2024 National Paediatric Bioethics Conference: Disentangling perspectives

Welcome to Essential Ethics, and this podcast from the 2024 National Pediatric Bioethics Conference, unified by the theme, the cases we carry, navigating ethical complexity in pediatrics. I am your podcast host, Professor John Massey, Clinical Director of the Royal Children's Hospital Children's Bioethics Centre. The 2024 Conference was an exploration of the ethical complexity involved in delivering health care for children, and the moral residue it can leave with us, sometimes for years. These are the cases we carry. This podcast is a recording of the opening plenary of the 2024 Conference. The speaker is Dr. Georgina Morley, a nurse ethicist from the Centre for Bioethics at the Cleveland Clinic, Ohio. Georgina is a world expert in moral distress and has developed a schema for understanding different types of moral distress. In response to the common problem of moral distress, Georgina has led a structured program for training clinicians and ethicists in conducting moral debrief sessions with clinical staff. Join me as Georgina Morley delivers her keynote address, disentangling perspectives, moral distress and moral compromise. Thank you. All right, so today I'm going to be talking about moral distress, something that I talk about, ad nauseam, and yet it continues to interest me in different ways. And I'm going to be talking about also this idea of moral compromise. So I'm hoping to be able to kind of like, there'll be probably a little bit of a few areas that are maybe a little bit provocative, but hopefully get you kind of thinking about these concepts and coming up with some ideas that you'll be carrying with you through for the rest of the conference as well. So these are going to be our learning objectives, so describing the subcategories of moral distress, identifying ways in which the narrow conception of moral distress can contribute to values in position, and then recognizing the role of moral compromise in mitigating moral distress. So what you'll see is that I've gone with this quite loose kind of visual metaphor of disentangling hair to illustrate kind of the disentangling perspectives. So I'm starting here with Medusa, and this is going to be the kind of root of my disentangling. So I'm going to first provide an introduction to the concept of moral distress, and then briefly touch upon moral compromise, and how I think these concepts can be connected. Then I'm going to use a case study to draw out and kind of specify the subcategories of moral distress. I'm going to provide some examples of the subcategories of moral distress. And then I'm going to argue that I think that this kind of approach to moral distress, with this kind of broader approach, but then with these kind of refined and nuanced subcategories, actually can open up new possibilities for understanding each other, and it also provides some new possibilities to help ethicists, and also clinicians to identify some steps to facilitate moral compromise, which I think can help to bring us together as a moral community. Then I'm going to close the session out with some key takeaways and hopefully generate some ideas that you can take with you. So I'm going to start with the concept of moral distress. So moral distress was first introduced to the nursing literature by Andrew J. Meton. So Andrew J. Meton was an American philosopher, and he spent some time with nurses. And after hearing about some of the experiences that they had had, he described moral distress in this kind of very short section of his book that he wrote about ethical issues in nursing practice. And he stated that moral distress occurs when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action. So really core to J. Meton's definition is knowledge of the right action and an institutional constraint. So the example that he actually provided in his book was of nurses who were being told that they had to take blood samples, like blood draws, from all patients that came into the hospital. So whether or not it was clinically indicated, that was something that they had to do because it made money for the hospital. So really what he was doing was that he was highlighting kind of the increasingly kind of bureaucratic systems that hospitals were becoming. And he also stated that moral distress is distinct from moral dilemmas, which occur when two or more moral principles apply, but they support mutually inconsistent courses of action, and then distinct again from moral uncertainty, which arises when one is unsure what moral principles or values apply, or even what the moral problem is. So according to J. Meton, moral distress was this quite narrow kind of concept and that it only occurred when the individual knew the right thing to do, or knows the right thing to do, but is being institutionally constrained in some way. But we also kind of discovered that there were actually lots of different conceptualizations of moral distress. So since that time that J. Meton talked about it in 1984, there was all of this kind of research and this discussion that was done within kind of like more frequently within kind of the nursing literature. And actually what we can see is that over time the conceptualizations of moral distress changed. So noticing this, one of the first kind of components of my doctoral work was conducting this narrative synthesis of the literature. So we looked at all of the empirical and all of the conceptual papers that captured and described moral distress, and we pulled out those different definitions, those different descriptions of moral distress. And we identified 20 different definitions, and they all had kind of different necessary and sufficient conditions. So all of these different conditions that were kind of like wrapped up in the definition of moral distress that were required for moral distress to occur. So I just want to highlight just a couple of those. So within these different definitions, there were these different conditions. So some of the authors that we're talking about moral distress were talking about a moral judgment that had taken place, that the individual that was experiencing distress had made this moral judgment about the right thing to do. Others talked about a moral decision, and others talked about a moral awareness. So these kind of, you know, they actually contain these different kinds of knowledge claims. So they're saying that the morally distressed