Podcast: Play in new window | Download
Subscribe: Apple Podcasts | RSS
Why You Need an Independent Expert and Second Opinion When It Comes to Brain Death Testing in ICU?
Faith: Hi.
Patrik: Hi, Faith. How are you?
Faith: I’m good. My screen name was Rick, so…
Patrik: Fair enough.
Faith: That was my dad with the EEG Electroencephalography .
Patrik: Right.
Faith: They were trying to diagnose him with brain death.
Patrik: Right. What happened in the end?
Faith: They ended up donating his organs or they ended up declaring him brain-dead.
Patrik: Okay. Do you think it was accurate?
Faith: I don’t think so. I’ve been continuously trying to learn more about it since then, and I still don’t believe it. It’s actually the more I look into it, the less I believe that diagnosis.
Patrik: How long ago was that?
Faith: Almost a year.
Patrik: Okay. Do you know if two independent doctors did brain death testing?
Faith: I’m pretty sure. Not officially. He had a large care team. Like two separate neurological experts, or do they have to be specialized in that field typically?
Patrik: They do. They do.
Faith: Yeah. I think there was only one neurologist I noticed on his reports, but he wasn’t even present when he was declared dead.
Patrik: So, it’s only afterwards that you had second thoughts?
Faith: Well, someone had already okayed the donation and all that before I had called. I live in a different state, so it was a little bit harder.
Patrik: I see. You were more or less hands off.
Recommended:
Faith: Yeah, I was able to contact them one time over the phone, and then, I couldn’t get them to pick up the phone after that.
Patrik: Right. You weren’t the power of attorney, so you really couldn’t stop whatever was happening.
Faith: No, but yeah, no. There was dispute over the power of attorney, but the hospital ended up choosing someone who okayed it.
Patrik: Do you have access to the medical records?
Faith: I do. A lot of them seem to self-contradict. I’m trying to see if I can pull it up. I’ve been trying to learn more about what they all mean ever since then, but they also didn’t give us all of the records. I managed to make my dad a MyChart account, and that’s actually how I got most of the most important records. It wasn’t through the record request.
Patrik: How many days passed between ICU admission and your dad being declared brain-dead?
Faith: t looks like it was only a couple hours before they started at least planning for it. Then, it was only three days from admission until they actually did the organ procurement.
Patrik: Three days?
Faith: So, before any of his test results came back. So, it was before they could have possibly known their prognosis.
Patrik: So, we’re talking about hours, not even days.
Faith: That’s what it seems like. That’s based off of one single comment that I noticed in his medical records that said something about one of the family members brought it up, actually, not even the doctors, that he would’ve wanted to donate his organs, but this was when he first barely got to the hospital. But it wrote at the end of the comment, “Coordinating with the organ procurement team and planning on palliative extubation.”
Patrik: Interesting.
Faith: He was originally admitted for a cardiac arrest, but unknown cause of it.
Patrik: Wow. Wow. If there’s a few days passing by and all the tests are being done, fair enough. But it sounds to me like just by what you’re sharing here, it’s all being rushed or it was all being rushed.
Faith: Yeah.
Patrik: Did your dad have an organ donation pass? Was he a voluntary organ donor?
Faith: His license did have the donor sign on it at least, so that’s a little reassuring. But he wasn’t registered in that state. He had just barely moved there, so they still needed the permission from someone to go forward with the way they did, especially to go forward so quickly before they knew the prognosis or the diagnosis.
Patrik: Right. Wow. Okay. Are you seeking any recourse or?
Faith: Yeah. I’m not sure what claim I should be focusing on with that type of issue. Should I focus on the inaccuracy of the medical record? Or because it’s more competitive to get a lawyer to take your case for medical lawsuits. So, I’m not sure what aspect would be the most promising claim.
Patrik: I couldn’t tell you because I am not a lawyer. I’m a clinician. What we could focus on if you wanted some help, we can look at the medical records whether we think there’s any foul play, and then, you can take it to a lawyer. I couldn’t tell you what would be the most promising way to go about it. Where we can definitely help you is looking at the negligence.
Faith: Like the medical standards of care?
Related articles:
Patrik: Yes, medical standards of care. Have there been any issue? It sounds to me like they couldn’t move quick enough if we are talking about hours.
Faith: Yeah.
Patrik: Normally, what I’ve seen when I’ve worked in ICU, if you have someone coming in where there’s a high chance of them being brain-dead, you would still wait two, three days to get all the testing done. Also, make sure the families understand that there’s a process and that there’s due diligence.
