Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!

This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was

My Dad is Critically Ill in the ICU & How Long Does it Take for Him To Be Weaned Off the Ventilator?

You can check out last week’s question by clicking on the link here.

In this week’s episode of “YOUR QUESTIONS ANSWERED”, I am here with a live stream today, where I want to answer your questions if you have a loved one in intensive care. And this is one of the most commonly asked questions for families in intensive care and it’s a question that we get all time. And today’s live stream is about Did My 23-year-old Son Die of COVID-19 ARDS Due to Lack of ECMO Support? Live Stream! 

Did My 23-year-old Son Die of COVID-19 ARDS Due to Lack of ECMO Support? Live Stream!

Hello and welcome to another intensivecarehotline.com livestream and I’m your host, Patrik Hutzel of the Intensive Care Hotline. Today’s topic is, “Did my 23-year-old son die of COVID ARDS (Acute Respiratory Distress Syndrome) due to lack of ECMO (Extracorporeal Membrane Oxygenation) support?” Now, this is a very hot and also timely topic as we’re still in the middle of a pandemic, of a global pandemic, I should say, of COVID-19. And today’s topic is about really, “Do COVID patients die, or are they actually dying because of a lack of ECMO support?” And for those of you that don’t know what ECMO is and how it ties in with COVID-19 and COVID-19 pneumonia and COVID-19 ARDS, I will elaborate on that as we go along.

First, some quick housekeeping issues. Please type your questions into the chat pad. If you can keep them to the topic, that would be great, of today’s topic, that would be great. If they’re not on today’s topic, just type them in, and I’ll get to answer them at the end of the session.

So, before we go into today’s topic, you might wonder what makes me qualified to talk about this topic.

What makes me qualified to talk about this topic? I have worked in intensive care for over 20 years in three different countries, and I have looked after many, many ECMO patients pre-pandemic, but I still believe that I have lots of insights that I will tell you in a minute why. Out of those over 20 years in ICU, I have worked for over five years as a nurse unit manager in intensive care. I’m also the founder of Intensive Care at Home, where we provide intensive home care services for long-term intensive care patients, predominantly on ventilation with tracheostomy. I’m also the founder of intensivecarehotline.com, where we professionally consult and advocate for families in intensive care all over the world, but predominantly in the United States, Canada, Australia, U.K., Ireland, and New Zealand, predominantly English-speaking countries. And we have helped hundreds, if not thousands of families all over the world in intensive care to improve their lives. So, that’s a little bit of background about me.

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So, what sparked me to talk about today’s topic, as you can imagine, over the last two years, we have been helping many countless families all over the world who had their loved ones in intensive care with COVID-19. Most of the time their loved ones were in ICU with COVID pneumonia, COVID ARDS. ARDS stands for acute respiratory distress syndrome, also known as lung failure. Many patients in intensive care ended up with COVID ARDS, and ARDS was pretty bad before COVID. Anyone in ICU with ARDS was one of the sickest patients in any ICU, and had a fairly high mortality rate, and you can imagine what that looked like with COVID.

So, as we were professionally consulting families over the last years, specifically with COVID and COVID ARDS, and COVID pneumonia, there would’ve been countless of those families where we suggested early on that the patients would’ve been a candidate for ECMO. What is ECMO? ECMO stands for Extracorporeal Membrane Oxygenation. It’s basically a bypass machine that can take over the function of the heart and the lungs for a period of time. Why is this important? It is important because if someone is in lung failure or pneumonia, that is resistant to treatment, what do you do next? Many patients with COVID they started being proned. They were basically turned on their tummy for 12 to 16 hours to help the lungs inflate, and also help to drain secretions from the lungs. When I first started in ICU over 20 years ago, I have seen this with ARDS on a regular basis with very good effects, the proning in particular.

Now with COVID ARDS, for some patients, proning has been efficient, for others not so much. And where proning hasn’t been efficient, those patients should have been referred onto ECMO. If someone is on ECMO, two big cannulas get stuck into the veins, and then blood is oxygenated in the ECMO machine, and oxygenated blood is reinfused into the body. That’s how it works in a nutshell. It’s not as simple as that, but you get the gist, and carbon dioxide is removed in the machine as well.

