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Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults & Children with Tracheostomies and where we also provide tailor made solutions for hospitals and Intensive Care Units whilst providing quality services for long-term ventilated patients and medically complex patients at home, including home TPN.
In last week’s blog, I talked about,
INTERVIEW WITH INTENSIVE CARE AT HOME QUEENSLAND SERVICE MANAGER DIONNE ESSENSTAM
You can check out last week’s blog by clicking on the link below this video:
In today’s blog post, I want to answer a question from one of our clients.
Can You Live a Long Life with a Tracheostomy?
Hello and welcome to another Intensive Care at Home and intensivecarehotline.com livestream.
Today’s question is, again, a question that we get very frequently. It’s one of the most frequently asked questions whether it comes to patients in intensive care or families in intensive care, or whether it comes to Intensive Care at Home services. It’s a question that comes up over and over again. It also comes back to, once again, to the purpose of a tracheostomy, because the purpose of a tracheostomy can be many folds, but many families get confused about it.
I also believe that intensive care teams don’t explain it well enough to really understand the purpose of a tracheostomy, and its many implications, but also its usefulness for certain situations. So, I want to dive into that today in much depth.
I also, want to welcome our viewers who watched this on the replay if you couldn’t make the livestream.
So, before we go into today’s topic, in case you are wondering what makes me qualified to talk about such a topic as, “Can you live a long life with a tracheostomy?”, my name is Patrik Hutzel. I am a critical care nurse by background. I have been working in critical care/intensive care for over 20 years in three different countries. I have been working as a nurse unit manager in intensive care for over five years. I am the founder and managing director of Intensive Care at Home, where we are providing a genuine alternative to a long-term stay in intensive care and where we are providing quality of life and in some situations quality of end-of-life at home for long-term intensive care patients, predominantly with ventilation, tracheostomy, BIPAP (bilevel positive airway pressure), CPAP ventilation (continuous positive airway pressure), home TPN (total parenteral nutrition) other medically complex patients as well that are not necessarily ventilated, but that have still intensive care nursing needs. So, that’s a bit of my background.
I’m also a counsellor and consultant for families in intensive care. I’m an advocate and consultant for families in intensive care, and I have been advocating and consulting families in intensive care for the last 10 years as part of my intensivecarehotline.com consulting and advocacy business.
Now, if you have any questions regarding today’s topic, please type them into the chat pad or you can dial in live on the show with the numbers that I put below this video, but these are also the numbers where you can get hold of us during the week. After I’ve gone through today’s topic, I will also answer other questions that have come in during the week. So, to really make sure you are getting the most value by spending time with me on this video, whether it’s in real time or whether it’s after you are watching this on replay.
So, can you live a long life with a tracheostomy? Let’s dive right into this today. The short answer of it is it depends. Like many questions when it comes to intensive care, complex care, intensive care at home, it’s often not a clearcut answer. But we really need to go one step back here and discuss really what’s the purpose of a tracheostomy. When do you need a tracheostomy? What’s the purpose? What’s the shelf life of a tracheostomy? And that’s very different for different people.
So, let’s get right at the beginning when patients are being admitted into intensive care because the reality is that only patients really that end up in intensive care will also end up with a tracheostomy. There are few exceptions to the rule here, but I’d say 99% of patients that will need a tracheostomy temporarily or permanently are patients in intensive care and are ventilated with a breathing tube. They’re in an induced coma most of the time. If they can’t come off a ventilator with a breathing tube for whatever reason, and I’ve explored those reasons why someone can’t come off the ventilator in countless other videos. So, I’m not going to dive into this today because that’s been explored in many other videos and blog posts.
So, the bottom line is that only if someone can’t come off the ventilator with a breathing tube beyond the shadow of a doubt, and I’m made a video about that too, how to wean a critically ill patient off the ventilator and the breathing tube. It’s a video that I highly recommend you watch because that’s really where it all starts. A tracheostomy should only be done if a critically ill patient in intensive care can’t come off the ventilator and the breathing tube without a shadow of a doubt.
