speak privately to the patient. If we're in a situation where it's a pediatric patient and there's the two parents will speak separately to the two parents just to say, we want to assure you that whatever decision that you make will be kept confidential. We're not going to reveal that. We'll do what we need to do to protect your confidentiality. And I think they really appreciate that because it shows a respect both for their tradition and for their decision as human persons. We recognize the significant stakes or the things that are at stake here. Because if you think about someone who's facing death knows that they could possibly be leaving children without a parent or someone who's child could die. And then you're talking about a faith tradition, which strikes at the very core of who we are as human persons. Not just here on earth, but for most faith traditions, there are further implications as well. So just a lot of different things to think about. Beyond the will this person want this person except x, y, or z, and does this fit within their definition? And like I said, a lot of soul searching of what's our role here? Right? You know, they're saying we choose x because it's allowed and we have a document that says x is not allowed. Is that our job to point that out to them? Yes. Or not? I don't, I mean, I feel you. As I'm hearing this story, I'm also thinking it absolutely. I mean, I've been in situations in which the person professes that their faith tells them x, y, and z. And then I talk to a member of their church or their own pastor or priest and they tell me that's not even at all with the faith demands of them. And then that's very, you know, and then I feel an obligation to like put that faith leader in front of that patient. But if it were up to me to articulate it, that would have put me in a really difficult position because I really want to respect people's religious beliefs, but I also really don't want young mothers to die. Right? So the stakes are like you're saying incredibly high. I also think, and I wonder what you think about this Tyler? Like, if it had just been a philosophical belief about something that somebody held dear, I think I'd have no issue sort of trying to convince them that they weren't right about it. But something about a faith belief almost seems a little bit more untouchable. Like, like it's, it's more disrespectful to kind of, and I would never want to argue against someone's own theology unless I felt like they were getting their own, like belief system wrong. That sounds so harsh. I'm struggling to even articulate like why that tension exists. Yeah, I think what's interesting is that we, like you said, if it's a kind of a personal belief for philosophical belief, it's almost, I don't know, it feels like sport kind of to like poke holes and and and think about the internal consistencies and you know, kind of have some have kind of a probing conversation about that, particularly if the belief is kind of an outside of the mainstream of like scientific understanding, right? So if they, if somebody comes and has a a view about vaccination, for example, that's based upon a miss like a fundamental misunderstanding of science, like we do that all the time is where we try to educate them to the point where they can make a different decision. But I agree with you, Devon, that it's when it's religious beliefs, it feels maybe more fraught, more more dangerous in some ways to start poking holes in religious beliefs in a way that that is different. So I don't know, it's I personally, if somebody asserts a religious belief that has implications for healthcare decisions, I'm really reluctant to get into the nitty-gritty about that. So, so we're gonna what happened? You gonna mean you gotta, you gotta sort of fill out the rest of the story for us. So, you know, a lot of soul searching, right? A lot of a lot of conversations, especially among among the ethics people, right? Of, you know, well, what can you say? What can't you say? Well, what, what is your role? What isn't your role? And exactly some of the things that you're thinking of and, and you know, then it was like, well, so yes, it's a religious belief, but they're factually incorrect, right? So do we just say, this is X, you're saying why? And just sort of stand there. So, so what happened, right? A lot of praying, a lot of a lot of deep breathing, a lot of conversations with this patient, with this family. We had palliative care involved because we knew that if we knew that if she continued to decline and continued on this course that we were going to be, I mean, not that we weren't already in an end of life situation, but, you know, we were going to be in actual, you know, in the throws of death itself. So, lots and lots of conversations, lots of conversations about the article, conversations with the team, you know, just everyone beside themselves, including the patient and her husband, right? It wasn't just the team that was suffering moral distress, the patient and her husband were as well. You know, we had the patients other child come in and visit because the patients husband recognized that that would be important both for the mom and for the child. So we reached a point where the patient and the husband decide that they're going to wait until morning to see if her hemoglobin goes up at all. And if it has, they're not going to accept the blood products. They understand that the patient may risk death by waiting. There's this sort of unspoken, if