Now, before the pandemic, before COVID-19 was a thing, there was a shortage of ECMO beds all around the world. So, why was there a shortage? Well, because intensive care is such as a niche, and staff working in intensive care, doctors, nurses, physical therapists, physiotherapies, allied health, you name them, need to go through special training. So, it was fairly hard to become competent and confident in ICU, because it took such a long time to train staff. So now, if you are competent working in ICU, now you could almost become even more specialized, i.e., you or for lung failure.

The problem is that not every ICU has ECMO. So, if not every ICU has ECMO, that means not every ICU has ECMO-competent staff. So, only very few ECMO centers have ECMO machines and have staff being competent to look after patients on ECMO. So, that narrows down the field straight away where ECMO beds are available. Now, you can imagine, most COVID-19 patients going into ICU with COVID pneumonia, COVID ARDS, that would be a high percentage of them needing ECMO. And often, when we have professionally consulted and advocated for families and we suggested ECMO to the ICU, they were always making excuses saying, “Oh, this person is not a candidate for ECMO.” But I questioned that always, because simply I know the exclusion and inclusion criteria.

And one inclusion criteria is for example age, a patient’s age. And we’ve consulted many, many clients that had young family members in ICU with COVID less than 65 years of age. Normally, the ECMO cutoff is 65 years of age, but we had many clients that were in their 30s, in their 40s, in their 20s, like the title of today’s session suggests. And the title of today’s session again is, “Did my 23-year-old son die of COVID ARDS due to a lack of ECMO support?”

So, with all this data that we were gathering that ICUs were refusing for patients to go on ECMO, even though they had ECMO available in their ICU, or (B), they refused to send them to another hospital where ECMO was available, or three, they tried to refer to another hospital with ECMO, but then the other hospital or the other ICU refused and said, “Oh, this person is not a candidate”, which in hospital speak means, we don’t have any beds, we don’t have any staff, we don’t have the resources to take on another patient. But they can’t really say that, because that would show a failure of the health system, and that would not be good publicity. But the reality is, we have all seen now, all around the world, that the health system in the last two years has come to its capacity. Not enough doctors, not enough nurses, not enough beds, not enough equipment, not enough specialist staff to look after all these patients in ICU, not enough specialist staff to look after ECMO. Again, ECMO is like a niche within intensive care. Staff needs to go on courses, need to be trained, need to have hands-on experience before they can be competent to look after ECMO.

I’ll give you some numbers to illustrate that to you. The last ICU that I worked in was a 45-bed ICU, and that ICU had ECMO, so I was looking after ECMO patients there as well. And we had, I’d say on average, five to six out of those 45 beds were ECMO patients. Definitely, the number was slowly but gradually going up, but there were only a few handfuls of staff that could look after ECMO, because again, intensive care is a specialist skill. Looking after ECMO within intensive care is an even more specialized skill. So, we were constantly grappling for staff that could look after ECMO, and the number of ECMO patients was constantly but slowly going up, and then the pandemic hit.

Suggested Links:

• My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she survive? (PART 1)
• HOW LONG Can A Critically Ill Patient Stay On ECMO?
• “PEACE OF MIND, CONTROL, POWER AND INFLUENCE EVEN IN THE MOST CHALLENGING OF CIRCUMSTANCES THAT YOU, YOUR FAMILY AND YOUR CRITICALLY ILL LOVED ONE COULD POSSIBLY FACE IN INTENSIVE CARE!”

And at that stage, I wasn’t in ICU. I wasn’t working in ICU anymore, but obviously, I have friends and colleagues that are working there still, and they were telling me, all of a sudden, we went from five ECMOs out of 45 beds, to 20 ECMOs out of 45 beds. And my first question was, “Well, where do you have the staff coming from?” You wouldn’t have all of a sudden 20 ICU nurses on shift that could look after ECMO. They might have done some fresh courses for staff, but even that would’ve been difficult, because you couldn’t do the training days anymore, because of COVID restrictions and whatnot. And even though I’m sure some ICUs have increased their ECMO capacity, it just wouldn’t be enough to look after all patients worldwide that would need an ECMO bed when it comes to COVID ARDS and COVID pneumonia.

