Jeremy Garrett, PhD (Host): Hello and welcome to another edition of the Pediatric Ethics Podcast, sponsored by the Children's Mercy Bioethics Center. My name is Jeremy Garrett. And today, we're thrilled to bring you another episode in our ongoing series in partnership with the Journal of Pediatric Ethics, where we feature interviews with authors of recently published articles in the journal.

It's my pleasure to welcome Dr. Ian Wolfe, Director of Ethics at Children's Minnesota and the editor of the Journal of Pediatric Ethics to introduce today's guest.

Ian Wolfe, PhD: Thanks, Jeremy. Hi, everyone. My name is Ian Wolfe. As Jeremy said, I'm the Editor-in-Chief of Journal of Pediatric Ethics, and you can find our journal by the time of this release of this episode at childrensmn.org/journalofpediatricethics, where we are moving to open access, so all of our articles will be accessible to the public at no charge.

I'm thrilled today to talk to Dr. Tyler Clay, who is a resident in Internal Medicine and Pediatrics at MedStar Georgetown University Hospital in Washington, District of Columbia. Dr. Clay wrote an article for Volume Four Issue One of our journal titled, A Narrative Approach to Assent in Pediatrics. Welcome, Dr. Clay.

Tyler Clay, MD: Thank you for having me.

Ian Wolfe, PhD: Dr. Clay, I was really interested in this article, and so were our reviewers, obviously, as it's now published. As someone who sort of grew up into bioethics through Arthur Frank and Narrative Ethics, it really spoke to me. But I'm curious to hear from you, you know, what was the motivation for writing this article?

Tyler Clay, MD: The motivation, I would say, is mainly twofold. The first is as an internal medicine and pediatric dual training provider, I've seen a lot of pediatric patients with chronic diseases who have grown into adulthood and are making the transition into adulthood, and have had struggled both exerting their own independence over their care and their decision-making as they make that sort of legal transition into being the primary decision maker in their care.

My goal was to hopefully have some sort of decision-making aid that could help them develop those skills as they're making that transition. And then as well in my own work and study in ethics through my training, I've found that there's particular parts of narrative medicine, and then the approaches that that particular approach lends itself to, and some of the skills that are inherent to those approaches are particularly valuable to pediatric patients. So, that's the primary thing to help create some sort of model to help develop those decision-making skills and to help approach certain decisions for those patients.

And then, underneath that, narrative medicine and narrative ethics, there's not much work or writing about the potential value of that in pediatric care in general. So hopefully, opening up a space where there can be more work and discussion on how narrative ethics, and narrative models might be particularly useful to pediatric patients. So, those are the two primary goals.

Ian Wolfe, PhD: Yeah, certainly your perspective as a Med-Peds person probably lent to the view of how necessary this is as we transition adolescence into adults. One thing that struck me thinking about it that way was plenty of physician ethicists such as Yoram Ungaru and Doug Diekema have written about the importance of looking towards assent or inclusion into the decision-making of the adolescents, not only from an ethical standpoint to provide moral importance to their input and their decision-making, but also in the development to help them develop decision-making skills as they progress into adulthood. So, those two together, I hadn't really thought about it, but then I read your article thinking, "Well, gosh, yes, this is a great place for narrative, not only from an ethical perspective to provide them with that moral voice, but from a developmental perspective.

Tyler Clay, MD: Yes, I agree. I think one particular thing that a narrative approach is capable of tackling and it is the continuous process of these decisions. You can approach decisions as we need to make this decision right now, but there's also like the continuous process of a patient's care. There's multiple decisions and depending on exactly what a patient's condition is. There can be multiple decisions overarching their care over time. Narrative approaches, I think, lend themselves to the ambiguity that a patient might face over time and, you know, what exactly might happen in the future.

I think a narrative approach is particularly useful in helping tackle some of that uncertainty that is really inherent to being a patient and much more so for pediatric patients who legally just do not have as much control over their care as other patient populations.

Ian Wolfe, PhD: Your case that you bring in there, Jake, the unfortunate boy with a chronic condition, I think, highlights that need to consider assent as you note from analyses as a part of a continuous interactive process, not just about the current decisions, but about, you know, long-term building them up to make decisions.