individuals, some are saying they have to know with certainty the right thing, whereas other morally distressed individuals might just be morally aware that there's something going on. Some of the authors talked about these institutional constraints, which others kind of just labeled external constraints, and then all of a sudden there were these internal constraints that also appeared that seemed to be causing moral distress for people. So often they talked about things like kind of lack of confidence, or, you know, this sense of not being able to work through this challenge. And then some of the authors kind of specifically highlighted psychological distress, which was kind of variously called psychological suffering, and then also physiological suffering as well. So all of these kind of symptoms that were being described within the literature that the morally distressed individual was experiencing. And then finally, and I actually think kind of most controversially in my mind anyway, authors also introduced this idea of compromised moral integrity. So this is an example of one of those definitions of moral distress. So in this definition, Anne Hammerick and Lucia Wohschel in 2014, they suggested that moral distress occurs when an individual's moral integrity is seriously compromised, either because one feels unable to act in accordance with core values and obligations, or attempted actions failed to achieve the desired outcome. So they're saying that moral distress arises when an individual's moral integrity is seriously compromised. And then in 2008, the Canadian Nurses Association stated that moral distress occurs when an individual's values are compromised. They state ethical or moral distress arises in situations when nurses know or believe they know the right thing to do, but for various reasons, including fear or circumstances beyond their control, they do not or cannot take the right action or prevent a particular harm. So when values and commitments are compromised in this way, nurses' identity and integrity as moral agents are affected as they feel moral distress. So again, what we see is this alignment of moral distress. o'r mawr o'r kompromau'r, but in this kind of very negative framing. So this idea that the morally distressed individual is being unfairly or unjustly constrained and therefore compromised as a person. But this is actually the framing of moral compromise that I would like to encourage you to consider. So Jonathan Ive states, embracing compromise requires us to accept that the world is messy with messy problems and necessarily messy solutions. So rather than thinking about moral compromise as a bad thing, as something that is damaging to you personally as a healthcare professional, I'd like you to consider compromise as a morally good thing, as something that we ought to be striving for in the ethical challenges that we encounter, so that when we encounter those strong emotions and that distress in the work that we do, we can pause, we can take a moment to consider other perspectives and how we might meet others in the middle of this extremely messy work. So I'm not suggesting that moral constraint distress does not occur. I think there are lots of situations that occur when an individual has identified that ethically supportable or just ethically justified pathway and they're being constrained in some way. So an example that I often think about and something that I heard about a lot during the pandemic, I think there were times when it was justified for us to be restricting visitation, but there were other times when it was less justifiable or even wrong, but the policies that we were working with couldn't keep up with the data, and so I think for many this created moral constraint distress because you felt this kind of, you know, this strong obligation or responsibility to facilitate visitation but then couldn't. But what I am suggesting, maybe unfortunately, is that Jameson's narrow definition of moral distress actually only captures one subcategory of moral distress and that's moral constraint distress. And what I hope to highlight is that if we only think about moral distress in these narrow terms, we're actually risking a few things. So I think the first thing is that moral constraint distress is often associated with anger and frustration, which has this kind of narrowing effect and it can diminish our ability to engage in and listen to others' perspectives. And this kind of creates a threat to our ability to actually engage in moral compromise, and then I think can be a threat to our ability to develop moral communities within the work that we do. Other subcategories of moral distress, such as moral uncertainty distress, actually have these other associated feelings of kind of being torn or being puzzled about the correct moral pathway. And I think that that kind of framing can actually open us up to different moral possibilities. And so it can orient us more to considering moral compromise, which I think can then help us to come together in trying to work through and identify what the correct pathway is, which can help us actually develop and nurture our moral communities. Moral constraint distress also risks values in position by which I think we can risk imposing our own values on others. So Megan Jane Johnston, who's an Australian nurse philosopher, who's done some amazing work in this field. One of the things that she states is, "Linchpin to the Theory of Moral Distress" is the idea that nurses know what is right, what is the right thing to do, but unable to carry it out. And you can apply that to any healthcare professional, not just nurses. However, this assumes, without supporting evidence, the unequivocal correctness and justification of nurses' moral judgments in a given situation. So it's this idea that moral constraint distress assumes that the morally distressed individual is correct and justified in their moral perspective, which I would argue actually means that we can risk disempowering healthcare professionals if we only focus on that subtype or that subcategory of moral distress. Because what we're actually doing is holding them back from the ability to engage in moral dialogue and ethical analysis. I also believe that we should reconsider concepts when we are provided with evidence that suggests they need to be altered or refined. So in our empirical work, we have found evidence that indicates there are other morally relevant causes of distress. And