When a Child Dies

All right, as folks start to enter here, welcome, everybody. We're going to take 30 to 45 seconds here to let people join in on the group. We'll get started here in about 30 seconds, so bear with us as we get things rolling.

Peter, we'll keep an eye on the number of participants here. I suspect the other session hasn't quite wrapped up because there's still just a handful of people here. So general, this morning we've been having about 2 to 300 ish folks in these sessions. So we'll give it a little bit here.

No problem. Perfect.

All right, again, welcome, everybody, to this session. As you join in, give us just a few minutes. We'll start things rolling here in about half a minute once people migrate over from the last session. So welcome. Give us about another 30 seconds before we get started here.

Okay, welcome, everybody. It looks like folks are making their way in. We're excited to see a lot of you hanging out for the Saturday afternoon.

I think it's afternoon for almost everybody except for probably Mike Levy in Alaska. Now, the rest of us, it's into the afternoon. So welcome to the afternoon session.

We're going to go ahead and kick things off here. My name is Josh Gaither. I'm from the University of Arizona. It is my pleasure on behalf of the program committee to introduce our next speaker. Our hope is that this builds off of the last session. I'm proud to introduce Dr. Peter Anteve. Dr. Anteve is going to talk to us about when a child dies, formalizing the bereavement process. A little bit about Dr. Anteve, for those of you that do not know him. Dr. Anteve is a pediatric emergency medicine physician. He has been a medical director since 2010 and currently serves as the medical director for several fire departments, including Coral Spring, Parkland Fire Department, Davie Fire and Rescue, Palm Beach County Fire and Rescue. With that, I'll turn it over to Dr. Ann Tevy for a great talk.

All right, Josh. Thank you very much. Hi, everyone. Great to see everyone. Virtually. I guess you'll notice on the title slide here that I have a QR code. It'll be positioned throughout the slides and also at the very end, all of the slides, all of the papers I have affiliated with it and so forth are all in that one folder. So please, as Mike Levy and Ken Chepky say, please, R and D it, rip off and duplicate as you see fit. This is a very important topic for me. I've kind of been living it for many years, and I was really bad at it for a long time. And now that I'm in EMS for over a decade, I'm now starting to understand what EMS really needs. And I hope this builds off of the talk that Jen and Cindy gave just a bit ago. And so I want to start off the talk with a call that really prompted me to kind of put my foot into the water and do something within EMS. This was a 6 year old boy who was playing in the street in front of his house when his father hurriedly sped out of the driveway and accidentally ran him over. The scene was awful in every sense, and mostly because the child suffered head injuries incompatible with life. So the ambulance and the engine arrived and immediately focused on treating this kid. Yet they quickly recognized the severity of the skull fracture and that further care would be futile. He had brain matter visible. The father watched in horror. He stood there alone, screaming and crying. But what he needed most at that moment, he didn't receive. And the crews that arrived on scene were prepared to treat the child, but did not have the skill set to speak to the father. This is at my agency. At that moment, EMS Captain Adrian Castro arrived. He assessed the situation, and that did something that it's not only difficult for most, but it's rarely done at all. He turned and he walked directly to the father. And then he had the most difficult conversation he ever had. And it was one that these two men would never forget. And the reason that story is important is because when I did the CQI afterwards, we did like, let's call it a hot wash, if you will. The ambulance crew and the engine crew were pissed at Adrian. They thought that they should have left that scene. And as much as I poked and prodded as to why they wanted to leave, I kept getting answers that just weren't correct. And I have to give a lot of credit to EMS Captain Adrian Castro for doing what he did. And this really is that story. And then I want to go into some really kind of deeper parts into the data so that we can kind of start to think about this differently. So look at this. This is very rudimentary here. And the numbers aren't exact. They're round numbers. If we think that the survival rate of cardiac arrest and pediatrics is 10% and the death rate is 90%, what would you think the amount of time that we would attribute to training for each of those would be? Now, you and I both know the answers to this is that we attribute 90% of our time to high performance CPR training and only 10% of our time to Training on death notification and the like.

When you look at that and you look at how important that is, you quickly start to understand that we may have it flipped, we may have it backwards.

My goal for today is to really prompt everyone to understand that we're looking at bereavement incorrectly on the EMS side. And by the end of the talk, I'm going to give you just a couple of pointers, some takeaways that I think that we could easily do. You could start it tomorrow without ever calling anybody, but you'll notice that you'll get some resistance. And, and that's really what I want to talk about here today. Now.

