Thank you. So glad to see some folks still hanging on with us today. So I don't have any specific conflicts of interest, but just some disclosures. I have some funding to do some bioethics work. And I have a couple of professional ties, including working on the pediatric end of life guidelines for SCCM. So today, I'm going to kind of merge a little bit from what Dr. Khan was talking about with unilateral DNRs and the difference between physiologic futility and potentially inappropriate treatment to thinking about where does the conflict between clinicians and patients or their surrogates arise from, and what can we do to mitigate that conflict. And one of the key tools that I think I'm hoping to leave you with is the use of narrative medicine competencies to effectively clarify goals of care and to develop ethically grounded advanced care plans that can be tailored to the particular clinical situation and the values and goals of the patient and family. I'm going to start with a case, and this was a case that we struggled with in our ICU, a four-month-old male with anencephaly and a large encephalocele who was admitted with acute respiratory distress in the setting of rhinoenterovirus. He developed worsening hypoxemia, and there was a rapid response call. And during the evaluation by the ICU team on the floor, the encephalocele, which was larger than his cranium, ruptured. And he was rapidly transferred to the ICU. As this was going on, there were very intense discussions that involved neurosurgery, the PICU team, palliative care, and the parents. The neurosurgeons felt that there really was no surgical intervention that they could provide that would bring more benefit than harm to this infant. And the intensivists were really concerned that they would actually cause more injury with invasive interventions like intubation and CPR. The patient was tenuously stabilized with nasal IMV, and there was a request for ethics consultation specifically with the request for authorization of a unilateral DNR and do not intubate order. But behind that specific request was a great deal of moral distress around even continuing to provide intensive care, and a feeling that this constituted futile therapy. So I'm not going to go over these definitions again because Alex just did a great job of explaining all of that. So I'll move on to just talk about what, well, these are the ethical questions that we struggled with. So thinking from a principlist approach about beneficence and non-maleficence, recognizing the subjectivity that is inextricable from those considerations. So when we're thinking about benefits and potential harms for a patient, whose perception matters most? Is it the clinician's, or is it the patient's, or their parents, or surrogates? Which benefits or harms are we focused on more? And recognizing that even if we agree about which benefits and harms are relevant, we may prioritize those differently. And then thinking about short versus long-term goals when we're considering whether a treatment is potentially inappropriate or physiologically futile. Questions around professional integrity arose. When can we say no? And if the neurosurgeon can say there's no surgical intervention appropriate here, why does the intensive care team have to continue providing ICU-level care? Questions around respect for persons. Respect for the person of the patient. When do we cross the line from doing things for the patient to doing things to the patient? When does it become, when does a clinician or a patient becomes a means to an end? Who is this really for, the patient themselves or the parents? And then resource stewardship, of course. Is this an appropriate use of this ICU bed? Where does the conflict arise from when there is a different perspective on the appropriateness of treatment from the clinician side and from the patient, surrogate, or in this case, parents? So first of all, there is often misinformation or misconceptions. These parents in particular had a belief that modern medicine is so powerful and there must be some answer out there. You're the best children's hospital in the area. Surely you can do something to help our child. Parents and other caregivers often have an inappropriate belief that CPR will be efficacious and that ongoing intensive care will bring about the hoped for result of return to baseline functioning. On the other hand, providers can also have misconceptions. We are notorious for believing that the patient's quality of life is worse than it actually is when rated by the patient themselves or by the family who knows them well. And recognizing that oftentimes when we're thinking about the goals, what constitute appropriate goals of therapy and what is or is not appropriate, there are quality of life assessments that wiggle their way into those considerations. There are often misunderstandings and incorrect assumptions that happen when conflict arises. So in this situation, the parents may believe that the healthcare team is just done with them. They just want to be done. They're giving up. And the providers may be concerned that the parents are asking for, they may make assumptions about what the parents are actually asking for when they say we want everything done. And potentially without asking further questions about what that means to that family. And then distrust is often at the heart of conflict. So for the family, there may be prior healthcare experiences that have influenced the way that they interact and whether they trust their healthcare team to offer and not offer things that are appropriate. And this is especially relevant to populations who have experienced historical discrimination in healthcare settings. And then finally, there can be different epistemic value systems. And what I mean by that is that the kind of knowledge that we privilege in making medical decisions is different for us as healthcare providers than it is for most patients and their family members. So while we are looking at the evidence that's available to guide prognostication, outcomes data, physiological variables that we have on the screen in front of us in the ICU, perhaps a trend in labs, families are thinking about who this patient is as a person. And what a fighter they are. There's a lot of intuition, emotion, and often faith and religious beliefs that play into it. And so those different perspectives can lead to conflict. I love this quote. In every conversation with every family, there are multiple decision points in which word choice, tone, emphasis, and nonverbal cues can affect the family's understanding, well-being, trust in the clinician, and the decision-making process. So this is why our words are so important and our presence, our listening, is so important. And this is where the narrative competencies come into play. So when we take a narrative approach to untangling conflict with families, we stop and we think about this family's unique story. How is that story being told and by whom? Which voices or perspectives are missing? And important in that is attending to intersectional identities, meaning that individuals in this story hold multiple different identities that intersect in the way that they're understanding the situation and showing up to this decision-making process. It's important also to maintain narrative humility, to resist privileging our own viewpoints and stories, and to remain open to others' lived experiences. And I am a huge fan of Eva Cattay and her maxims, her best practices for ethical thinking. So first, epistemic responsibility. Seek to know the subject. Epistemic modesty. Know what you don't know. Humility. Resist the arrogant imposition of your own values. And accountability. Attend to the consequences. And those practices are an important complement to narrative competencies