these make up, or I would argue, these make up the different subcategories of moral distress. So the first subcategory being moral constraint distress, the idea that you've identified the ethically supportable pathway, but you're constrained in some way, and that can result in a perception that you've committed a moral wrong. The next is moral tension distress. This is the distress that occurs when an individual feels kind of unable to articulate their beliefs or their perspective. That might be because they just feel like they don't have the language to name the values that are at stake, or it could be because they work in an unhealthy team environment, and they're not welcome to share their moral perspective. And this can result in that kind of feeling of holding that tension inside. An example that I often provide is thinking about, you know, your first experience of seeing a patient restrained for the first time. If you don't understand the reason and the rationale for that patient being restrained, that can create this moral tension inside. The third is moral conflict distress, which is the distress that arises when you're actually engaged in conflict. So an example might be a conflict between the team and the parents about disclosure of a diagnosis, or about the plan of care. Moral uncertainty distress occurs when an individual is uncertain about the right thing to do. So an example of that would be making a decision about whether to withdraw life-sustaining treatment for a patient who has an uncertain prognosis, perhaps an uncertain neurological prognosis, which is resulting in all of this uncertainty about what that future quality of life could look like and what that level of disability could look like. And then lastly, moral dilemma distress. This is the distress that arises when we feel genuinely torn stuck between a rock and a hard place and whichever option we choose, it feels like there is a moral wrong. So an example could be the distress associated with caring for an adolescent whose parents have consented to dialysis treatment, but then that adolescent is suddenly voicing that they don't want to continue with that life-sustaining treatment. It might well be ethically justifiable to provide that treatment whilst the kind of goals and the plan of care is clarified, but that can still result in this moral loss because of the dignity and the kind of bodily harm and violation that can occur to that individual as you provide that life-sustaining treatment, but also recognising that without that person would die. So in either option there is a real moral loss. There's also kind of growing evidence and support for these subcategories of moral distress because other scholars are now identifying these types as well. So Blanchard et al, they interviewed emergency health care workers during the pandemic and they identified all five subcategories in their data. Winer et al, surveyed US pediatric palliative care providers during the pandemic and they described moral uncertainty and moral constraint distress. And then a paper that is currently impressed from the Royal Children's Hospital by looting et al, described a case study that centred around the experience of the team's moral uncertainty distress. So what we're seeing as other authors are really kind of beginning to notice and identify these different subcategories of moral distress in clinical practice as well. So I'm going to work from the foundation of moral distress understood as these subcategories and I'm going to present a case which of course I've altered in significant ways to maintain confidentiality for which I was the nurse ethicist or the clinical ethics consultant. I'm going to disentangle the different perspectives and highlight how I interpret their expressions of moral distress. And I'm going to show how this approach can help us to create new possibilities for understanding one another when we encounter ethically complex and morally distressing patient cases. And how this can help us to identify steps to facilitate moral compromise which I think can bring us together as a moral community. Okay so this is the case of Francis. So Francis is two month old born with hyperplastic left heart syndrome and underwent a norwood procedure. So I'm sure there's people in the room that can explain this much better than I but a surgery to treat a continental heart's defect that's usually kind of the first surgery of a series of surgeries. So coming out of the operating room, Francis experienced cardiac arrest and was later emergent and was emergently placed on VA ECMO. And it was later determined that o'r cadu acorest o gyda'r meddwl i'r ymyddiadau. So just a very quick primer on ECMO for those who might not be familiar with ECMO. ECMO is a machine that auctionates blood outside of the body. It can be used as total cardiopulmonary support, so VA ECMO or just pulmonary support, so VV ECMO. So Francis is requiring that full total cardiopulmonary support. ECMO therapy has a few goals. So to stabilize systemic hemodynamics, to enhance systemic oxygen delivery, to minimise or even completely remove mechanical ventilation, and then in Francis's case, and where it can get a little bit blurry sometimes, is to allow time to determine the plan of care and to hopefully provide a bridge to recovery, transplant or a permanent device such as a VAD. So the ECMO circuit consists of a pump, which pushes blood through the oxygenator into the patient, large bore access and return canulars, and then the oxygenator, which adds in oxygen and removes CO2. And because the blood is being circulated through the oxygenator, thrombosis can occur, which requires oxygenator exchanges, and it also means the ECMO carries some significant risks, so risks of clotting, bleeding, stroke, lymaskemia. So it is a fairly high-risk life-sustaining treatment, and of course patients that are sustained on ECMO are critically ill. So Francis has been on VV ECMO for four weeks as a bridge to decision, meaning that it's not yet entirely clear where the Francis can be a transplant candidate. Some members of the healthcare team are beginning to question the plan of care, and an ethics consult is placed by the palliative medicine team with the question, is it ethically supportable to initiate a do-not-escalate plan of care? So essentially to not add in any additional kinds of therapies to put a cap on antibiotics, ionotropes, and those kinds of things. So the first step in the ethics consultation