And I really like how you provided this model. I think that's, you know, one thing we strive to do at the Journal of Pediatric Ethics is provide practical ways for clinicians to utilize things in their practice in ethical situations. And I was really struck by some of the ideas that you put forward in there, not only just noting that this really hasn't been-- while we discuss in the AAP that you should involve children, how do we involve children has always been sort of the question here. Your model of narrative emplotment, stimulation of imagination, and invitation to assent really struck me practically helpful. Did this develop just out of your interactions or thinking about interactions?

Tyler Clay, MD: I've encountered multiple patient encounters and specific patients that lended themselves to inspiring the fact that having some sort of practical approach would be useful. It's very easy in my own practice to walk into a room. There is a very caring parent with lots of questions who overtakes a conversation, just because the fact that they're very curious about what's in store for their child. They're very worried about their child, which of course, they would be dominating a conversation because of that is common, and it's very natural as a provider to focus on the person who's asking a lot of the questions, who is making the decisions. That's natural and it's easy to fall into that, having some sort of practical approach where you are focusing on the child and the things that brought them to the point that you're at, and keeping in mind that they are the ones that are going to be dealing with the consequences of the decisions that are made for the near and far future. I think those things are important and having a model that really lays those steps bare and kind of refocuses the child at the center of the story, I think, is incredibly useful. So, even having the explicit steps within each of the domains that the model puts forth I think is helpful, but then just having that visual to bring the child back into the center, I think, is also really helpful as well.

I think narrative approaches are very helpful in kind of recontextualizing things and bringing people's focus back to the patient at hand, especially when there's multiple other perspectives involved, the parent, the care team, oftentimes. You know, I'm at Georgetown where we have a large pediatric transplant institute. We have a lot of chronically ill children who have been dealing with their conditions since birth. A lot of the parents and a lot of the nurses have been working with these children since they were born up until, you know, we have several, like, 18, 20-year-olds who are still frequently on our hospital service. The providers, the nurses all know these children very well. There's dynamics between the providers and the nurses. There's dynamics between the nurses and the families. And those things can greatly influence in both a beneficial and non beneficial way a child's care. Having steps that you can reference that can lead you through a process that's intent on recontextualizing and recentering the child in the decisions that are being made, I think is incredibly helpful because things can get messy, of course, we all know.

Ian Wolfe, PhD: I like your pointing out the sort of social milieu that happens in these units, especially when pediatric patients are there long-term. I think most of us who have spent time in a unit with chronic conditions understand that there really is new social structure that is created around those and really does affect parents of chronic kids and that are staying in the hospital for a long time, get to know each other.

And as you point out, it's easy for the child's telling of their own story to happen. As you point out, you know, this question in your article, to whom does this story belong? Which is something I think Arthur Frank asks a lot of, is In his book, it's a little bit different when talking about pediatrics, especially adolescents where their own telling of their own story is burgeoning, and can easily be overtaken as you point out in situations. Have you used this model? I kind of want to move into just more of like how this model works for our listeners here.

Tyler Clay, MD: Yes. So, I have in my interactions, especially during my time on our transplant unit at Georgetown, used this model. I have to plug that I've used it outside of the pediatric realm with geriatric patients as well in the ICU setting. I felt that these steps have lent themselves just as well to that population, but has been particularly useful in the pediatric transplant unit.

Ian Wolfe, PhD: Yeah. There's certainly some overlap there with, you know, who's telling whose story. So, you start with this idea of narrative emplotment, which I think for those of us who love narrative and love stories and, of course, most of our Developmental and Child Life folks would tell us that not only do humans learn by stories, but children especially learn by stories.

And so, to me, it really struck me as a way not only to place importance back on the child's telling of their narrative, but help them understand how to construct and navigate their self within the world. So, narrative emplotment is this first step. Can you talk about that a little bit?

Tyler Clay, MD: Yes. So, narrative emplotment, it's using a narrative tool set to contextualize the care for the patient. The model that I've put forth, the practical way of doing so is utilizing questions for a pediatric patient to help build a story of both how they got to the point that we're at, and to really lay bare the stakeholders and the important people who have helped get them to that point to really develop some of those social relationships, the social milieu as we were discussing earlier.