Now again, there are exceptions to that rule. For example, someone after a neurological condition or with a neurological condition such as a stroke or a seizure, might not need a ventilator, but might need a tracheostomy because they can’t swallow and if they can’t swallow, they’re at high risk of aspiration, i.e., aspiration pneumonia, and then they’ll end up on a ventilator once again. So therefore, a tracheostomy might be the best option for some neurological condition and not necessarily ventilator. Ventilator and tracheostomy are necessary for respiratory conditions, but also for some neurological conditions, and I will come to that in a minute.
So, going back one more step because I could go down a few rabbit holes here. Every time I’m sort of giving a different scenario, it’s easy to go down rabbit holes when it comes to tracheostomy. When should it be done? When should it not be done? How long will it need to stay in and so forth.
So, let’s go again right at the beginning. When someone is in intensive care with a breathing tube and a ventilator, the first goal should always be to avoid a tracheostomy. That should always be the primary goal for any patient in intensive care, that’s on a ventilator with a breathing tube. The primary goal is to wean them off the ventilator and the breathing tube, full stop. No need for a tracheostomy. That should be the number one priority. No other questions asked.
So, if then patient can’t be weaned off a ventilator, and once again, I’ve made countless videos and blog posts around when a patient can’t be weaned off the ventilator, what’s the reason for that? Is then a tracheostomy the right next step? And if it is, assuming it is, then once again, we need to break this down into two scenarios, probably three scenarios even.
One is a tracheostomy should be done to wean someone off a ventilator, and once that’s been achieved, wean them off the tracheostomy. Again, the goal should always be to eliminate ventilation, mechanical ventilation, and tracheostomy.
If that, once again, can’t be achieved for whatever reason, and I will go into the reasons a bit later, then the question is, can someone be weaned off the ventilator but still need the tracheostomy? Again, maybe they can’t swallow, maybe they need ongoing suctioning, maybe they had a laryngectomy. Whatever the reason for that is maybe then a tracheostomy might be needed long-term.
For how long? It’s difficult to say. In some situations, it could be for the rest of the person’s life. In other situations, it could be, once again, maybe for a few years. Sometimes people improve, especially younger people, they improve, and then they can have the tracheostomy removed. So again, it depends on their condition.
Then lastly, does someone need a tracheostomy and a ventilator for the rest of their lives? Examples, when would someone need a tracheostomy or a ventilator or both for the rest of their lives? Well, clients we’re working with Intensive Care at Home would be such as C1, C2 spinal injury clients. They have a high spinal injury and therefore, they can’t breathe.
Other reasons for needing a tracheostomy and a ventilator for the rest of their lives would be such as motor neurone disease. Other situations would be cerebral palsy. Some of our clients with cerebral palsy have ventilation and tracheostomy for the rest of their lives. But then there are other clients as well who don’t need a ventilator for the rest of their lives, but they need a tracheostomy because they do have severe neurological conditions.
So, with all of that said, if they have severe neurological conditions such as a stroke, seizures and acquired brain injury, anoxic brain injury, hypoxic brain injury, traumatic brain injury, and the list goes on, and they can’t swallow properly and they need airway management because they can’t clear their airway, do they then need a tracheostomy indefinitely or for the rest of their lives? Again, most likely, yes, but it’s hard to put a timeline on it.
Once again, we had, or we have been looking after children at home with a tracheostomy initially on BIPAP, CPAP or pressure support ventilation at home with a tracheostomy. We were taking them home from the pediatric ICU and we were looking after them at home for about six months. They were premature babies. They had lung disease and we weaned them off the ventilator and the tracheostomy at home, and then after about six months, they had the tracheostomy removed because they were in that development stage. What often happens is for premature babies, they have minimal lung surfactant and therefore they can’t breathe properly. They then need a tracheostomy and a ventilator until the surfactant can develop, and then they often can have the tracheostomy removed as they grow and develop. That’s an overly simplistic overview of those situations, but I believe it’ll give you the picture, it’ll paint the picture for you what’s possible here.
