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Hello, and welcome to the Gifted Life Podcast where we have conversations about organ tissue and eye donation. I'm Maurice Dio. I'm Joey Boudreau. I'm Sally Centry.
And look, today we are going to be talking about something that we get lots of questions about. We have an expert that will join us today. We certainly do, and she's going to shed some light on something that's so useful to everyone listening and that's served to save more lives. And we'll also talk to a donor mom who has lived through it.
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All right, guys. We told you there's something that we get lots of questions about. So we had to bring in an expert out in the community. We talk about donation.
Folks are signing up, which is good. But the one thing that folks in my experience have a hard time grasping, understanding, and that is brain death. Even our donor family say at that moment, I had never heard that term brain death. So it was hard for me to grasp.
It was hard for me to make a decision about donation. So we want to give you all the information right now. Yeah. And brain death, of course, is something that we've talked about in previous episodes, one of our first episodes actually.
We talked a little bit about it, but now we've got an expert. Yes, Dr. Amy Eizen. And she is the director of Neuro-Critical Care at Tulane University also serves on our LOPA Advisory Board.
And from what I've heard, it was one of the best explanations of what brain death is. Yes, she's done seminars and she's spoken at conferences actually one recently in Tampa or donor alliance, which is a national conference. Dr. Eizen, thank you for coming on.
Thank you for coming on. So I'm going to give you the first question. That's a real softball question. What exactly is brain death?
So that's not the softball question. I'll ask you about the communication. That's a lot of complications in that. Yes, it's complete irreversible cessation of all brain function.
And that definition has stood the test of time for what we want brain death to be and how we measure that has changed since the 1960s when brain death was first described. The absolute definition is complete irreversible cessation of brain activity. And what that means is that the brain has stopped and will not restart. And it's exactly equivalent to cardiac death, meaning when your heart stops beating, you are declared dead in the same way when your brain stops all activity and it will not restart than you are brain dead.
All right. So that whole moral ethical question of are you your body and are you your brain, of course, you know, with your brain not functioning, even if your body is still functioning, you are legally dead just the same, right? And it is equivalent. If your heart stops, there is no longer perfusion to the rest of the body.
If your brain stops, there can no longer be any interaction with the world and in the same way you are equally dead. So you mentioned the 1960s. So why is it such a, I guess, a recent diagnosis, comparative to other diagnosis, of course, cardiac death and everything else? So in the 1960s, we had actually in the 50s, we had development of a variety of ways to keep people who were otherwise going to die alive.
For example, CPR was developed in the 50s and has been revolutionized as the short amount of time since the 1950s. And in the 60s, we started having some of these patients who had been resuscitated from the heart perspective with their heart beating, not regaining full neurological coverage. And we also had development of mechanical ventilation. And mechanical ventilation was originally developed for polio, meaning that's when you're on a breathing machine on a ventilator.
So the machine is breathing for you. And without that machine, a lot of people would have otherwise stopped breathing and their heart would have stopped beating and therefore they would have been declared cardiac death. But in the 60s, and especially through the course of the 70s, we developed ICU, our intensive care unit that allowed us to put people on life support or mechanical ventilation that helped them to breathe. But their brain would not recover.
And so in 1967, Harvard Medical School created a statement about what brain death is and they included those words that I've already used, which is irreversible cessation of brain activity. Their definition was pretty close to what we have now when we consider other evolutions in medicine since the 60s to now. That definition is pretty close and has only been slightly modified. The latest modification was in the 90s.
And with the modification in the 90s, we revisited it in 2010 and have not made any changes at that time. So what are the biggest challenges in doing the testing of brain death and trying to figure out if a patient is brain dead or simply in a comatose state? So the most important thing when making this declaration is being systematic and thorough. And so every time I declare brain death, I pull out a checklist and go through very specifically on what otherwise been a neurologic exam.
And so that includes when we shine a light in people's eyes, do their pupils constrict? Or if we touch their eyes with a piece of cotton, do they blink? And that's called a corneal reflex. Looking to see if we put the breathing machine, suctioned, catharthed down deep into the lung, do they cough to try to get it out?
And going systematically through those layers to see if there's any activity whatsoever in the brain stem. I think one of the biggest challenges, honestly, is when people are very sick, sometimes their body cannot tolerate all the tasks that we're about to perform. And being sure that they're safe enough that their heart can continue to beat throughout the examination is really probably the biggest challenge, but otherwise being extraordinarily specific and detail-oriented and methodical in the examination. So working with families and family services with LOPA, we hear one of the biggest, I guess, I don't know if it's a challenge or one of the biggest difficult things to understand is exactly what brain death, what constitutes brain death, and of course you did a great job explaining it to us here.