in clinical decision-making. There's also something really powerful that happens when we pause and listen to stories of families. There is a power in hearing and witnessing that allows us to connect with families in a way that we cannot when we're rushing through and coming with an agenda. And Rita Sharon talks about an ethos of reciprocity. So this idea of what listening does to us, it opens us up to our mutual vulnerability, the universal experience of being human, and offers a radical alternative to the framework of unequal power or resources. So this is how we get past the power structures and the hierarchy in medical situations and the othering or otherness that families feel when they come into our clinical spaces. A narrative ethics is one that's characterized by the telling, the listening, the giving, and receiving that mark and create the permeable boundaries between sickness and health, the permeable boundaries between self and other. What do we do with hope? Because a lot of times when we come into this conflicted situation where we believe something is really inappropriate to keep doing for a patient or to impose on a patient, and the family is asking for that, why? Hope is a part of that request. So what do we do with hope? Well, I think first of all, recognizing that hope is innately human. This is a quote from one of several qualitative studies that I'm going to kind of speed through. But it's driven by love that we can't even conceptualize. It's love for that child that drives the hope, an element of the parent-child bond. Hope is a part of a parent's role, and I would argue that this is equally relevant for adult caregivers of adult patients. There's hope here, even though it's pretty dire, and my job was to have that hope and be a positive influence. And we recognize that hope changes over the course of illness. But I think what's interesting is the way that clinicians sometimes feel an obligation to facilitate a shift in the nature of hope for caregivers, and whether that's actually even possible or something that we should be attempting to do. So how does hope evolve? Hope is really a deeply-rooted, irrational phenomenon that changes over time in a dynamic, nonlinear process that is unique to each patient, family, and situation. Multiple hopes can be held simultaneously, and so that might include hope for recovery to the previous baseline of functioning, or a cure from some really awful illness. But it might also be hope for minimal suffering or feeling loved and connected. And in qualitative studies of parents with difficult-to-treat cancer, parents acknowledge that their hopes differ from what is likely to happen. So parents can actually hold that hope and recognize the clinical reality of the situation. And it's a coping mechanism for dealing with a poor prognosis. So whereas healthcare providers often view hope as a linear trajectory and feel this obligation to move families along, parents have hope that is channeling into different corridors and have this — sorry, this is clinicians that want to guide families and feel this tension between providing false hope and destroying hope. And it really — there's a sense that the hope is in conflict with the reality of a poor prognosis. And what works better than trying to push parents' hope along a particular trajectory with a particular speed is instead nurturing the hope and helping families to hold that hope while we provide a realistic set of goals. And so healthcare provider behaviors that help to nurture hope are right in line with narrative medicine practices of being present, treating the patient as a whole person, working on controlling pain and other uncomfortable symptoms and not tying that palliative care to a particular decision for the family. So what is — how does this relate to navigating conflict? So if we pull these narrative practices and dealing with hope into the conflicted decision-making state, take time to understand the parents' perspective. What are they asking for? When parents say, we want everything done, what does everything mean to you? And listening to their whole story, understanding the core values and what it means to them to be a good parent. Provide honest information with sensitivity and empathy. And in this way, we balance the bad news that we are obligated to provide with optimism for realistic hopes. Align with the parents' hope while clarifying realistic goals. This is where I love using the phrase, I wish, because I do truly wish what they're wishing for, but I also can tell them what is and is not going to be possible. In that same vein, though, being honest about the limitations of medicine and transparent about the uncertainty of what we do and don't know is very, very important for maintaining trust. It's important to seek input and advice from other professionals and obtain consensus, particularly when we are engaging in that seven-step process around considering potentially inappropriate treatment. Part of that is facilitating a second opinion, and I would argue that that second opinion should be the one that you would want if your own child was in that situation. And then, of course, using a consistent and fair process for saying no, and that involves, of course, involving ethics consultation and providing families the opportunity to transfer care. So advanced care plans can be tailored by recognizing that the CPR status, the code status and decision-making around that particular aspect does not have to dictate the rest of the care plan. It may be appropriate to have different care plans for a situation where the patient is deteriorating from progression of their underlying disease process as opposed to an unexpected acute and potentially reversible event, and those may be things that require different plans. Time-limited trials of life-sustaining treatment are often useful, but the length of trial and the criteria for stopping should be clear in advance. And finally, healthcare providers still have a primary obligation to protect patients from harm and to avoid physiologically futile and non-beneficial treatments. So how did this case turn out? Well, when we spoke with the parents, they shared that they really understood that there was no curative or corrective therapy for their son and that his condition was life-limiting. They had observed that the patient had already outlived and outperformed every prediction made, and so when we gave them our predictions, they said, well, but we've seen him beat those odds before. They also had a strong spiritual faith that God has the final word, and they felt a really strong connection with their baby and had become incredibly skilled caregivers for him at home. So really, when they were asking for everything, what we learned was that they were asking for interventions that would help him, and they were asking the clinical team to avoid premature closure, to seek creative solutions, and to be invested in what they were hoping for for their son. We did have an extensive ethics consultation process. We involved our palliative care team and spiritual care support. In collaboration with our neurosurgeons, there were multiple second opinions obtained and no additional options for intervention. Ultimately, no surgery was offered, and after the ethics consultation process, a DNR and DNI order was placed. The parents were informed of that decision and understood and accepted it, and the baby was weaned to nasal cannula, transitioned to enteral antibiotics and pain medications, and went home with hospice support, where he lived for another four months before coming back for end of life. So I'll end there, and thank you for your attention.

end-of-life care

ethical challenges

narrative medicine

clinician-patient conflict

compassionate care

hospice transition