process, and obviously bearing in mind that I'm coming at this from a US model, so this is a single consultant facilitation approach. So we have a team of 10 professional ethicists at the clinic, and we are responsible for responding to all of the ethics consults. We switch round, and whoever is on call for that week is it for all of those consults in that particular area. So our goal, I think similarly to here, is to really understand the ethical question. Then we will elicit stakeholder views and perspectives to provide an ethical recommendation that is supported by ethical analysis and also informed by and abides with local policies and laws. So with this case, the question that the consultant asked was, is it ethically supportable to initiate a do-not-escalate plan of care? So the next step is for us to begin information gathering, and I talk about information gathering rather than fact gathering, because I think there are few facts in clinical care. I think there are usually medical judgments, opinions, or information given the best available data, but actually a few facts. And then the next step will be that we will promote discussion between stakeholders. This may or may not include meeting with the patient and the family, and then finally we document our recommendation in the electronic medical record as well. So having received intake from the palliative medicine team, and I'm going to condense this case, obviously, because we don't have several days to be going through this. But having received intake, my next step was to go to the bedside, and there I was able to speak to the nurse caring for Francis and the APRN, the nurse practitioner overseeing the unit. And what I hear from the nurse, Nurse Jamal, is that he does not think that Francis' parents trust the medical team and doesn't think that they have realistic expectations. He's seen many other infants die after weeks of suffering on ECMO and struggles to see why or how it could be a different outcome for Francis. He seems to be indicating that he knows that Francis will never be a transplant candidate. And then the APRN, the nurse practitioner, weighs in and says that members of the medical team have said that if anything happens with the ECMO circuit to just move slowly and they will call Francis' parents. So what are we hearing? So one of the things that I'm hearing is a belief, perhaps a moral judgment that Francis is going to die, that Francis is going to suffer for weeks on ECMO and die. She isn't going to get the to the point of even being eligible to be listed for an organ, nevermind to the point of receiving an organ. Jamal seems to be bringing beliefs or perspectives about previous patients that they have cared for to the case, stating that we've seen this before and then ultimately questioning what are we doing. What I'm also hearing is moral constraint distress. I'm hearing Jamal expressing a belief that continuing to provide life-sustaining treatments doesn't make sense. That he's seen this before and he's questioning the point of continuing. Of course, we don't yet know the strength of his belief, but we might be able to get to some of that, I think, by paying attention to the emotions that he's expressing. So I ask some more questions and he expresses, Jamal expresses some anger, some frustration and states. They do this all the time, they aren't realistic with parents, and it is the baby that suffers. So I'd say that since some of this initial questioning has resulted in Jamal becoming increasingly angry and frustrated about the situation, that potentially his view is quite fixed. He has a fairly strong belief that the treatment's being provided to Francis are wrong. So whilst I'm talking to Francis, the resident comes over. And they say, "I agree with Jamal. The chance of Francis getting an organ is so minimal, we should just be focusing on her comfort. This isn't what I would do for my child." So I want you to just reflect upon how often you hear comments like this, and then also how often you feel like that in the care that you're providing as well. I think that there are definitely times that I feel as a nurse ethicist that someone is making a choice that I wouldn't make for myself or for my family. And again, I would say what we're hearing from Marie is also some moral constraint distress. So a sense that the life-sustaining treatment's being provided to Francis are wrong and a moral belief that we should be shifting to comfort care or at least a more comfort-oriented plan of care. So the question is what next? So I would say that an appropriate response always in these situations is to validate the emotional response that the individual is expressing. But that doesn't necessitate validating their moral perspectives or their moral beliefs. But what can then be quite challenging is when or how to question or probe those moral perspectives or beliefs. Because we obviously don't want to invalidate that emotion that's being expressed. So at this point in the case, I actually don't have enough information to yet know whether Jamal or Marie are ethically justified in their perspectives. And in fact, since the palliative care team are inquiring about whether it's ethically supportable to move forward with a do-not-escalate plan of care, I'm beginning to think that perhaps the ongoing provision of ECMO might be considered non-beneficial. But importantly, I'm not yet jumping to any conclusions because there's still key stakeholders that I need to speak to in this consult. But before I move on to the next step in the case, what I do want to highlight in Marie's expression of moral constraint distress and maybe to some extent in Jamal's is some values in position. So this was an issue that again was raised by Megan Jane Johnston in a seminal paper in 2015 around describing moral distress. And Megan Jane Johnston and Hutchinson actually they argued that the concept of moral distress should be completely abandoned from the nursing literature. And they argued that moral distress risks moral imposition whereby nurses or other healthcare professionals impose their views onto others in ways that are unwelcome and morally risky. An example of this can be found in multicultural healthcare contexts where nurses act as self-appointed defenders of patient autonomy and impose the principle of autonomy and other values in culturally inappropriate and morally harmful ways. So Marie is explicitly stating this isn't what I would do for my