Are there certain words, terminologies, or different things that you do to help family understand brain death? Yeah, so I invite families to be present for the examination. I think that you can hear all the words in the world, but when you see someone go through this examination and you understand if someone is checking the people that are responsible for your loved one and you can see it as well as the physician can see it, that it really does help people to understand what we mean when we say it is not present. We say this irreversible, complete cessation of brain function.
And especially one of the last tests that we do as part of the systematic examination of a patient who's neurologically injured is to see if they can breathe independently. And that's called the atnea test. And so what that entails is stopping the breathing machine but leading the breathing tube in place. And so we put oxygen through the breathing tube that will support their oxygenation, but they then remove the breathing machine from the tube.
There's just a piece of plastic connector. And when we take that off, we expose the chest and watch for breath. Without breath, we are not alive. And when you see that the brain generates breath and is no longer doing so, it is really much more easy to understand that the person cannot recover and cannot survive without a breathing machine.
And we have a donor dad who expressed what you just expressed. And so he said, I had to be in the room. I had to watch those tests and they did everything they told me they were going to do. And brain death was declared.
He said I understood it better. But he said before that the only education he had on brain death would be TV show or a sci-fi show that maybe didn't do donation justice because of the way it was portrayed. It's not in the community. We deal with those negative forces in that way.
And along that same line of talking about this, we follow up with all of our donor families. And many times we'll get a family sing. But you think that's really what happened? Maybe I just didn't understand it correctly.
And maybe I said yes too soon. How would you respond to that sort of comment by family? So when there's any traumatic event, whether it be the loss of a loved one or a car accident ourselves, a lot of the details are sometimes lost in memory. And even if we have a fairly good understanding before or even after the event, that event is often blurred by our emotional responses, which I think is protective in a lot of ways because we don't want to remember those hardships with the clarity all the time.
So I think that some of those challenges and understanding or thinking that you were right in the moment and then regretting it later, I think that challenge happens to be a protective part of recovery. But working through that and having a conversation with either the physician who pronounced them or someone else about that interaction about what actually happened I think is important for your own brief process. So once brain death has established something that we've talked about in previous episodes, it is a very, very separate thing from donation. We've had situations where some families have been offered the opportunity to donate basically at the same time as the brain death explanation itself.
What do you say when you hear things like this? So I have a very deep in the separation of the process of declaration of brain death and deciding to be a donor. For me, I'm losing a patient. I understand the family's losing their loved one, which is obviously more traumatic than me losing a patient, but my obligation and my duty is to that patient and that patient alone.
There is a state stature that anyone who is involved in the transplant process cannot be the declaring physician. So there's already a law that says that we have to separate these things in time and space. In my practice, obviously we want to get a little bit involved so that they can know if they're the potential donor candidate and which families can be approached. But that should be separate from the declaration of the treatment of that patient.
I think it helps people to understand that we're trying to help their loved one and when we can no longer do so to help that person gain meaningful recovery and to live the life that they want to live, then this is an option to be a giver in the process of donation and a transplant and give other people the opportunity to survive an otherwise life-threatening condition. That's pretty powerful. We appreciate you explaining it on our level so that we can understand. If folks want more information, they heard some of what you said.
They want to go and dig around a little bit. Where would you send them? So the American Academy of Neurology has developed a practice parameter, which is the guideline statement that we follow as neurologists and as physicians to help declare people who have had brain death. And this is the guiding force that we use in our practice and there is patient and family information available through that website, which is www.an.com.
That's AAN.com. Thank you, Dr. Isen. And we would like for you to hold on.
We're going to put you in another segment of the gifted life. We get questions in and this one is for you. It targets brain death and we'd like for you to answer that question if you can hang on the line with us. All right.
More of Dr. Isen to come. Okay, guys. So we got the clinical side.
What is brain death? Now we're going to turn it to a new perspective or bringing in an expert, if you will. And she helps us learn a lot from day one for me. This is Libby.
Libby lives. We love her, right? Donor Mom. She's part of our Lopa family and Justin is her heart.
He was a hero, right? Yep. And of course we all know and love Libby. She's been a mentor of mine for 15 years and Libby was one of the first people, even though she was a lay person that really explained to me what brain death was, you know, hurt not being, you know, clinical, but getting her perspective was just amazing.
Yeah. And she introduced me to organ donation. I signed up because of this lady had tears on the sheet and we all have a connection to Libby. Well, my connection, I think, is a little bit different than you all of the fact that Libby and I, she came to work just a few months, I think, prior to when I did, even though she had been volunteering.
But as we got to know one another and Libby would share her stories, there you go Libby, about Justin with me. As time went on, I thought this would be great to have this lovely lady working with me. So rather than go on and on, I'd like to introduce Libby Harrison to everyone. Hey, Liv.
Hi. Hi, everybody. How are you? Good.
We are so glad that you're here. Obviously we have love for this woman. Our heart goes out to you. But we all first knew you as Libby.