So, I hope that gives you a very good overview in terms of what’s the purpose of a tracheostomy. I do believe I need to actually make a video about what’s the purpose of a tracheostomy. Even though I have broken it down many times in when a tracheostomy should be used, I don’t think I’ve actually designated a video just to that, what’s the purpose of a tracheostomy? I actually need to write that down, so I remember for one of my future topics.
So then, coming back to our original question, can you live a long life with the tracheostomy? Well, in short, yes. Let me give you some examples. I am not talking about intensive care here as such, because intensive care stays should be time limited, and they are time limited. The longest that I’ve seen someone stay in intensive care is up to two years. However, in a situation like that, you should be looking for Intensive Care at Home rather than for a long-term stay in intensive care when it comes to mechanical ventilation, tracheostomy. You should be clearly looking for home care with Intensive Care at Home when it comes to that.
So, let’s just break this down into some client categories as I call them. For example, we have some C1, C2 spinal injuries on clients that we are looking after with Intensive Care at Home, and some of those clients have now lived for decades. We’re talking about a particular gentleman, he had a C1 spinal injury at the age of six. I think he’s now in his early 40s.
So, does that answer the question straight away, can you live a long life with the tracheostomy? This gentleman has been alive for nearly 40 years now with a tracheostomy and a ventilator, despite otherwise being paralyzed. Can you imagine?
Other clients, spinal injury, C1, C2, we have looked after some of them now for many years, not decades, but for many years, and again, they’re living a very good life considering their circumstances and they’re otherwise healthy. Of course, those clients need a lot of attention because they are ventilated. They have a tracheostomy. That in and of itself leaves room for complications, but they’re not in multiple organ failure. Their heart is working. Their kidneys are working. Their liver is working. Their brain is working. To a degree even their lungs are working with the only difference that a spinal injury, patients can’t initiate any breaths because of their spinal injury, so their breathing muscles are paralyzed as well.
But can they live a good quality of life? Absolutely. They’re in and out. They have community access. They’re trying to live a normal life as much as possible. Again, the alternative for our clients here is they would either die or they would live in ICU. Nobody wants to live in ICU. That’s terrible.
Then, coming to other conditions such as cerebral palsy, for example. We know we have one client at the moment who’s got cerebral palsy. He’s got a very long-standing medical history, and lots of ICU readmissions. He’s got a tracheostomy, he’s got a ventilator, and he’s living at home with our service, and that’s where he should be. So, there’s quality of life at home, even with a tracheostomy and a ventilator.
Then, motor neurone disease. We currently have two clients that are living at home with a tracheostomy and a ventilator, and they have motor neurone disease. They’ve been living at home now for many years. So, those are examples here. Again, similar to spinal injuries, those clients need a lot of attention. They need basic nursing care, they need ventilator care, they need intensive care of course at home, but they can still live a good quality of life. They have community access. They’re living with their families. It’s a very good quality of life.
Then other examples, can you live a long life with a tracheostomy and not having a ventilator? Yes, absolutely. Again, we’ve had clients or we’re having clients that have an acquired brain injury, have a hypoxic brain injury, and they don’t need a ventilator, but they need a tracheostomy because they need secretion management, they need airway management, they can’t protect the airway, and they can’t swallow.
Again, how long can those clients live? Potentially for decades, assuming they get good nursing care, which is what we believe we do at Intensive Care at Home. Our nurses keep them home predictably, keep our clients home predictably. That’s the goal.