child. With Jamal I think it's actually slightly less clear if he's imposing his own law. ond ffordd yn ffordd yn ffordd ar y ffordd y ffordd yn ffordd yn ffordd yn ffordd yn ffordd yn i ddim yn gwaith ymwch ymwch ymwch ymwch ymwch ymwch ymwch ymwch ymwch ymwch ymwch ymwch ymwch ymwch ymwch ymwch ymwch i hynny. Mae'n gallu hynny, mae'n gallu hynny, mae'n gallu hynny, mae'n gallu hynny, mae'n gallu hynny, mae'n gallu hyn Mae'n dwi'r unrhyw i ddiwedd i'r unrhyw i ddiwedd i'r i'r unrhyw i'r unrhyw i'r unrhyw i'r unrhyw i'r unrhyw i'r unrhyw i'r unrhy Mae'n unrhygiad ac yn ymwyr i'n gwyliad o'r gwyliad yn ymwyr i'n gwyliad ymwyr i'n gwyliad ymwyr i'n gwyliad. So each also indicates the potential for the individual to be assessing the situation based upon their own values and perspective and not from the orientation of the patient or the parent's perspective. So back to our case and our ethics consult. So next I reached out to the cardiologist Dr Zach. Dr Zach provides a summary of what's been going on. He states that Francis is really sick, obvious. However, however he has outlined and explained to Francis' parents that there are clear parameters that need to be met to even list Francis for transplant. And that even then he has made it clear that if Francis is listed she could still die on the wait list. So he's explained the following physiological parameters that need to be met for Francis to even meet criteria for heart transplant listing. So they would need to be able to close the chest which has been done. They need to be able to wean down the oxygenator on the ECMO circuit to show that her lungs are working which they are actually currently weaning the oxygenator. They need to address the liver dysfunction and they also need to be able to come off the continuous renal replacement therapy. Dr Zach is also expressing sadness as he asks are we obligated to do more for Francis because we made this mistake. And he states that Francis' mum has said we are sick of seeing everyone come into her room with puppy dog eyes and that dad has stated you broke her now you will fix her. So we talk through the fact that right now though the chances are very slim there is still a possibility that Francis could get listed and he's communicated this to Francis' parents who he feels strongly do understand the clinical situation. He's clearly communicated the parameters that need to be met to be listed and I also clarified to him that even though the situation was tragic and tragically the result of a mistake this doesn't mean that we should do more than we would do for another similarly situated patient. We discussed the broader plan of care and whether there is any justification any clinical or ethical justifications to place any limitations. I also ask if he knows about this notion that we would move slowly if the pump fails obviously worried about this notion of a slow code. Highlighting that this would be akin to a slow code. Doctors' act states that the message to move slowly if the ECMO pump fails absolutely did not come from his team and he will review that with the ICU team to ensure this clarity. He states that Francis heart is basically in complete cardiac standstill and they do not have any options to reconfigure the ECMO circuit. So while it would make sense to address any pump malfunction there isn't any further cardiopulmonary support that they can offer. Doctors' act thinks that a do not resuscitate would make sense since this would demonstrate to Francis' parents that they are truly at the limit of cardiopulmonary treatments. I ask him about other treatment options. And at this point, since they have successfully closed Francis's chest and they're weaning down the oxygenator he does not think other limits to antibiotics or Ina tropes make sense. But if Francis starts showing signs of clinical deterioration like liver or kidney failure then yes some limits and they do not escalate plan of care might make sense at that point. He says that mum and dad want to continue all treatment with the goal of life prolongation and transplant. So doctors' act is articulating confidence in the plan of care from a clinical standpoint. But then he's also expressing some moral uncertainty and explicitly asking this question about the possible limits given the circumstances of how Francis became so critically ill. Because remember this was in the context of a medical era which has been appropriately disclosed to Francis' parents and the circumstances are being investigated. If doctors' act were to simply ask this question without expressing any kind of distress or emotion then we might just consider this an occurrence of moral uncertainty. But doctors' act seems to be genuinely torn. He's upset because he genuinely isn't sure he's expressing moral uncertainty distress. Similarly if he works pressing feelings of guilt in relation to any responsibility that he might bear for that medication error then I might be thinking and worrying about the experience of second victim phenomenon but that doesn't seem to be the source of his distress either. So the final stakeholder that I speak to is Mia and Peter Francis' parents. So Mia let's me know that at present there are no upcoming decisions that needs to be made that they're trying to take things one step at a time. Mia states that they feel their goals are starting to come together or be it very slowly. That the team have been able to wean down the oxygenator and the goal is to remove this so Francis can orchestrate her own blood and that next they need to address the billy rubin levels to see that Francis' liver isn't inferior. She stated that the end goal is heart transplant. They feel that they're getting all the information needed to make decisions. And they are also relying upon friends who've worked with a nursing to help provide additional context to what they're hearing from the healthcare team. Mia also states that they've opted out of communicating about what they want to do and how Francis might be feeling because she feels that at present Francis is looking around and showing signs that she's fighting to be here. And while she's showing these signs they want to support her. Mia states that while Francis is demonstrating signs of awareness then unless something significant changes or Francis stops interacting they don't want to keep discussing the overall plan of care. So I've now spoken to all of the stakeholders and the next step is to try and promote some discussion