Faith: Yeah. I’ve been asking for the hospital policies since it first happened. It’s been almost a year, and they still haven’t let me see that. Even just the hospital policy, which I am pretty sure the U.S. laws regarding organ donation require you to have a specific policy in place that you follow the same way for everyone.
Patrik: 100%. 100%. I’ve been saying this here for the longest, nothing happens in a hospital without a policy. Mopping the floor or cleaning the window has a policy. So, brain death testing, organ donation definitely has a policy.
Faith: This was in Arkansas, so I’ve had to try to catch up with the laws over there because it’s so different from California.
Patrik: Right, right. Yeah. Do you have any other family members that also have second thoughts or is it just yourself that’s digging into this?
Faith: I’d say about half of my family members. Not many of them are totally against the idea of a malpractice suit, but at least half of them are, at least they’re at least not interested in pursuing it. But there’s still a lot of people that fully agree that whatever it is that happened wasn’t right. It’s just hard to grasp what really it was that happened because it’s so confusing.
Patrik: Yeah. How old was your dad?
Faith: He was only 60.
Patrik: That’s not very old.
Faith: Yeah. He had a previous injury from a severe car accident a year earlier, but he was mostly recovered from that at that point. But they tried to use that as an excuse, like, “Oh, he’s been in and out of the hospital all year,” trying to make it sound like he was sicker than he was. I realized this later on, after I reviewed his medical records, and they were just trying to exaggerate his injuries. He had a midline shift in his brain from his car crash, but that had actually improved from his last scan. It was actually the best it had ever been since his car crash. He still had one, which they use it as an excuse, but it had actually gone down by a, I forget what the measurement goes, by a millimeter or?
Patrik: It would be by millimeters. Yeah.
Faith: Yeah. They still never bothered to find the cause of the cardiac arrest event either.
Patrik: Yeah. Because they had other priorities by the looks of things.
Faith: Yeah. The result date for half of his test results from that hospital stay, the last hospital stay, they didn’t even come back until after they had already declared him dead. So, they didn’t even check him.
Patrik: Right. If I may ask, who’s signed off on it? Was it a family member or did they override you as a family?
Faith: Kind of a little bit of both. So, his sister who had been out of the picture for until when this happened, all of a sudden, she was saying that she was power of attorney, and they still haven’t let us see that form though, that supposedly she had. Then, they called. She was the one that I had brought up the idea of organ donation before anyone even asked her, I would assume before most people would naturally think of in that situation. It was so fast. Then, they called my brother, and the problem with that is that they lied to him about my dad’s current condition. They told him he was already dead or that. I forget if they told him he was already dead or already brain-dead, but either way, he wasn’t either at that point.
His death certificate even states, it was like two or three days later, that he was actually declared dead even after they had called my brother. So, they basically said like, “Okay, so he’s already dead, and we just need permission to, if it’s okay, to donate the organs and make some use of it.” That’s how they said it to him. They lied to him, and that’s added a lot of extra trauma to him for him to have to deal with because he feels like he’s feeling some responsibility for it, even though he didn’t have the right information.
Patrik: You mentioned that they said to you or to your brother that he’s dead or brain-dead. Now, in most jurisdictions when someone has been declared brain-dead, in most jurisdictions, they are then also legally dead.
Now, having said that, there was a case in 2013, I don’t know whether you’ve heard of it, seems like miles away now, but there was a case 2013 in California, there was a young girl with a name of Jahi McMath. She was a 13-year-old girl declared brain-dead after a tonsillectomy cuff going horribly wrong with the cardiac arrest and whatnot. The family took that to court and said, “No, we disagree that when someone is brain-dead, they’re not legally dead. We believe that our daughter is still alive”, and so forth. The courts then gave the family the ability to transfer their daughter to New Jersey because in New Jersey, apparently brain-dead doesn’t equal legally dead.
Suggested articles:
Faith: I think that’s the only state that allows a religious exemption.
Patrik: I would assume that family was religious. I would believe so. I don’t know the ins and outs. What I do know is that they transferred her to New Jersey, and she lived there for a few more years before she passed away.
Faith: Yeah, I’ve seen videos of her responding to commands. Yeah.
Patrik: Yeah. So, again, who’s drawing the line what people perceive as being dead when the heart is still beating?
Faith: They’re trying to change the definition or add to the definition again, it seems like, recently. So, it makes, for me, at least after that personal experience, it really feels like every time there’s something that’s outside of the realm of what they’re allowed to do, I mean the organ procurement organizations, it seems like their strategy is just to change the definitions of words or to make up new words until it seems legal or acceptable. Then, they just do it regardless of whether or not the public has approved it or voted on it or whatever.