I put this together a long time ago, this concept of the arrest life cycle and healthcare providers at the end of that life cycle. So the fourth quadrant is what I call closure. And there's really two parts to closure. Number one, you tell yourself we did everything we could and that allows you to go home that night. I don't care if you're a doctor, nurse, paramedic, you go home that night and you say, you know what self, you did everything right. That's good, that's very healthy. But we also owe it to somebody else to help them get to closure. And that's the family. And it's a. Let me tell you what we did towards the end. I'll tell you why that's important. That families almost never hear the story from ems. Almost never. This is a great op ed from JAMA from years ago. Resuscitations that never end is that if you do not get the closure, then you'll have that resuscitation in your mind for a long time. And just the family's lack of closure because of the lack of speaking to you is exponentially worse. So here is the classic diagram of bereavement. And find here where you see ems. Where is EMS in here? And my sense is right. And again, I'm not that experienced in EMS, only 10 years. But I will tell you, my sense is, is that we say it's not our problem, right? Somebody else's problem. This is a very common misconception and I want to dispel that rumor today. Now, I'm not saying you should go become a bereavement counselor, become a chaplain. Absolutely not. I'm going to really pitch something else today and explain why I think it's important based on some great evidence.

What we hear is the following. I was never trained to do this.

The hospital is going to do it. How many times do we think that we Just take that child to the hospital and then someone there will do it. Now, all of you on the call know, because you all work in hospitals, especially now in Covid, it's probably 10 times worse. However, it's not easy for the hospital to do it and to do it right. And I'm going to show you someone who is very well known in the field of medicine, in the pediatric surgical world, who had an innovative idea years ago, and I think she's got it right. And that's Dr. Mary Fallot. We'll talk about her in a minute.

The biggest one I hear is we wanted to show mom and dad we did something. Okay, how many times have you heard that one? And, and they're convinced that by scooping up that kid off the floor, peeling them out, you know, off the pavement, and then racing to the hospital, when mom and dad still sitting here talking to police is actually something that's beneficial for the family. And there are many physiologic reasons why that is really wrong. One of which is the chemical of pitocin, which I learned this from Alex Jabber from San Bernardino. And when a mom sees her child.

Fallen and on the ground, the pitocin hormone is excreted and what she wants is now closeness, not for someone to peel that child away and leave. And so we need to start to understand that some of these foundational items that we're talking about.

They'Re based in nothing concrete and solid. Another one, it was easier just to leave the scene. And I don't know about you, but in my neck of the woods, if you decide to stay on scene, well, now you have to wait until other people come, police, sheriff, and all of a sudden you're quote unquote stuck there. And so I've been on a number of calls, we call them here, signal sevens, where there's a dead body, there's a family member crying, and as soon as we hear PD walk up, we just turn around and walk out. Because it's just easier to do that with a patient who's obviously dead or with a child who's dead. Oftentimes people don't want to terminate unseen. So what they'll do is they'll just take that kid 5, 10 minute drive to the hospital, drop them off, and then I'm done. My hands are clean of it.