Now, so clearly the data that we were seeing on a day-by-day basis here at intensivecarehotline.com suggested that there weren’t enough ECMO beds, and that families were being told, “Oh, your loved one is not a candidate.” Even though I clearly remember we were working with this one client who was a 32-year-old young man in ICU with COVID ARDS. He was being proned, he was on 100% FiO2 (Fraction of Inspired Oxygen), he was paralyzed, chemically paralyzed. He was on inotropes, vasopressors, the whole nine yards, and he was being refused to go to another hospital where ECMO was available, because the other hospital said, “Oh, well, he’s not a candidate for ECMO.” And if a 32-year-old male or female, doesn’t matter, is not a candidate for ECMO, how would a 65-year-old patient be a candidate for ECMO?

So now, why am I telling you all of this? A couple of weeks ago, I saw through one of my email newsletters that I’m getting about intensive care, that basically what we were seeing and what we were telling families, it has been confirmed. What has been confirmed, is that a study shows from Vanderbilt University, a study shows, “Young, healthy adults died from COVID-19 due to ECMO shortage.” Who would’ve thought that? Well, we knew that all the way along, because that’s what we were seeing all day, every day when we were helping families in intensive care during the pandemic. And I’m glad somebody actually did a study about it.

So, I would argue pre-pandemic, a 32-year-old with ARDS would’ve been referred to ECMO, no problem. I want to read out excerpts of this study, and then I want to break it down even further, and I will also link to this study below this video after it’s been uploaded.

I’ll read this out by Craig Boerner, “Nearly 90% of COVID-19 patients who qualified for, but did not receive ECMO, due to a shortage of resources during the height of the pandemic, died in the hospital despite being young with few other health issues, according to a study published in the American Journal of Respiratory and Critical Care Medicine. The Vanderbilt University Medical Centre study led by Whitney Gannon, Director of Quality and Education for the Vanderbilt Extracorporeal Life Support Programme, analyzed the total number of patients referred for ECMO in one referral region, between January 1st, 2021, and August 31st, 2021. Approximately 90% of patients for whom health systems capacity to provide ECMO was unavailable, died in the hospital, compared to 43% mortality for patients who received ECMO, despite both groups having young age and limited comorbidities. “Even when saving ECMO for the youngest, healthiest, and sickest patients, we could only provide it to a fraction of patients who qualified for it.”, Gannon said. I hope these data encourage hospitals and federal authorities to invest in the capacity to provide ECMO to more patients. Once a patient was determined to be medically eligible to receive ECMO, a separate assessment was performed of the health system’s resources to provide ECMO. When health system resources, equipment, personnel, and intensive care unit beds were not available, the patient was not transferred to an ECMO center and did not receive ECMO. Among 240 patients with COVID-19 referred for ECMO, 90 patients or 37.5% were determined to be medically eligible to receive ECMO and were included in the study. The median age was 40 years, and 25 were female. For 35 patients, or 38.9% the health system capacity to provide ECMO at a specialized center was available for 55 patients or 61.1%. The health system capacity to provide ECMO at a specialized center was unavailable. Death before hospital discharge occurred in 15 of the 35 patients, or 42.9% who received ECMO, compared with 49 of the 55 patients, 89.1%, who did not receive ECMO. Throughout the pandemic, it has been challenging for many outside of medicine to see the real-world impact of hospitals being strained or overwhelmed, said co-author, Matthew Semler, MD, Assistant Professor of Medicine at Vanderbilt University. This article helps make those effects tangible. When the number of patients with COVID-19 exceeds hospital resources, young, healthy Americans die, who otherwise would have lived.”