Patrik: Yep. Changing the goalpost.
Faith: Rather than actually achieving it. Yeah.
Patrik: Yeah. No, I do believe we are on a very slippery slope at the moment as a society and how do we deal with life? How do we deal with death? Especially in those situations when patients are in intensive care. COVID has put a whole different spin on that. People were dying in ICU without families being present. What door did we open there for hospitals to do whatever they wanted while families weren’t… So, we are in a very slippery slope here, I believe.
Faith: Yeah, I think hospital, well, not all hospitals.
Patrik: No, no.
Faith: But at least ones that lack ethics, they saw it as an opportunity for themselves for their personal gain. I mean, the COVID situation. They really have been lawless since then, or at least my experience. Actually, one of the things that I only had one real request when I was talking to them on the phone, which was just let my dad die naturally, please then. They didn’t want to take him off of life support because they wanted to keep his organs viable.
Patrik: Of course.
Faith: So, they wanted to keep him on all the life support and not let him have a natural peaceful death. But at the same time, he’s not worth the extra efforts to save? It’s counter-
Patrik: Double standards.
Faith: It didn’t make any sense that his organs were worth the effort, but he wasn’t. The last things I said before I hung up the phone was, “You have to wait as long as possible,” because they were saying it’s going to happen, they were going to take him to the OR (operating room) within a few minutes when I was hanging up the phone. So, I said, “Postpone as long as possible. At least give me an hour just so I can call my lawyer and consult and figure out what my and my dad’s rights are in this situation.” He was declared dead two minutes after that phone call hang up by a coroner, supposedly.
Patrik: Did you speak to a lawyer at the time?
Faith: No, not that day. I called Adult Protective Services, and then, immediately called the hospital back, but they weren’t picking up calls at that point.
Patrik: Wow. So, you felt like really, it was just slipping out of your hands without any…
Patrik: My goodness.
Faith: Yeah. Then, when I review the law, even the state laws for Arkansas, it looks like the law or like the HHS (Health and Human Services) rules even, it says that the hospitals are required to inform everyone what their rights are when there’s a dispute or something like that. The fact that I specifically mentioned I need to consult a lawyer, I need to know what my rights are and what my dad’s rights are, and they did the opposite, obviously, it’s offensive because this is about a human life and valuing and respecting human life.
Patrik: This is a much wider debate, but I don’t know whether you are aware of what’s happening in Canada at the moment. They are more or less advertising euthanasia if you’ve gone bankrupt, if you are disabled, you can sign up for euthanasia, if you have a mental illness. What happened to personal responsibility? What happened to valuing human life in all forms?
Faith: Yeah. It feels so similar at least to what’s going on here. But yeah, they’re just advertising it like it’s out of empathy.
Patrik: It’s no big deal. No big deal. There’s an app you can book your euthanasia appointment at 10:00 on Tuesday morning. No big deal. We’ll take care of it. That’s where we are going.
Faith: There’s so many horror stories already. Canada, that’s pretty fresh idea over there, isn’t it? Or how long has that been happening?
Patrik: I guess Justin Trudeau, I don’t want to get political here, but Justin Trudeau, like this lefty lunatic in my eyes, woke madness in my eyes.
Patrik: Yeah, I think it’s all Justin Trudeau over there and woke culture. I don’t know, there’s no more God now. Now, we’ll just euthanize people.
Faith: Yeah. The issue that people don’t immediately recognize, I think, is the slippery slope issue that it really is.
Patrik: Slippery slope.
Faith: That it’s not only the people in severe pain that doctors are going to do this to or allow for this to happen to when we legalize it, especially how Canada has done it. The first thing you should make sure are established and in place are the legal safeguards when you’re doing something so risky. That’s the last concern or last priority in Canada, how they’ve done it.
Patrik: also coming back to your situation, it also sounds to me like that was the least of the concerns for the hospital. They just seem to rush from one thing to the next, couldn’t take care of it quick enough. Could they? By the sounds of it.
Faith: Yeah. Well, by the time I called, it was the same day they declared him dead. So, he was already in the hospital three or so days by then. So, they had already gotten approval to do so. They had already planned it, and now, I was coming, and I was probably just annoying to them at that point, coming and being the first one to dispute it.
Patrik: Faith, so from admission to hospital, to your dad being declared dead, how much time did pass?
Faith: He was admitted on July 2nd, and he was declared dead on July 5th.
Patrik: Three days. 72 hours? Wow.