This has so many negative consequences that are really untold and that many people don't talk about. But many people think this comment here is true and that should continue to be done. And I disagree with that here's a big one which is I wasn't sure what to say. And if you're like me, early in my career, trained in la, trained in Pittsburgh, I had a difficult time because it wasn't so easy for me to know what to say. And I still don't have an easy time. But there are ways of teaching this. This is the low hanging fruit. And we'll talk about some of that in a little bit. There's another one. There's too much liability. Is that really true? And so I want to talk about that here based on some evidence. And we'll do that here in a minute. So as I see it, bereavement and pediatrics and ems, there's this huge, huge gap here. And you'll hear legal considerations. Don't have enough experience. I have to overcome my fear. We have to do death notification training. We have to implement policies and protocols. And you heard that from Jen and Cindy in the last talk, which is important. But here's where I think the foundation is missing it is that we really have to understand what the parents need. And then we need EMS medical director leadership. This is really what I'm hoping to convey today, that it starts with the EMS medical director and I'll tell you why in a little bit. Legal ramifications. If I don't continue resuscitative efforts, I will get sued. Is that true? Well, in traumatic arrest, we know it's the leading cause of death. It's about a 5.4% chance of survival. Studies have shown that if you're doing resuscitation for over 20 minutes, they're all neurologically devastated. Of course, the financial and emotional costs of transporting these children to the hospital. And that's why these TOR guidelines that you just heard about were created in 2014. I'm not going to go into those now, but just a quick visual which you just heard about. These guidelines were driven by this amazing person you see on your left hand side with the help of people like Ritu and Kathleen. But Dr. Mary Fallot has essentially dedicated her life to trying to figure out how to help these situations. And I want to talk about her more with her other research in just a minute. Speaking of which, if you have time, go into the Dropbox folder and read this paper that they wrote in 2015. But I want to talk about can professional providers of EMS be held liable for civil damages due to apparent futility? Resuscitation efforts are withheld for a person suffering out of hospital traumatic cardiac arrest. And the answer is Perhaps. Let's take a look at the cases that we know of. First case, unresponsive infant last year. Two and a half hours ago, parents called 911, CCT medic and EMT arrived. As soon as the guy gets there, he sees lividity and he just pronounces. On scene. They sue him. And I'll tell you what happened in a minute. Next case, construction worker falls. He collapses. Sorry about that. A construction worker falls, collapses, has a seizure, is in cardiac arrest. ALS arrives 25 minutes later. They do a very brief evaluation and they terminate resuscitation. They got sued. Last case in the hospital delivery room, physician delivers a baby, 11 minute resuscitation, terminates efforts, never tells the parents he's going to terminate. He got sued. So what do you think the outcome was for all of these cases? Every single one of them was in favor of the healthcare professional involved. And so the elephant in the room is that these, you know, we have a liability risk here, but it turns out, just like you heard in the last lecture, that if you have appropriate guidelines and protocols, you do a careful assessment of the symptoms, then you should be shielded against liability. So I think we could take that elephant that's in the room and we can say really untrue. So now we're going to move away from, you know, what people think is the case, and I'm really going to try and focus on really what I think matters. And there's no better way to tell this story than to hear from someone, an EMS medical director, who we all highly respect, and this is someone who's going to tell you a story of what they did on scene. He didn't expect me to put this video in here, but I got approval this morning, and I hope you enjoy this quick story from Dr. Doug Koopas.

But with the, this one case, we got to the point where it was futile. The grandfather wanted to be with the child. As we stopped and as we were walking for him to be with the child, he said, she hasn't even been baptized yet. Well, I can. We can do that for you. And he said. And he was like, his eyes just lit up. He's like, oh, could you. And so, sure. So I went to the kitchen, I got a little cup of water, and. And he was there and we were ready to terminate. But before termination, I did the baptism and, and then we did the field termination. And basically what I did, I, you know, got some of the water, put my hand with the water on the baby's head and said, you know, I baptize you in the name of the Father, Son, and the Holy Spirit. And then after the baptism with the grandfather there, we stopped. The child was in asystole. It was clear they were in asystole. We gave it time of death and that kind of thing. Let him spend a little time just sort of holding the child's hand and holding the child, you know, in the aftermath. We have our people all trained to do things like, you know, obviously call the coroner. We also have them trained to, you know, ask. Ask the folks. Is there anybody we can call for you to help support you? You know, a neighbor, a pastor or whatever? A lot of times we call the pastor that kind of thing. In this case, the grandfather, after things settled a little bit, said to me, can we get a baptism certificate? And I said, oh, absolutely. Not having any clue where I was going to get a baptism certificate, but I'm like, oh, absolutely, you know, Then I called from the scene to let their pastor know. I called their pastor, and the guy was on vacation. So then I go back the next day. I call our chaplain service in the hospital.

And the woman that is like the receptionist and admin for the chaplain service at the time had spent. I had known her for probably five years as one of our desk clerks in the emergency department. And I said, I've got a crazy question for you, but I did this baptism and I need a baptism. Where do you guys. Where can I get that? And she said, oh, Dr. Kupas, that's no problem at all. And I didn't even think. They do it in the NICU all the time. Professional with a little, like, gold trip. She said, yeah, I can, you know, give me the name and stuff. We'll print you out a certificate. It's a relatively small town. At one of my. Several years later, at one of my kids science fairs, the mother of the child was there and came up to me and thanked me so much and told me how much it meant. Like, you know, a couple years later, she remembered and specifically was touched by having that certificate of baptism for their daughter.

That, my friends, is compassion. That, my friends, is how you do pediatric bereavement. It's people like this that we need to learn from. It's doing that extra special thing. And so what I want to focus on now is how do parents really feel? And I'm going to really quickly talk through two big studies that really impacted me. This was from Australia, and they actually interviewed parents after their children died. And.