Now, this is obviously an American study, but I can assure you that we have seen similar issues here in Australia, in the U.K., or in Canada, because we’ve been professionally consulting and advocating for families all around the world during the pandemic.

“In total, the risk of death for patients who received ECMO at a specialized center, was approximately half of those who did not. Because some patients die despite receiving ECMO, there has been debate about how much benefit it provides. This study shows the answer is a huge benefit, said senior author, Jonathan Casey, MD, Assistant Professor of Medicine at Vanderbilt University. “This data suggests that on average, providing ECMO to two patients, will save a life and give a young person the potential to live for decades.”, he said.

So, I think that just confirms what we’ve observed over the last two years, and where we constantly said to families, “Well, this is not so much that your loved one isn’t a candidate, because your loved one would’ve been a candidate before the pandemic, because the beds have been there.” Now, here is what the study leaves out. For example, for someone going on ECMO for ARDS or lung failure or pneumonia, it can be used for as a bridge to a lung transplant, ECMO for lung failure, but also for heart failure, but today we’re focusing on lung failure predominantly, can be used as a bridge to a lung transplant.

What does that mean? So, now you’ve had, during the pandemic, probably more patients on ECMO already. Well, I’ve yet to see a study that suggests where there’s some data revealed how many patients would’ve received a lung transplant as part of COVID-19. I don’t know. I wouldn’t have a clue, but I’m sure there will be a study at some point in the future that X number of patients who had COVID-19 who ended up with COVID ARDS or COVID pneumonia, who ended up on ECMO, would’ve received a lung transplant. There will be a study about that at some point.

So, here is another thing that we found when working with clients over the last two years, and by all means, I don’t think that this is over yet. COVID will be with us for a long time to come. The question is, how do we deal with it as a society? How will the health system deal with it? And so forth. For example, whenever we advocated for a client to have ECMO instead of just the proning, the hospital always came back and said, “Oh, he or she’s not a candidate.” When we then said, “Okay, that’s fine. Where is the evidence? Can you please give us an assessment from the ECMO team so that we can verify that what the ECMO team is saying, is accurate?” And the ICU never made it transparent, even though they had to. Or if they did make it transparent, they delayed. It was days later. 

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So, by ICU’s not making documented information transparent, that should be very concerning, because what is it that they have to hide? Well, if someone is not a candidate for ECMO, well, let us know in black and white, let us know what’s the reason and make it transparent. And that often didn’t happen. Well, it never happened. Or if it did happen, there were many delays. And also, when you look at “standard treatment” for COVID in the last two years from our research, it has shown that COVID treatment has been pretty much standardized in most English-speaking countries. You would be starting with high-flow nasal oxygen. If a patient doesn’t need intubation straightaway, then you would carry on with non-invasive ventilations such as CPAP (Continuous Positive Airway Pressure) or BIPAP (Bilevel Positive Airway Pressure). If that doesn’t work, you would be going onto mechanical ventilation with a breathing tube or an endotracheal tube in an induced coma.

If that didn’t do the trick and you had high FiO2 requirements, if you had high-PEEP (Positive End-Expiratory Pressure) requirements, you would be going onto things like nitric oxide, proning, you would be going on to paralyzing with neuromuscular blockade, you would be going with restrictive fluid management, and yet you then would be trying to liberate a critically ill patient from the ventilator.

And if that didn’t succeed, you would be aiming for a tracheostomy. You would be doing the suctioning, you would be doing the nebulization, you would be doing the bronchoscopy, you would be doing the antibiotics and antifungals if there was an infection on top of the COVID infection, you would be looking at rescue therapy such as nitric oxide, prostacyclin, and other selective pulmonary vasodilators. Sometimes you may be looking at sildenafil or Viagra, and when patients developed refractory hypoxemia, despite prone ventilation, or in the presence of contraindications to prone ventilation, you would be looking at ECMO.

