Howdy. There you go. Whoa, I got to put this down. There we go. Okay. So I'm a peds intensivist and bioethicist, and I'm going to be talking about conflicts that arise in the pediatric ICU setting. I have no conflicts of interest to disclose. The views expressed are solely my own. And I'm going to talk very briefly about some patient stories, but all the pictures I've taken and the stories are all publicly available on the internet, so HIPAA does not apply. I wanted to talk a little bit about parental expectations, specifically expectations and hope. So we know that parents sometimes will have some unrealistic expectations. And one of the things that we see is that sometimes we are the ones that facilitate some of those inappropriate expectations. So if we just start looking at some logos and slogans, Children's Philadelphia, Hope Lives Here, Driscoll Children's, Offering Hope and Healing, Seattle Children's, we provide hope, care, and cures to help every child live the healthiest and most fulfilling life possible. So those seem fairly reasonable. But then we start seeing some really interesting ones, like Sanford Hospital, When It Takes a Miracle, We're There, Rady Children's, Making Miracles Happen, St. Jude's, Finding Cures, Saving Children. And you can start to imagine when you walk down the halls of the hospital and you're a parent and these are the slogans that you're seeing, that maybe you'll start to think that miracles really do happen and you may start to develop some very unrealistic expectations. So I think we set ourselves up for some problems sometimes. Another source of conflict is around trust. So parents often have never met ICU providers and staff before their current admission. We certainly have some kids that come in frequently and some adult patients who come into the ICU frequently. But for the most part, the very first time they ever meet us is at really the worst time in their life. And it takes time to build relationships with patients and families. And that trust is often lacking when we first meet families and often when their children are at their sickest. And there may be a lot of underlying mistrust. So parents who've had bad experiences with healthcare in the past, we see this quite frequently. We've certainly seen an awful lot of misinformation in the last few years with the COVID pandemic. And this has led to a lot of parents really mistrusting us. I actually just got a call a few minutes ago from one of the providers in our ICU that some parents are refusing subcutaneous insulin for their child who's new onset diabetes with DKA because they don't trust the healthcare system. And so how we deal with this becomes really problematic. Long history and evidence of disparate care for patients of minority status. We see this all the time. And parents of children who have minority status often are very distrustful of us. And quite frankly, sometimes for very good reasons. Another thing that we see is a real difference in the way we think about time. And it's interesting to me, these are some quotations that really sort of resonate with what I hear, not infrequently. So from a parent's perspective, my child is completely healthy. Now you're telling me she's never gonna be the same. This is all happening so quickly. We need time to process this very sudden change. And the ICU staff, after two weeks, the exact same patient have a totally different perspective. This patient has a devastating illness or injury. We know they're not gonna get back to baseline. She's been here for two weeks now. There are other patients who need our attention and picky beds. We need to make decisions and move on. This is taking way too long. I hear this all the time. And understanding this very different way of perceiving time is really important because often what we feel like, patients have been around for a long, long time to families and particularly to parents, it's just the blink of an eye. When we look at acceptable outcomes, there's also some real differences, right? So the Society of Critical Care Medicine put out a policy statement saying that appropriate goals of ICU care include treatment that provides a reasonable expectation for survival outside the acute care setting with sufficient cognitive ability to perceive the benefits of treatment. And of course, palliative care can be appropriate in some ICUs as well. ICU interventions should generally be considered inappropriate when there is no reasonable expectation that the patient will improve sufficiently to survive outside the acute care setting or when there is no reasonable expectation that the patient's neurologic function will improve sufficiently to allow the patient to perceive the benefits of treatment. Many ICU providers and staff have that concept of what an acceptable outcome is. On the other hand, parents have a very different perspective of what is a reasonable outcome. Parents for infants are feeding them, clothing them, bathing them, giving complete care. So to many parents, even beyond the infant stage, doing complete care can seem very normal to them. Parents may view total care as just part of the parenting that we're obligated to do even for older kids. And this sense of obligation of parents is very strong. Parents may view even extreme neurological devastation as an acceptable outcome. There's also differences in perspectives and we see this a lot with children who have severe neurological impairment. So parents see the child at home, the child smiles, interacts with family, they have a sleep-wake cycle. So parents focus on the good times for the child. ICU providers and staff, we see kids at their sickest and worst. Often in the ICU, they have no meaningful interaction and minimal quality of life. So we tend to focus on the bad times. And you see that over and over as well. When you talk to parents, their perspective of their child is very, very different than our perspective just because of our focus and when we generally see. And of course, there's been a lot of stuff in the news over the last few years about controversies around death by neurological criteria. Multiple cases of parents objecting. Here are just five. I'm not gonna run through them. They're probably all very familiar to you guys. If not, you can look them up. And these are just five of the most famous. There are many, many more. And so if we think about that, why is there so much controversy over death by neurological criteria? There's a number of reasons. One is that a lot of parents don't think of brain death as, quote, real death. And for a lot of providers, that seems really strange because a lot of providers think brain death is just the same as cardiorespiratory death. But of course, that's not exactly true. And of course, there are many, many ICU experts who've written extensively about the very real differences between them and many have even argued that brain death is really a fallacy and it's not death at all. It's just a bizarre construct that we've developed. Parents also may not trust the doctor's diagnosis. There's been a lot of cases where patients have been misdiagnosed as dead, but they weren't dead. As a matter of fact, just a few months ago, there was a five-month-old at St. Thomas Hospital in England who was diagnosed as being dead who wasn't dead. Here are a few others. Definitely the most famous in my mind is Zach Dunlap. And if you don't know Zach's story, Zach was a 21-year-old who was on an ATV rolled over. He was diagnosed as brain dead. Family agreed to organ donation. He was being wheeled out to donate his organs. Brother-in-law, who's an EMT, did a Babinski and the toe was down going. He said, wait a minute, this doesn't seem right. Zach got much better. He started going on talk shows saying, yeah, I was brain dead and now I'm much better. So he had an almost complete recovery. So these kinds of stories really feed in because, of course, parents don't know who to trust and who not to trust. Morrison and Kishon put out this very, very nice, different types of objections to parental, to diagnosis of brain death that's very helpful. This is in their 2002 Neurocritical Care paper. I don't have time to run through it all, but take a look at it. And we just put out some stuff in the fall 2022 issue of Critical Connections going through one of these cases and talking about how folks can approach these. And, of course, SCCM right now actually has a contestation of brain death task force that's trying to put together a toolkit that should hopefully be out in another year or two. So very briefly, just to summarize some strategies to minimize conflict, take time, don't rush, know the child's name and use it. I can't stress that enough. Introduce yourself, your name, and your role over and over again with every interaction. Show genuine concern for the child and family. Demonstrate empathy. Don't just have empathy, but demonstrate empathy. And if you're not sure exactly what that means, Jodi Halpern has written amazing work in this area, and I encourage you to read her work. Listen more, talk less. Tolerate silence. Sit down, practice active listening, asking questions like, how are you feeling? Pre-plan support, so having tissues, social workers, families, and friends, et cetera, to support families during these times. Being honest, but not harsh. Don't use jargons or euphemisms. One of my favorite examples of that, a family that I was involved with was once told, oh, your loved one has gone on to a better place, and so the family thought that that meant that he was transferred to a better hospital. So, you know, being very clear and not using jargon is important, handing off phone and pager, and understanding time perceptions and the differences therein. And with that, I will end my talk. Thank you so much.

pediatric ICU

conflicts

trust

acceptable outcome

ethical dilemmas