Donor Mom. Mom of Justin. For those of you who hadn't heard on an earlier podcast, I used to be in the news field. And this mom about a year after that death, when her son became a hero, would just come and sit and she said, I just want to talk about donation.
If there is time on that new set, I'm going to talk about donation for folks to understand, I want to do it. And I felt that passion and she just drew me in. But Libby, we're talking about brain death. We're talking about folks saying, yes or no to donation.
And you have a different perspective. I mean, you are a donation advocate folks across the state and beyond. Know you know what you stand for. But tell us the beginning of Libby's story.
It's almost 20 years ago, between 20 years and August, that I heard the words brain death for the first time and not in a comical sense. Or someone losing a thought process. I learned what brain death truly is. My son was in an accident.
He fell out of the back of a non-moving pickup truck. But the kind of dad and I got to the emergency room, they just brought us in this little room. You know, mother of five, he was the youngest. I've been in the ER a whole lot of times, but I've never been escorted into the little room.
So we knew it probably wasn't very good. And fast forward, I have no idea how much time passed. But that position opened the door. Didn't take his hand.
And he said, Justin's not going to survive this. You need to think about organization. So I fired him. I just thought if there's something wrong with my son, my heart would know it.
I would feel it. And then I demanded to see Justin. We hadn't even laid eyes on him yet. So when you're told that somebody you love is not going to make it, you have this vision.
I mean, I guess everybody has a vision in their mind of what death looks like. Well, when I walked into that trauma room, that didn't look like death to me. I mean, my son was beautiful. He was not got a little bubble on his forehead, just minor.
They were breathing for him, begging him. But he was warm. And his chest was rising and falling. And I just don't have a whole lot of memories of those particular moments other than there was a female nurse in there.
And I just looked at her and I said, how could he be dead? He's warm. And she didn't say anything. She'd just look on her face with tears.
And I probably knew at that moment, but I wasn't going to give up. So I sat forward again and then they take into ICU and by this time he's on the ventilator, but still warm. And that monitor is beeping and is hard. I can see the rhythm of his heartbeat.
I think they mentioned donation to me three or four times and I said absolutely not because I could not comprehend that as death. Eventually someone spoke to me about brain death in layman's terms and helped me understand brain death that yes, Justin's heart is still beating, but this machine is making him breathe. And as long as your heart is getting oxygen, it's going to beat. And they were given him vitamins and fluids and they were trying to give me time with my six to one baby.
At what point do you think thinking back, did you finally understand and come to terms with the fact that he was gone and even though he was warm and even though the heart beats were there, but in fact he had passed. It was many hours into the night, but I remember and I spent many hours on my knees praying for a miracle. And I don't know. There was just something that came over me and I was holding his hand and talking to him and just I just believed him.
I don't know what it was. I think it was him giving me enough time to absorb everything they were saying and it sort of began to make sense because there was no response from Justin. It didn't matter what we said, how we kissed him. It didn't matter.
There was no response. At that point I think it's when I started asking about donation because I was terrified of that as well because I knew nothing. But we did finally say yes and my son saved my life and gave sight to two. I met his heart recipient and after we became very good friends after a few years, she always kind of expressed a guilt that she felt because she was alive and a beautiful teenage boy was not.
And I think when I got better, not okay, but I think what softened my grief journey the very first time was me looking at her and saying and meaning it. Marilyn, if I had said no to donation, I still would not have just been. I think that's really when I realized what brain death was. It is death.
You know, Lib, you and I, we've had a lot of conversations like this and both working in family services, working with families. Do you think that one of the main reasons that families say no is because of that part to understand part? Oh, I think it's the timing of notifying the family of brain death, the words that you notify them of brain death, it needs to be for lack of a better way. It needs to be dumbed down because most people are not clinical and most of all they got to have time.
In that night when I began to trust these people, these nurses and doctors, I began to trust them is when it got okay to say yes to donation, but it's the timing and the words used. And you know too, Libby, you and I talked to a lot of families and there's been a number that I know you've also spoken with that has said, you know, I've really had second thoughts about this. So you know, if people are having second thoughts, even though they've said yes, the difficulty then of people going, I just don't want to do this because I don't understand it. I'm just heartbroken.
I'm so confused at this point. It's very difficult for probably any of us to find the right words that could have convinced you or anyone to say yes to this if you didn't have the understanding and that's difficult for everyone. And I think you've explained that very well. Well, it is very incomprehensible if you've never heard of it or never witnessed it with somebody you love because they are warm and the body is in my mind.