You would also be looking at treatments such as recruitment maneuvers, such as higher volumes, higher pressures to prevent atelectasis. Now, and then again, next option would be to establish a patient selection criteria for the use of VV (Venovenous) ECMO in severe respiratory failure that needs to be applied. There is no experimental treatment for ECMO as far as we are aware. There’s nothing documented. We haven’t heard of any experimental treatment. It was pretty much, despite of what I mentioned now, it was pretty much the antivirals, steroids as a first-line treatment, and then hydroxychloroquine, azithromycin, aspirin. Then, you would be giving the antifungals and antibiotics on top of what you are doing. You would also be giving immunoglobulins, you would be giving vitamins, you would be giving nutrition, you would be doing all of that, and then go from there. So, that’s it in a nutshell.

But it pretty much confirmed, as I mentioned, pretty much confirmed everything that we have been observing over the last years when working with young patients in intensive care. And clearly, to underline that, I published a testimonial a few months ago, couple of months ago, three, four months ago, where one of our clients from last year that we were working with, was a 36-year-old man with COVID-19. Proning didn’t work, then he ended up on ECMO, and he ultimately survived. And we had a lovely, lovely testimonial from the family, how we helped them going from A to B, and how we helped their loved one survive while they were in ICU.

That also goes to show that I can confirm what I always say. The biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what to look for, they don’t know what questions to ask, they don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care. Why am I saying that? Clearly, if you have a loved one in intensive care that goes in with COVID-19 pneumonia or ARDS, and you don’t know that ECMO is even an option, your loved one might be doomed. Your loved one might be doomed.

You need to know what you don’t know, and you need to know where to get help. You need to find out very quickly what you don’t know, and you need to find someone that knows what you don’t know, and that’s where we can help you with here at intensivecarehotline.com. We can show you the things you don’t know. We can lift the curtain, so to speak, and bring transparency into the ICU space. That’s what today’s livestream is all about, it’s about transparency. It’s about bringing light to the health system and where it’s falling down. It’s clearly falling down on that end. And as I said, ECMO, VV ECMO for lung failure can lead to a lung transplant. It would be very good to know how many patients over the last two years had a lung transplant out of COVID-19 and ECMO. I’m sure that, that’s a study that will come out at some point.

Hi, Helene, nice to see you again. You never heard of ECMO until you educated it. Look, ECMO is a reasonably new therapy now. I would say it’s probably been around for the last 15 to 20 years, which may sound like a long time, but it’s actually not. I remember when I first started out in ICU, I had no idea that ECMO existed. I first came across ECMO probably 2005, 2006, but even then, it wasn’t a standard therapy, it was just in the beginning. And then I would say 2010, 2012, it became more and more standard therapy, but similar to ICU, there’s just a lack of specialist staff. If someone was to look after ECMO patient, it’s such a high level of responsibility, it’s next level of responsibility. You’ve got blood being extracted from the body, going through a filter, going through the bypass machine. There’s the risk of blood clots, there’s the risk of bleeding, there’s the risk of stroke. It’s just a very complex arena.

And picture these ICUs incredibly busy before COVID, and it was a higher-risk endeavor to look after ECMO patients before the pandemic. And now, you’ve got ICUs being crazy busy, completely out of control, plus ECMO. It’s just spiraled out of control, I believe. Anyway, so I just thought this video was quite important, because you need to know about the implications, you needed to know about what’s happening from a bigger picture perspective. You needed to know that we had observed this fairly early on in our consulting, and now finally, somebody gave us the evidence that what we observed wasn’t just daydreaming, it was actually based on facts.

I want to wrap it up here today, but I would love to answer some more questions. If there are any, before I wrap this up, feel free to suggest any topics you want to hear about in these livestreams. If not, I have endless topics that I want to talk about over the next few weeks, but in the meantime, feel free to leave your comments below this video or now while I’m still live, what topics you want to know about, and then I can make it part of this weekly series here.

Now, I do offer one-to-one professional consulting and advocacy. We also have a membership for families in intensive care where you have access to a membership area and you have access to myself and our team via email, and we can answer your questions there, but obviously, the shortcut is to talk to me directly. We also, as part of what we do, we review medical records. If you have any questions, if you feel like there could be some medical negligence, we are happy to review medical records. It’s all part of what we do.