The bottom line was you had to improve Your communication. But what does that really mean from the immediate, short term and long term? Because the communication in the emergency department or on scene different than two days later. And it's clearly different than six months later. And so God forbid we're ever in this type of situation. But parents almost always forget the immediate. But the short and long term are maybe much more important. So how do we get to that point? So they did 26 parent interviews and they asked about during hospitalization, during the dying phase and then during bereavement. So three separate phases. Right. And so let's just kind of quickly talk about that, because this is important during hospitalization. They wanted people to be honest with them, clear and direct, unambiguous language. They wanted to hear it and they wanted to see the explanation and then repeat. They wanted resources for bereavement earlier, right? Not later. And they wanted their kids to have the support as well. What about during the dying phase, the actively dying phase? They wanted privacy, they wanted other family members to be involved. They wanted it de medicalized as much as possible. They wanted the same caregiver, friendly face, creation of a photo book, like some mementos. And they wanted the staff to stay around as much as possible. As much as we want to leave those rooms, they want us in the room. They want help cleaning up and packing the belongings, walking them to the car. You see, they want the closeness. That's what they're people are looking for, the closeness. How do I visit my child in the morgue? How do I spend more time next time this happens in the morgue? Right, because it was an in and out kind of thing. What about during bereavement? It's strongly recommended that follow up care be routinely offered. So they wanted phone calls, they wanted letters, they wanted to meet with the staff afterwards to ask more questions. They wanted us there at the funerals. They wanted their entire family to be involved in the follow up care. And they thought it should start within a few days and then gradually taper off over 12 months. So now you're hearing directly from the families rather than what we think is really going on. So more information is better for them.

So as far as what's happening next, what happens when I go home? How do I plan a funeral? What, what about the post mortem? What does that mean? What am I supposed to feel like? Do I attend counseling? Is there a support group I can go talk to? And tell me about it before I leave, don't tell me about it afterwards. And then are there any other people who have been through this as well. Is there some type of buddy system? These are all things parents said after the fact in this study. Now, you heard about Mary Fallot earlier and she's really a legend in this area. And I had a wonderful conversation with her. If we do not address the grief and the pain, then parents become secondary victims. And so she developed what she calls the BIP Bereavement Intervention Program. So let's go through that real quickly. Four touch points in the hospital, okay? Someone comes, the chaplain comes, talks to the family, then there's a 15 minute visit right, at the funeral home, right? And it sets the stage for the centerpiece. Now, you're probably not going to believe this, but they have an educational outing at a restaurant with a PowerPoint and they invite 15 of the supporters, families who know the parents, friends, and they go through an educational program. And then at the end they do an interview. The assumptions that they have in this program is that parents need to be helped by the people who know them the most. And that's why you bring them to this restaurant. If those people agree to come in, they're probably going to agree to help out and stick around. And if this chaplain, and I'll tell you who he is in a minute, can dispel some of the myths, it allows these people to move together forward as one unit rather than leaving the parents alone. So here they are at a dinner, PowerPoint. Ronald Oliver, he's the chaplain, he's still doing this today, by the way, in 2021. They started this decades ago. And he tells everyone, including the parents, but mainly the supporters. The parents want you to remember their child. They want to hear stories, they want to remember birthdays, they want to, you know, the parents need the supporters to appreciate the significance of their guilt, of their grief and be empathetic towards it. This is not a short thing, it's a long thing. Parents need a multifaceted initiative taking support network, meaning that, you know, the parents aren't going to ask for it, you have to own it. You have to go tell them, I'm taking you to lunch, I'm coming over. And you know, it's not something that they will do on their own. Absolutely not. And this is a long term thing. So I mean, imagine taking this outside of the hospital. This is a hospital, taking it outside of the hospital. What were the results of 77 families and 59 educational dinners? Well, it turns out, and I'll quickly go through this because I, you know, just because of the time, but the bottom line is it's hugely successful, not just in the short term, but mainly in the long term. Dr. Fallot and Ronald Oliver are onto something very big here and I think we all need to follow along. And when they asked the parents, how did those supporters do? They all said, you know what? They're doing great. Thank you very much. And that dinner meeting was really a great benefit. Thank you. So here's a big one though. And this wasn't in the paper, it was at the end of the paper. Parents want to know the details of how their child died and the specifics of the resuscitation. The only people who often know that are us in ems. And now that I've been doing this now for a couple of years, the parents ask what happened. I want to know. They will never come to ask you the question. You have to go tell them. This is who I am. I was on the scene. Let me tell you what happened. It's powerful. It helps them get to closure.