between them to reach some agreement about the ethically supportable options which will inform the ethical recommendations on the analysis. So I make a plan to join rounds the next day to promote discussion between the members of the healthcare team. I'm in luck because Jamal and Maria both on shift the next day too. I first asked Dr Zak to share what we had discussed the day before with regards to the clinical parameters required because it seemed, you know, although it seemed from my discussion with Dr Zak that he had shared that information with Francis' parents it seemed that this important information had not yet reached the rest of the clinical team significantly Jamal and Maria. So I let them know also what I've learned from Francis' parents that they do recognize that it's unlikely that Francis will get a transplant but from their perspective as long as Francis is interacting they see this as her fighting. So unless that changes they see as their duty their responsibility to support her and continue fighting for her with these i bod i'n gweithio'r fynd i'n gweithio. Mae'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio. Mae'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio. Mae'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio'r fynd i'n gweithio. If any of those things were to change, then I think it would be reasonable for us to reconsider whether the current treatment plan is in France's best interests. Jamal and Marie might also state that the continuation of aggressive treatment is wrong because Francis will die regardless of this treatment and no one is willing to make a decision to withdraw it. But my question would be how does this help Jamal and Marie to stay fixed in that moral judgement unwilling to engage in moral compromise despite clinical and ethical information to indicate that it's both medically and ethically supportable to continue with life-sustaining treatments? So Richard Hookstable, who is Professor of Medical Ethics and Law at the University of Bristol in the UK, suggests that there are some conditions in which moral compromise is particularly appropriate. He suggests that in moral matters where there is complexity and uncertainty, moral compromise is a commendable aim. He argues that even if compromise means there are moral losses, we cannot simply stay still or stuck in our opposed physicians. We need to identify some way forward for prudent and pragmatic reasons, which then connect to this final condition that I'll mention, which is coexistence. Reasonable people disagree, but we need to find ways to work together to identify a pathway forward that promotes the possibility of benefit and the minimisation of harms. What is also critically important in healthcare is also remembering that we should be oriented to the patient or the family, the parents' values. So when we enact moral agency in our role as healthcare professionals, I think that this is kind of the orientation to moral agency that we should take. So this comes from Amy Millican, and she suggests an action on the behalf of a patient or family resulting from insight into the ethical implications of a situation and the available courses of action, with a willingness to dialogue thoughts and concerns in an interdisciplinary context to achieve what is needed in line with patient and professional goals. So this is really the heart of moral agency, I think, within healthcare. While we might have our own personal beliefs, it's important that we take that time to disentangle our personal beliefs and really identify our professional responsibilities in these complex cases. So in addition to Francis' case meeting those conditions for compromise, I would also suggest that if Jamal and Marie were unwilling to engage in understanding others' perspectives, that this would actually risk further disempowering them, because they wouldn't be exercising perspective taking or ethical analysis. This isn't to say that they need to, like the plan of care that's in place for Francis, that they need to personally agree with the plan of care, but rather they need to demonstrate a willingness to understand the reasons why it's ethically supportable, and why Francis' parents have made the decision to continue with life-sustaining treatments. And I think that even being willing to take this step of acceptance, the stepped towards moral compromise, can mitigate the anger and the frustration that can often be associated with moral constraint distress. And I think it's this willingness to see healthcare as messy with messy problems and messy solutions, it's this embrace of moral compromise that actually has greater potential for coexistence and the growth of moral community within healthcare. So for us to build our moral communities, I think we all need to be willing and able to see others' perspectives. We need to be open to considering and respecting others' values and priorities. We need to make a concerted effort to deconstruct barriers between us to ensure all disciplines are represented with a seat at the table. So even where there's a hierarchy in place for accountability purposes, that doesn't mean that we're dismissive of opinions from individuals who have less power, we need to promote teamwork. And because moral communities are places that literally and figuratively keep moral spaces open, their places where healthcare workers have the ability to come together to discuss the values and beliefs they hold, and how these can come into conflict in the work that we do. We also need time and space for moral dialogue, places where we can come together, identify ways to reconcile differences, to reach compromise and to make changes. And it's really this moral discourse that then promotes critical reflection that justifies our actions. So if we approach an ethical challenge through this narrow lens of moral constraint distress, with the belief that we've already identified the right thing to do, there's actually risks reinforcing the notion that we don't need to understand others' perspectives. We don't need to understand or respect their values, which I think can actually kind of polarize moral stances and the division between us, which can then damage patient relationships, family relationships, and of course teamwork. In the US, the Office of the Surgeon General have highlighted this in a report on healthcare worker burnout. So Dr Vivek Murphy argued that social connection and community is a core value of the healthcare