For instance, I can think of and again, I'm changing some of the details to keep this patient anonymous, but for one of our patients on the transplant unit, when I first met her was a 17 year old girl, who had a lot of non-adherence to her immunosuppressive regimen. She was post-transplant and had been admitted multiple times in the past for rejection, secondary to non-adherence to her immunosuppressive regimen. There was a lot of disagreements between her and the providers, her and her mother, who was trying to allow her some amount of independence with managing her medications, a lot of frustration from the nurses and the provider team due to the multiple admissions and because of the non-adherence, frustration with the mother for allowing child to miss medication doses.

So, when I first met the child, a lot of my conversations with her were to try to elicit exactly what her understanding was of her condition, what the many different reasons that she had missed medication, and then just exactly what the relationship between her and her mother, what her relationship between her and the providers, between her and the nurses on the unit, because again she knew all of these people very well from a young age.

So, we were able to piece together that she both likes and dislikes being on the unit. She likes the care that she receives. She likes the attention. But as she's gotten older, she also wants to exert her independence, and not taking her medication is one of the ways that she exerts her independence. So, we were really able to flesh out a lot of the complex dynamics and put a name to a lot of the things that led us up to the point that we were at, which was another episode of rejection.

So, the model gives example questions that you can ask, but really focusing on the child's understanding of their condition, the things that led up to them having that condition, if it's congenital, if it's not, and then their relationship with a lot of the stakeholders that are involved to try to create a story that the child can latch onto and use for reference for the future steps that I'm sure we'll get into.

Ian Wolfe, PhD: Yeah, I really like that. You're sort of setting the person within their own story, providing them that structure, looking at actions, consequences, eliciting the roles of others, sort of like what are the characters in your own story and sort of setting them up that. And then, you move into the next part of the model, which is stimulation of imagination.

Tyler Clay, MD: Yes. And then, just to add one more thing to the first step, a lot of work in narrative medicine is about letting the patient's story kind of hold its own weight, and then helping them reflect back on that. In this model, just knowing that pediatric patients are at different stages of development, there is a lot of teamwork between the provider and the patient to help create that story, a little bit different from some other narrative medicine practices.

 And then, yes, for stimulation of imagination. So again, this is the second step in the model. It's taking a lot of the story that was created with the patient and using narratively driven questions to help explore the potential options that are available for the patient, and helping them explore exactly what the consequences of those choices could look like.

For instance, for the patient I was discussing earlier, we asked, " What do you think your future would look like if you continue to not take your medication? What do you think would happen if your liver were to fail again, and you would need another transplant? Do you remember what that hospitalization was like before? How do you think things would be different? How do you think things would be the same? And then, you know, if you continue to not take your medications, and you're not able to get a liver, what would that look like? What does palliative care look like? And then, who would be taking care of you in those situations? What do you think your mother would think? What do you think about the amount of time that you would be spending on the transplant unit? That'd probably be more. What do you think about that?" So, really laying bare what the consequences of and what their life looks like when those choices are made, and exactly how the stakeholders, again, fold into that. "Do you want to keep seeing us this often is an important question for a lot of teenagers. Do you want to really keep having to rely on your parents as much?" That's an important question for older children.

There's example questions in the model, a kind of framework of the types of things that you can ask, again, highlighting what the consequences of choices are, how that affects their interaction with the big stakeholders in their life, helping them explore that. And again, it's meant to be helping them create a continuation of that story. Narrative models, I think, lend themselves well to malleable future. Narrative, I think, really lends itself well to, making sense of what's uncertain and helping bring back to the center what's important to that person in the midst of all of that uncertainty, I think there's a certain amount of resiliency that we can help develop in patients and providers by using a narrative model.

Ian Wolfe, PhD: Yeah, I can certainly see the benefits, especially for, you know, an adolescent and teenager dealing with their own chronic illness. it's not just about how do we keep them healthy and set them up, but how do we set them up to really make decisions longer term, And of course, this is a model of assent. But as you note, I think, appropriately in the model, preparing for dissent. And one thing I like about this model is I'm a big believer that structure drives behavior. And one of the things I think interferes with our allowing a child's narrative to come to light or to be acknowledged is this tension between, well, if we give them a choice and they dissent, then what are we going to do? So, let's just not even put the choice to them. There's this fear of what do we do if they dissent. You bring forward and acknowledge, I think, quite well in this sort of prepare for dissent, but invite assent.