Dr. Fallot and Peter Tailak and others put together a coat that's called Compassion Options for Pediatric ems. It was a HRSA funded grant. It's in the link that I put earlier. There's plenty of things in here that are amazing. And again, she's an amazing person. You should really contact her if you're interested in this at all. And these are all free. This, this all led me to write this article in EMS World called what about the Family? And it's really. Once we start to focus on the parents, I think we hit a home run. Other people now in EMS have put their, you know, kind of foot in the water. This is Alex Jabber. And you know, she has her own course now, which is amazing. I took it recently. So let's kind of end with a couple things. The four step plan. Here's what I think we ought to do. Someone on scene should tell the parents what we are doing. Then in the er. This is what we did. Before you say goodbye. That's all I'm asking. I'm not asking for a whole bereavement thing. Then what I'm asking of everyone on this call is you should make the phone call. One to two days later. A condolence phone call. Okay. It's very simple. It's Dr. Peter Entebbe. I'm so sorry. I heard what happened to Johnny, Beth, Susie. And I'm calling to offer my condolences. And then you shut up. Right? And so. And then here's a big one. This is hard for my agencies to grasp. Let's send a sympathy card. Right. Why don't we do that? When my dad passed away last year, all my fire department sent me sympathy cards. It was amazing, right? We're not doing well enough in ems. It doesn't take much at all. So. Last comment before I show a video we hear about vicarious grief, vicarious loss, and vicarious trauma. Well, I'm going to throw a new one in here. Vicarious bereavement. If you as the medical director and you can convince a chief or someone to do the bereavement right, then everyone downstream feels that they've done the bereavement too. Even the medic on scene who didn't get a chance to talk to the family member. Let's do this. It will help others, it'll set the tone, and it'll change our departments for the next five to ten years to come. I want to show this video before we end because just to prove you don't have to be on the scene to make a big impact. This is from Pete Souza's documentary on President Obama. Let's take a watch and then we'll end the show. John911, what's the location of your emergency? Sandy hook elementary School, 12 Dickinson Drive. I think there's somebody shooting in here. Sandy Hook School. Somebody's got a gun. I thought it's glimpse of somebody running down the hallway. Okay, they're still running. They're still shooting. There's still shooting going on. Please.

One of the worst days of his presidency was the day of the Sandy Hook Elementary School shootings in Newtown. John Brennan, who at that time was the Homeland Security advisor, was updating him throughout the morning, then finally came in and said that 26 people had died, including 20 grade school kids. He's reacting as a parent more than probably as a president, imagining the horror.

Of kissing your child in the morning, sending him off to school on the school bus, and then only a few hours later, having to identify your child's body, who's been shot multiple times at close range. He felt it was his duty as president to speak to the nation in these times of tragedy. I had never seen him do this before. Blow his cheeks as if he was unsure whether he would be able to keep it together.

The majority of those who died today were children.

Beautiful little kids between the.

Ages of 5 and 10 years old.

They had their entire lives ahead of them. Birthdays, graduations, weddings.

Kids of their own.

Among the fallen were also teachers, men and women who devoted their lives to helping our children fulfill their dreams. So our hearts are broken.

Today we flew up to Connecticut and he spent two and a half hours meeting with the families. This is the Wheeler family, Francine and David. Their son Ben, who was 6, was shot and killed. And their oldest son, Nate, hid in the school supply closet. During the shooting.

We learned that the President was coming.

We waited for a long time because.

The president's people were trying to hurry him through the process. And he said, no.

I will take as long as it takes.

He comes in and. And he made a beeline for Francine.

And he just wrapped her.

Just held.

Her.

Let her, you know, sob into his lapel.

And I asked him, I said, is this different?

And he said, I hope so, but I don't know.

There's no substitute for empathy. It is a foundational relationship between human beings.

And to know that the guy who's running the show.

Cares enough not just to come and visit, but to.

To let you know that he cares about you.

That he cares about your.

Wife.

You know, that he cares about your 9 year old.

K.

We are so good.

At dismissing.

The people that we elect to serve us. We're so good at turning them into things that aren't people.

And we have to be very careful about that, because when you do that.

Then you get the elected officials that you deserve.

I've seen him run up these steps many times.

He didn't run up the steps that night.

I wanted to thank the people here on the screen and I wanted to thank the committee and the NMSP for having me again this year. Thank you all very much.

Thank you, Peter, on behalf of the whole program committee and all of the comments in the chat. Fabulous talk. We are going to have to hold questions. I think we can hold on the ZOOM meeting for just a minute, but we will go ahead and get the next presentation started now. So thank you, Peter, and wonderful job.

Thank you.