Faith: I thought, is it true, are they required typically to know the cause of death to declare brain death? I thought that was a requirement for brain death in the U.S.
Patrik: That part, I couldn’t answer you. Do you know what’s in the death certificate?
Faith: It says, “Cardiac arrest.” Right above the cardiac arrest, it recommends or it says, “Don’t ever write cardiac arrest,” or, “Never write a mechanism of death as the cause of death and gives the example cardiac arrest as what not to write.” And right below that, they still wrote, cardiac arrest.
Patrik: Doesn’t sound right to me if he was supposedly brain-dead.
Faith: Exactly. The only cardiac arrest he ever had was on July 2nd, not the 5th. So, that doesn’t makes sense. He just happened to have a cardiac arrest two minutes after the phone call hung up? I think because it was a confusing situation, the person who was writing the certificate was probably misunderstanding what was going on, but that’s their job.
Patrik: Yeah. Yeah. That’s very, very sad.
Faith: Yeah. I think the whole issue is also a disability rights issue because of the whole quality of life catchphrase that they like to use a lot and things like that. They assume that they really try to act like prognosis is undisputable, but prognosis is just a guess, and they act like they don’t know that during these conversations.
Patrik: They also act like if someone has a disability because comes out with a disability out of an intensive care stay, they act like, well, their life is not worth living.
Faith: Yeah, exactly.
Patrik: That’s not for them…
Faith: He was physically disabled, like I said, from a car accident, but he still wasn’t sick. Besides the physical disabilities, he had already mostly recovered by then. So, overall, he wasn’t a sick person. Right before the car accident, he was very in like amazing shape, so he wasn’t nearly as bad off as they tried to make him sound. But in their words, just because he was in and out of the hospital, that means he was a sick person.
Patrik: He was very happy to be alive, it sounds like.
Faith: So grateful. It says it throughout his records, and every time he met with an occupational therapist or anyone like that, he would say he would be so grateful they showed up. He’d be so happy to do his exercises and so motivated. That’s the number one thing everyone always said who met him, is that he was so motivated.
Patrik: Yeah, yeah. No, like I said, when I talk to families, when I talk to doctors, they say, “Oh, yeah, this person won’t have any quality of life, so what’s the point?” Well, who are you to make that judgement?
Faith: Yeah. Yeah, exactly.
Patrik: The other question that I always have in a situation like that is what’s the rush in killing people? Where’s the hurry in that? Tell me why.
Faith: It’s like they’re almost afraid of that person recovering.
Patrik: Very much so. Very much so.
Faith: Yeah. His GCS (Glasgow Coma Scale) was a 3 for his last hospital.
Patrik: If it was even a 4, he would not have been brain-dead.
Faith: What about 3?
Patrik: Three might be. A 3 might be brain-dead, but when I say, “Might be,” this is where time comes in. So, there’s plenty of patients in ICU right now, they might have a GCS of 3 because they’re in an induced coma.
Faith: Yeah, exactly. It’s hard to say if they really ever gave them enough time off of the sedatives.
Patrik: Correct. Correct. As soon as you take someone out of an induced coma, if they are not brain-dead, their GCS should improve pretty quickly.
Faith: Yeah. It seems like the protocol they used for they would keep him in medically induced state, like induced coma state most of the time, and then, they would give him a few hours off of the-
Patrik: Sedatives.
Faith: They were using propofol. So, of course he’s not going to respond, but I don’t know.
Patrik: So, are you saying they were using propofol even though he was already declared brain-dead from their end?
Faith: Oh yeah. They were still using anesthetics on him after the declaration of brain death.
Patrik: That doesn’t make sense.
Faith: Yeah. A lot of the medical records don’t totally make sense, and a lot of them contradict themselves. They’ll say one thing, and then, the opposite thing, the next page. So, it seems like a lot of the notes in there, or at least some of the notes in there, seem to be haphazardly just written in to compensate for not having a diagnosis and things like that. I don’t know. Because for example, I think they tried to blame it on a lactic acidosis, his state he was in, but that doesn’t make sense because he had an acute kidney injury. His kidneys were working fine before then. So, my understanding is lactic acidosis takes a while for the acid or buildup of material from your kidneys not functioning. It has to be chronic kidney failure.
Patrik: Look, there’s other things that could lead to lactic acidosis too, including electrolyte imbalances, which is not uncommon for patients in ICU.
Faith: Yeah. He also was on a lot of medications still, so I don’t know how much that affected it.
Patrik: Yes, most likely. Most likely. So, what are your next steps? Are you considering a medical record review or are you just trying to get more information?