system. He states that one way to mitigate burnout and moral distress is to rebuild community and social connection among healthcare workers. He suggested that healthcare systems should invest in peer support programs, learning networks, and opportunities during working hours to reflect on challenging circumstances and ethical dilemmas. And also, they need more clinical ethicists, of course. So while there are some steps that ethics consultants can take to promote moral compromise through information gathering, promoting discussion, and perspective taking between professionals, I want to suggest the following steps that everyone can take to be open to moral compromise. So when you encounter a moral problem or experience any of the subcategories of moral distress pause, take a moment to try and critically consider the situation, ask questions and be curious, don't jump to a conclusion, then engage in moral dialogue, with the view that compromise doesn't always mean that you've lost, but rather that you've been able to meet somebody in the middle. So I don't want to leave this talk thinking that I'm condemning or think we should condemn individuals experiencing moral constraint distress, because one of the cases that I carry with me is the case of Jonathan. Jonathan was an adolescent with autism and explosive personality disorder, who is in our children's hospital and the ethics consult service with a consulted because his discharge from the hospital was being delayed for various reasons. I was called into a Friday afternoon multidisciplinary meeting, classic, and ultimately the decision was made to restrain Jonathan because we didn't have a sufficient way in which to keep staff safe. Staff who had already experienced workplace violence due to Jonathan's behaviors. So while I recognised the need to keep staff safe, this decision to restrain Jonathan generated moral constraint distress for me, because although I weighed in and highlighted our obligation to utilise least restrictive means, it was ultimately felt by others that the team had tried everything considered least restrictive and now was the time to restrain him. I felt powerless, frustrated, and angry that I couldn't change their way of thinking and the plan for Jonathan, and this is a case that I carry. But I'm not angry anymore. I saw peer support at the time, and now I see the ethical complexity and how this case, like many others, highlights the tragedy that we face every day and the difficult choices that we're left to grapple with. So a couple of key takeaways. So disentangling perspectives, I think, is crucial to understanding moral distress. ac mae'n unrhymdol i'n mynd hynny. to embrace compromise, especially whether it's genuine uncertainty. And I also think that decoupling moral distress from this idea of knowledge of the right action also has great potential to generate moral compromise and to build moral community within our healthcare settings. Thank you. [Applause] Thank you, Georgina. Rich through the thought, let's take five minutes for questions. And I'm wondering how you think about the moral constraint of stress that's verbalized by staff. Every staff's different. They all bring their opinions to work. What do you think is best? We shouldn't have seen, maybe they don't even talk about those, they hold them in their own mind, talk about their own values and don't verbalize them and it impacts them significantly. Out of work, are coming to work the next day. What's the forum, do you think? It's obviously the MDT forum, maybe, but is there a forum that where you can have these conversations so that people can hear your thoughts, not judge them, but so you can actually get them off your chest and say I think this is futile, we seem to be harming, but then have that balance so that you can actually sit with that and sit in that moral complexity. How do we do that? Because I would say that those conversations probably don't happen a lot until they get to a, in our situation, a clinical ethics response group or somebody suggesting there's too much moral distress and we need a briefing on our wards with our bioethics team, which is happening more and more, our bioethics team has been asked to go to wards to debrief with staff. Yep. So I'm just wondering what your thoughts are in relation to that? Yeah, so I mean, the way in which I think about moral distress is kind of like pain essentially. People are going to experience the different types of moral distress for different reasons at different times and at different intensities and so that also means that we need to have a lot of different approaches, like it's not going to be a one size fits all to then mitigate any of the different subcategories of moral distress and also with moral constraint distress. So there's a few different things that we've been doing and there's going to be more work in kind of testing and generating the evidence base there because we've spent a lot of time evidencing moral distress as a problem, but we haven't done so much work in kind of testing those interventions. I mean, I think one crucial component is recognising that I think it's everybody's responsibility to look out for each other. I think, and we had a session this morning around using a peer support tool, so we've developed a peer support tool that you can use with kind of a trusted peer to actually ask more questions because I agree. So Lucia Woeschel and nurse ethicist in the States, she says that, you know, the appropriate response to moral distress is always tell me more. And I think that's true. I think, you know, moral distress is a red flag. It's a warning sign that there is a moral problem that needs deeper exploration. And so that requires, you know, questioning. So we have to validate the fact that somebody's having this emotional response and that's okay. If you're angry, you're frustrated. That's fine. But we also need to ask more questions to try and understand what's happening. And that's where I think it's really helpful to have that partnership with, you know, the clinical ethics team because they can also help to unpick those value conflicts. How do we move from where we are to having those discussions every day with a clinical team at the bedside so that it doesn't require specialist clinical ethicist to spend a lot of time and effort to get to work out what people are thinking? How do we get our clinical teams to ask each other, to talk to each other, to be kind to each