it hasn't gone up, right? What they're going to choose. They don't say definitively, but they leave that door, that possibility open. So everyone goes home, tries to sleep. And of course, there's that moment the next morning where you open up the chart to see, is this patient here? Is this patient disappeared from my list? Why did they disappear from my list? Did they die? What happened? Well, the patients hemoglobin increased. And the medical team was mystified. A miracle. It's a miracle, right? I mean, there was this very real sense that this situation had worked itself out in a way that was really, in many ways, nothing short of miraculous. I'm not that there couldn't have been some clinical explanation, right? But this was not where the team thought this was going to go, right? When the husband's like, well, we've decided we're gonna wait until morning and see what happened, right? Everybody kind of was like, oh, that's, hmm. That's kind of risky. I don't really really want to do this. I mean, we're not improving. We haven't improved up to this point. Like what makes you think that between 6 p.m. and 7 a.m. something is going to happen? Yeah, and everybody just sort of took a deep breath. And there was literally literally, literally, that sense of, oh, thank God. They didn't have to make that decision. They certainly had a lot of other decisions to make about what had happened and their beliefs and their future with that faith community. But they were probably more relieved than we were, of course, that she did well. She didn't have to make. And we never saw her again. She was from out of the area. I don't remember how she ended up up here with us. Do you wonder, I've heard I had a friend say to me once that something similar happened and it emboldened the Jehovah's Witness community to encourage more members to not accept blood products because of this miracle. And that if they just, this was a test case and that it made it actually more difficult to talk about these things with future Jehovah's Witnesses in that same church because they had all heard the story. And maybe since she was out of town, that's not as much of an issue, but I don't know. - I mean, I think it's certainly something to take into consideration, right? See, they were faithful. God provided. We've, of course, also seen bad outcomes, right? Where someone is faithful, or what we would define is a bad outcome, right? Someone's faithful and they die for that belief. I don't suspect that that happened in this case. Like you said, they weren't from the area. I'm not certain that they went back to that church. I'm not certain that the patient's parents went back to their community either. I mean, it was certainly a moment of some real soul searching for them and the consequences of their beliefs, right? I mean, I think no matter your faith tradition, when you start seeing consequences of your beliefs that aren't just theoretical or aren't just, it's the word. Can't think of the right word here. - Or hypothetical. Or hypothetical. - What's that? - Theoretical or hypothetical, right? It's easy to-- - Theoretical hypothetical. - You believe in something until it really, you're gonna die over it. - Right. Right, when there really is this sort of, it's truly a life and death decision, right? It's not that hypothetical. So I don't know where that ended up. We were told that the patient filled out the power of attorney, the Illinois one. We were never given it to put into the patient's medical record despite numerous requests. It's a real learning experience for everyone. - It didn't have kind of a nice, tidy resolution, but it had a happy resolution. - It had a happy resolution. And it certainly, and like I said, this was well over a decade ago. It certainly changed how we approach members of this faith tradition. We sense then, the persons that came as liaisons, I don't know if they were from out of town. I've never seen them again. We've had meetings with our local liaisons who are well informed, extraordinarily well versed. You know, have lots of resource materials that these liaisons, in this case, did not. They did not have. And I don't know if that's just because of the passage of time and more things that have developed, Tyler, you mentioned that the bloodless transplant, things like that. But we want to have good relationships, not only with our patients and their families, but people that they're going to call upon as a resource. And it was also just a good reminder of how, making an assumption about who a family does and doesn't want involved, could really have drastic consequences. And we're always working to protect our patients, privacy and confidentiality. But it taught us the importance of thinking outside of the box and reassuring patients and families privately. This is your decision. We're not going to tell someone what you chose to do or not do and we'll take the steps necessary for that to happen. Well, thanks for getting this was a really interesting case that you brought to us. [INAUDIBLE] Well, thank you. It's like I said, I still think about it. [MUSIC PLAYING] Thanks for listening to this episode of Bioethics for the People. For more information about the podcasts and your wonderful hosts, please visit us at bioethicsforthepeople.com. And special thanks to Darian Goldenstahl for all the podcast related artwork, Christopher Wright for Composing and Recording all the music you've heard here, and Cameron Swazie for Audio Engineering Support. [MUSIC PLAYING]