Faith: Yeah, well, before I had all the records, I had ordered a medical review from your company, but it was a lot of guessing even at that point because we didn’t have a lot of the medical records yet, or we hadn’t found a lot of them yet. But I was considering possibly paying for one-on-one consults, like preparing all the records. Now that I’ve had a lot of time to study them, instead of just paying for another review of the records, I was thinking about maybe instead, scheduling a one-on-one consult after I put together which records I think are most important, or at least which ones I have questions on still specifically.
Patrik: Right, right. Sure. Yeah. Now, I remember now, Faith, of course. We’re talking to so many clients, I do apologize. I do remember we were reviewing earlier in the year.
Faith: Yeah. I called you, I think, the week after it happened.
Patrik: Right. Yeah. Do you know the volume of the medical records? It can’t be that big if it was only for 72 hours.
Faith: Yeah. Well, it’s a pretty big stack overall just because we have the whole previous year worth of medical records too, just to compare to see the validity of his medical condition, of the prognosis to see and to try to figure out what caused his cardiac risk. But it’s only, I think around 2,000 pages if you include all the nurse’s notes and whatnot for the last hospital stay. But a lot of his appointments from his car accident injury were at the same hospital that he ended up dying at. So, some of the records are kind of mixed.
Patrik: Right. I see. 2,000 pages just for the 72 hours?
Faith: Well, I think that document includes pages from earlier in the year too.
Patrik: From earlier, yeah. It sounds too much like 2,000 pages.
Faith: Yeah. I had to combine the nurse’s notes document, which was I think at least 100. Then, the one that the hospital actually gave us, which was like 700. So, maybe it’s more like a little over 1,000, probably just if it’s only for those dates. But what kind of labs are usually important for them to track in those situations?
Patrik: In a situation like that, they would need to look at all the pathology results starting from full blood count, like hemoglobin, white cell count, electrolytes, but also, like coagulation. Do you know what I mean with coagulation?
Faith: Yeah. He did have, it said, “Delayed clotting time,” or PTT. It would take too long to clot.
Patrik: Yeah, yeah. Things like that. They would have to look at every little detail because you would want to find out why did he have a cardiac arrest? Also, if he was going for organ donation, again, you would need to look at the clotting time and all of that. What’s the risk? Would an organ potentially bleed out by taking it out if the clotting time isn’t right? Things like that all need to be considered.
Faith: Yeah.
Patrik: There’s nothing they shouldn’t really be looking at.
Faith: Yeah, we have the hepatic panels, and kidney panels, and all that.
Patrik: Absolutely. All of that. They would’ve looked at hepatic and kidney, especially with the view of organ donation or organ donation. Did they donate kidneys and liver?
Faith: I’m not sure totally everything they got. Well, I don’t know. Because if he had kidney and liver damage, then I’m not sure what would even be useful because when he had the car crash, he had a collapsed lung, so they’re not getting the lungs out of it either. I don’t know what they were trying to get.
Recommended:
Patrik: Right.
Faith: I know they took his corneas, and some skin grafts, and bone marrow or something.
Patrik: Okay. Faith, I do need to wrap this up. I usually only have an hour to go. If you wanted to continue the conversation, you know how to get hold of me or if you wanted us to look at medical records. I really appreciate you sharing your story publicly with our audience. I think it is really important that if you are in a similar situation, that you try to put a stop to it as quickly as possible because from hearing your situation, they couldn’t move quick enough, by the sounds of things, which is horrible.
Faith: Yeah, it seemed like almost hearing my disagreement with them moving forward with it seemed to rush them even faster. They started moving forward even faster. As soon as I called, it seemed like, as soon as they knew there was a dispute. But yeah, thank you so much.
Patrik: No, thank you, Faith, for sharing. If we can help you with a medical record review or with anything else you need, you know how to get hold of me.
Faith: Okay. Thank you.
Patrik: Thank you so much. Have a wonderful evening. Thank you.
Related Articles:
Quick tip for families in ICU: You are 100% in control of how you respond to the challenges!
Quick Tip for Families in Intensive Care: How to Handle my Wife’s Setbacks in ICU After Day 70!
Quick Tip for Families in Intensive Care: My 68-year-old Dad had a Pulmonary Embolus (PE), He had Thrombolytics, Followed by a Hemorrhagic Stroke, Help!
Quick Tip for Families in Intensive Care: Ventilator Removal vs Tracheostomy on My Dad Who Has Passed Spontaneous Breathing Trials!
2nd Discharge to LTAC from ICU, the Madness Continues! Quick Tip for Families in Intensive Care!