Tyler Clay, MD: Yes. And having an explicit framework of both how to honor someone's dissent, especially when we're moving forward and treating over that dissent. I think it's important to have those steps laid bare, and then also how to honor someone's assent in their buy in to a treatment plan.

I think those things are important. There's nothing absolutely world-shaking about the steps in this third domain of the model. I think it is important to have those things laid bare for someone who is potentially treating a pediatric patient over dissent. Putting it upfront that it's important to be apologizing and acknowledging that we are treating someone over their dissent is important, both in maintaining the provider-patient relationship, as well as, I think it's important to do that, to continue to honor the story that we've worked so hard to help them build up until that point.

And then, to just make it clear that you're still a stakeholder in their care, just as much as they are, even though you're treating them over them saying that they do not want that thing. So, it's an important thing to both respect the person and the story that you've built with them.

Ian Wolfe, PhD: I agree. And I think that's why it's important is because I think that's where a lot of clinicians struggle with, right, is letting them dissent seems bad, but also overriding them seems bad. And I'm stuck in this sort of between two bad options and what this does, other authors have noted this as well, as you point out, Navin and colleagues, talking about, "Hey, we don't do anything by ignoring this." We should, as you say, lay it bare and say, "We want to honor that you're dissenting, but also understand why we have to override that," and try to make those two things known.

What I think that does is it, you know, allows clinicians to understand that, you know, both options are not great, how do we go forward, which is then trying to do what's best, which is, as you say, acknowledging their dissent, and as you know, as you point out the quote from Navin and colleagues, you know, respond to the moral loss one has caused and express regret for it, even when one has acted in a way all things considered morally best. And just bringing that out, I think, provides you with the reason, the clinicians, with the reason why we're doing this, but also acknowledges that even though the right thing to do is override dissent, it is still a harm that we're causing that child or that adolescent or teenager as it would be in this case.

Tyler Clay, MD: Yes. An important thing for me when talking about this step in the model was, you know, the AAP's guidelines on consent, which talk about this a little bit in the paper. It says to invite, not invite assent, that's the terminology that I use in the paper, but to invite assent only when dissent will be respected. And that's something that, first of all, it's not always done practically. It's important to have some sort of practical steps for when we are treating someone over their dissent, because we don't always have to ask someone's permission to do something for them to say that they do not want it, hopefully having some sort of framework to, approach those uncomfortable spaces.

I really like a continuous model of assent because something, that's uncomfortable for me as a provider, both treating pediatric patients and older adults who lose their ability for capacity is that it's more and more clear when you're treating more and more people in these situations that there is some moral weight to someone's ability to voice a preference, especially when you are treating them over that preference. So, having some sort of stepwise way to give some sort of respect to that preference, I think, is important. It's helpful for me as a provider as well, and being able to maintain my resilience in doing this work, as well as it's important to show that respect to patients.

Ian Wolfe, PhD: That's a really good call. And I think that's maybe a limitation in the AAP guidelines is practically you're still overriding somebody who, while they may not have full capacity for exercising their autonomy, they might still have bodily autonomy or bodily integrity or an interest in controlling that. And that provides an ethical tension for clinicians. And you adequately call this out and maybe there's room for you on the next revision of that guideline.

Tyler Clay, MD: And there's a lot of really good things in that guideline.

Ian Wolfe, PhD: Yes, there is.

Tyler Clay, MD: Not to completely disregard that.

Ian Wolfe, PhD: Right. Well, Dr. Clay, thank you so much for writing this for your time today. I really enjoyed this, and will definitely use it in my teaching around the hospital here. I think it really speaks to the practical application of these ethical considerations.

Tyler Clay, MD: Yes. And thank you so much, and I'm hoping to see more and more work about what narrative can do for the kids we treat.

Ian Wolfe, PhD: Thank you. If you have an article for submission, we are taking submissions to the Journal of Pediatric Ethics. We publish two issues per year. And if you're looking for this article by the time of this episode being up, we should be on childrensmn.org/journalofpediatricethics, where you should be able to access this article.

Jeremy Garrett, PhD (Host): And on behalf of the Children's Mercy Bioethics Center, let me thank both Dr. Wolfe and Dr. Clay for a very stimulating and rich discussion of a narrative approach to assent in Pediatrics. And thank you all for listening to this episode of the Pediatric Ethics Podcast.