You may also want to check out intensivecarehotline.com if you have a loved one in intensive care, you can call us on one of the numbers on the top of the website or simply send an email to us to support@intensivecarehotline.com.

If you’re finding value in this video, I hope you give it a thumbs up, you give it a like, you subscribe to my YouTube channel for updates for families in intensive care. Leave a comment below what you want to see next, or what questions you have from this video, and click the notification bell. And that’s where I want to leave you with today. I will be seeing you again next week. I presume there are no other questions for now, and I want to leave it with today’s topic, and I hope I’ll see you again next week.

Oh, Helene, you’ve just got a question, “Mom suffered aphasia but was concealed from me. Things like head injuries, stroke, or a tumor can all cause aphasia. People with aphasia can have trouble speaking, reading, or understanding any of this.” Yes, for sure. That is right. Now, how can that be concealed from you, Helene? If you were visiting your mom, you would’ve seen that she can’t talk, or was she ventilated at the time, which would’ve made it very difficult for her to talk anyway? You would’ve seen that she can’t talk unless she was ventilated? Did you not ask the question?

Anyway, so yes, absolutely. A stroke, head injury, or a tumor can all cause aphasia, for sure. How come you only found out afterwards? “Yes, but they refused the diagnosis.” Why did they refuse the diagnosis, do you know? Do you think they wanted to hide something? For those of you that are just coming on now, we’ve gone through today’s topic. The panel is now open for questions, so if you have any questions about your loved one in intensive care, just type them into the chat pad. Now, the floor is open for any questions.

So, you are saying, “Iatrogenic, malfeasance injured. Yes.” So, you think they had something to hide? Yeah, it all comes down really to reviewing medical records or having access to medical records from the start, that’s what it comes down to.

I mean, when we work with clients, the first thing that we tell them now is get access to the medical records. Let us talk to the doctors and nurses. Let’s ask all the right questions. But the first thing we ask clients now is, do they have access to medical records? It’s critical so that you can actually verify that anything the intensive care team is telling you, you can actually see firsthand. And in this day and age, it’s not difficult to get access to medical records. In this day and age, in 2022, you should get a link to a website with a username and the password, and that should give you access to medical records in no time. The hospital shouldn’t be making any excuses about needing to copy paperwork. In this day and age, medical records should be electronic, should be online, linked to a website with a username and a password, and you should have access to the medical records. 

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• INTENSIVE CARE’S HIDDEN SECRETS AND MYTHS BEHIND THE SCENES, THAT THE INTENSIVE CARE TEAM KEEPS AWAY FROM YOU AT ANY COST AND OTHER FAMILIES OF CRITICALLY ILL PATIENTS HAVE NO CLUE ABOUT THOSE HIDDEN SECRETS!

Again, those of you that have come later, we’ve wrapped up today’s topic. The floor is now open for questions. Please type your questions into the chat pad, I’ll be more than happy to answer your questions while I’m here on this livestream.

Any other questions? Any other questions from the people that are on the call? I would love to answer your questions while I’m still here. If you want to type them into the chat pad, I’ll be doing those livestreams usually every Saturday night, U.S. time. I think today we started at 8:30 PM Eastern Time, which is 5:30 Pacific Time. It’s 10:30 AM here, Sydney and Melbourne. Unfortunately, it’s in the middle of the night in the U.K., but I know that we often have U.K. viewers here as well. And I’ll be doing the same again next week.

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I’m not sure yet what topic that I’m going to talk about next week, but I’ve got a list of topics that I want to go through. But you’re also welcome to suggest any topics below this video or now, and then I can look into it. I presume if no one has any other questions, I’m going to wrap this up today. And I would love to see you again next week, same time.

And I hope you’ll have a good evening and good night wherever you are, or a good day, and I will talk to you next week.

This is Patrik Hutzel from intensivecarehotline.com.

Take care.

Kind regards,

Patrik

The 1:1 consulting session will continue in next week’s episode.

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