He was alive and talking about donation before I believed that. I'm glad I finally said yes, but I don't even really know how to say it. Other than knowing I know what Justin wanted to see it told me. Now, you know, what we see in the clinical setting in the hospitals I see used more often is that the critical care physicians will bring the families in the room during the brain death exams so that they can see for themselves whether it's the blood flow and explaining to them that look, you know, this is where the blood flow would be, you know, and here's where it's not or if it's just situations of explaining the brain death exam because it's, you know, as we heard earlier, it's a lengthy exam so that they can have a better understanding so that they're not put into situations like Libby was and like many people were, you know, quote unquote back in the day, you know, it's a better job now.
I agree. If they had said look, come in here, we're going to go. We're going to do an examination to determine whether or not Justin's brain is functioning. If they would have let me or offered it was never even offered.
Because these are total strangers. It's not like my family doctor was there. If they had said come, observe, tell us even, you know, it probably would have been less lengthy getting to the acceptance of death. Libby, when you mentioned about Justin letting you know that's what he would like to have happen if this should ever occur for him, you know, for people to be able to discuss donation with their family and friends is so extremely important.
I'm sure that helped to some small degree knowing you had fulfilled his wishes. Absolutely. I'm not sure I would have said yes if I didn't have that knowledge and those words I can steal to this day here and say if anything ever happens to me, I want to be a donor. Good for him.
Good for you. And he's a hero. We still tell his story today and you can hear Libby's passion. She draws you in and she pushed for more education just across the state.
So if you go to our website, Libby.org, you can request a speaker if you're in the state of Louisiana. If not, we suggest you work with your organ for your agency where you are just to spread the facts. Get the words out there. Let's have a healthy conversation about donation.
And that's one of the reasons that we do this gifted life podcast. We hope that you share at least this episode. It's where the word make life happen. It's that time in the podcast where we pause to honor a hero.
Today's hero, Major Earl Jenkins. Major Jenkins was a loving and kind man. He lived life to the fullest and he tried to be the best in everything that he did. Major was a carpenter.
He loved to build things with his hands and he was good at it. He was a hard worker on the job and off the job. Major was a lot of things to a lot of people. Major would give you his last if you asked for it.
Major did not have any kids, but he loved children. He wanted his nieces and nephew to be the best at everything they tried to be. He also has a goddard that he loved dearly. He loved the Saints and he loved Southern University football.
Major is still sharing with others in his death by being an organ donor. And you can see his picture. Learn more on our heroes page at lopa.org. At this point, we're going to pause and say thank you to Major Earl Jenkins for the gift of life.
In our question and answer segment, we are bringing in Dr. Eisen from earlier in the podcast because this question I think was written or heard of answer. So the question that came in is, is brain death recognized in all 50 states? So brain death is recognized in all 50 states and around the world too.
So for the United States, I mentioned that American Academy of Neurology, which is our practice parameter and guidelines that we use as neurologists. And it's not the law that is recognized in all 50 states. There is a legal obligation to remove people from mechanical ventilation after the declaration of brain death in all 50 states except one, which is New Jersey. But otherwise it is our legal obligation to actually remove people off of mechanical ventilation after a designated amount of time in 49 states.
Well, that's fantastic here around the world. There is a single standard. I mean, that is just phenomenal. That just doesn't happen, does it?
Because it is a guideline and consensus statement, not all hospitals follow it exactly to the letter and that gets to be a little confusing. The reason why is because each hospital has its own culture and who can declare people brain death, for example, can shift between hospitals in all 50 states. It has to be a licensed physician. In hospital policies, for example, some places are academic institutions that have residents are bellow to wearing training, physicians and training.
And so whether or not they can participate is designated through hospital policy. Other limitations expand for the practice parameter on things like the practice parameter states, there should be no severe electrolyte abnormality or disturbance. And some hospitals have designated what that might be. For example, if the sodium is too high, they may not be able to declare brain dead in certain hospitals, but can be in others.
So there are some tweaks in the policy or in individual hospital policies compared to the practice parameter, but overall it is a guiding statement. All right. And if you have questions about this, you heard something that spurs another question right to us at info at lowba.org. Thanks, doctor.
Thank you. Thanks for having me. What a power packed episode with the gifted life. A must listen full of information.
We certainly want to thank Dr. Amy Izen for coming on and giving such a wonderful presentation on brain death, the challenges and everything in and out about it. Yeah. So a lot of people can use that information just across the board and a special thanks to Libby for sharing her perspective about brain death and why she ended up saying yes to donation and why she continues to help save more lives.
It's pretty powerful. Hopefully we inspired you. You want to sign up to be an organiantician donor because you haven't already registered me.org as a one stop shop. Doesn't take a lot of your time, but man, the legacy that you can leave.
And listen, we hope that you go out today and do something that you don't normally do to help us make life happen. This is a production of the Louisiana Organ Procurement Agency or LOCA. The gifted life is hosted by Lori Steele, Joey Buudrow and Sally Gentry. Our producers are Kirsten Hines and Shalom Caraway.
We are recorded, engineered and mixed in our Metery, Louisiana studio by Troy Perez.