other? Yeah. Yeah. I mean, I feel like it's, like, communication, you know, it's like the age-old issue. Like it's forever an issue. And it's forever something that I think we focus on year after year, but it's these issues always arise, and there's always going to be personality clashes and people that just kind of really struggle to really work together. Yeah, I think it's the same old stuff of, like, education, communication training. But it's where there's, like, those, you know, deep value conflicts as well, but I think it's essential to have an ethics expert there as well because it's going to be, like, groundhog day with the teams because you're just going to have the same discussions over and over again, I think, unless you have that, you know, impartial person that can come in and really try and unpack some of that. Georgina, do you think we need to help people to learn that it's OK to disagree? Yes. 100%. Yes. And it's still OK to keep talking, even when you disagree? Yes. Yeah. And I think that's, like, you know, that's the heart of moral compromise. Like, it's OK. Like, we talk about moral compromise in such a negative framing, and it really puzzles me, because to me, that's often what we're striving for is this moral compromise points, and that it's, yeah, reasonable people will disagree, and that's part and parcel of really difficult and meaningful work. Use the language of personal values, but there's a kind of old fashioned word to describe that, which is conscience. And traditionally, you do not ask people to act against their conscience. And our conscience can be misinformed, it can be better informed, it might be guided. But if somebody really holds a personal value that they can't compromise, it seems to me a pretty strong statement to suggest that they should act against those values. So what happens when they really can't? What do you do then? Good question. And I think it's really important that we distinguish between, you know, feeling uncomfortable from a personal perspective versus truly feeling that, you know, your conscience a deeply hell belief is being violated. I think that, you know, we have mechanisms for allowing for conscience claims in specific areas. But I also think it's very important that we don't just kind of name things. Like, oh, well that just goes against my personal values because there needs to be a good reason to make a conscience claim. And there also needs to be somebody to be able to provide that care to that person. So I think it's important that we kind of disambiguate between those different things. And yeah, I don't think we should use moral distress in that kind of way. I think sometimes it can get weaponized in that way and that can be, I think, a bit dangerous. Jojina, I've got one easy question for you from online. When parents are disagreeing with each other, building on this idea of compromise, how can we always at our role to engage parents in compromising with each other? I was wondering whether this was really going to be an easy question. Yeah, I mean, luckily in Ohio, it's a one-parent state. So you don't actually have to have them agree. But yes, I think that, you know, that is one of those areas where it can be really helpful to have a clinical ethicist that can sit down with the parents. Hopefully they're willing. It's really difficult when they're not willing to actually sit down and talk through kind of the choices. I think another area that kind of to shift it a little bit to the moral distress stuff that really hasn't been explored is the moral distress that parents and other, sorry, get decision-makers' experience. There's like, I don't know, two studies, I think, that actually look at that moral distress, but, you know, we see it all the time. And crucial that we start paying attention to that as well, I think. The reports you made about peer support, about parents' moral distress, about staff's moral distress, is there a place for trained mental health specialists to work with each of those professional groups and the parents in trying to address this with the least worst outcome? Yeah, it's a great question. So yeah, we have some data that we've collected with nurses at the Cleveland Clinic, and they talked about using our employee assistance program as a resource for when they experience moral distress. So working with social workers that are essentially kind of, we actually have our own internal EAP, so they can have kind of six free counselling sessions. So they talked about utilizing counselling, essentially, as a resource for their moral distress. And I think that highlights something that's really important that moral distress is, it's the moral issue, but there's also the psychological distress. So I think it's really important to have, you know, trained ethicists and also trained, you know, psychologists, psychiatrists, mental health workers that are also able to recognize the signs and symptoms of moral distress. We've actually developed an intervention, our moral distress reflective debriefs. I'm plugging them here now. If anybody's interested, we do training programs for people that would like to learn how to facilitate those, but essentially that is an intervention that we developed in partnership with social workers. So we come together and we facilitate group discussion, and we invite healthcare professionals to discuss their experiences of moral distress, and we have an ethicist there that's able to unpick the values and the ethics components. and then we have a mental health professional that can provide that mental health support too. Because, you know, I recognise that I'm an ethicist, I'm not a mental health professional. So, yeah, I think it's really important that we collaborate to develop some of these interventions as well. Thank you, Georgina. Thank you. That was Georgina Morley, setting the scene for the 2024 National Pediatric Bioethics Conference, the cases we carry. The conference and this podcast were made possible by generous donations from the friends of the Children's Bioethic Centre or Exilery and the Humanity Foundation. The conference has held every year in the first week of September. I hope you can join us. This conference session was recorded by the creative services of the Royal Children's Hospital. Please share this podcast with your colleagues and friends. If you would like to know more about the activities of the Children's Bioethic Centre, research RCH Bioethics. Essential Ethics, be inspired.