Then other situations are end-of-life situations at home. So, the clients that I’ve given you so far, they’re not end-of-life situations at the moment. It could turn into end-of-life depending whether there are complications that we can’t foresee or we don’t know, but at the moment, they’re not end-of-life situations. Whereas we’ve had tracheostomy clients at home, not on a ventilator, but they were going home for end-of-life care with a tracheostomy, for palliative care. We’ve had both end-of-life care at home for ventilation with tracheostomy. We’ve had end-of-life care at home with tracheostomy. So, let’s give some examples.
We’ve looked after a lady, long time ago, actually, it would’ve been nearly, it was in 2015, I believe, 2014, 2015, 2016 even that went home from hospital with a tracheostomy, no ventilation initially. She was a lady who was in a car accident, no brain injury, but she was also suffering from cancer, and she had chemotherapy at the time. So, she was going through a very rough time, living at home with a tracheostomy while going through cancer treatment with chemotherapy, and she made it very clear to us and also to her family that she wanted to pass away at home. She did not want to go back to hospital, and that is actually what happened. We looked after her at home for about 12 months before this wonderful lady passed away at home.
In this situation, she couldn’t live a long life with a tracheostomy. She had the tracheostomy for about 12 to 18 months. I would’ve to look up my records, but it would’ve been around 12 to 18 months. So no, she couldn’t live a long life. However, she could live life on her terms, at least for the last 12 months in terms of she could be at home, which was obviously very important to her and her family.
Other situation where, unfortunately, someone couldn’t live such a long life was a little boy we looked after a while ago. He was a five-year-old boy. He was born with a tracheoesophageal fistula, basically had a connection between his trachea and his esophagus, which caused him a lot of trouble. Lots of ICU admissions. He nearly lived in ICU for the first three or four years of his life until we finally took him home, and then at least he could live the last few months of his life at home before he unfortunately passed away.
It was a very sad situation, but again, unfortunately because he had the fistula, there was not much that could be done. He had an incredibly difficult airway that needed the intensive care nurse 24 hours a day, which at the time the NDIS (National Disability Insurance Scheme), shout out to our friends from the NDIS here, was only funding night shift and there was no day shifts and the child passed away during the daytime just as we predicted because the family could not save the child’s life while they were waiting for an ambulance. The NDIS to this day still haven’t taken any responsibility there that lack of funding contributed to the death of the child. So, a long life can be lived if you have the right support.
There was another situation where we looked after a 17-year-old girl at home. She was on a ventilator with a tracheostomy. Again, the NDIS at the time was only funding night shifts, and there was no funding for critical care nurses during the day. Just as we predicted, this child as well, passed away during the day because there was no critical care nurse who knew how to deal with a medical emergency. So, we are not making it up when we’re saying that someone with a ventilator and a tracheostomy needs 24-hour nursing care with critical care registered nurses, that’s the only way to make this safe.
There is another client that we looked after with a tracheostomy at home who also passed away because she didn’t have 24-hour nursing care. NDIS funded nursing care as well. This is for our viewers in Australia who know what the NDIS is, but the bottom line is anyone with a tracheostomy and a ventilator needs 24-hour nursing care at home with critical care registered nurses. There is no other way.
If you look on our website at intensivecareathome.com, there’s a section, ‘Mechanical Home Ventilation Guidelines’, and those mechanical ventilation, home ventilation guidelines demand and recommend that only exclusively intensive care nurses or critical care nurses with a minimum of two years ICU or pediatric ICU experience can safely look after ventilated and tracheostomy clients at home. So that’s about the safety aspect, which is obviously very, very important.
When it comes to home care with ventilation and tracheostomy, it’s critically important that the only way you can replicate an intensive care bed in the community is actually by having 24-hour intensive care or critical care registered nurses, full stop. Again, that is evidence-based. When you look on our website at intensivecareathome.com, when you look at the Mechanical Home Ventilation Guidelines.
Next, I want to give you some examples of how people can actually live a longer life with a tracheostomy. Maybe I almost need to rephrase the question because the question that comes in quite regularly is, can you live a long life with a tracheostomy? Maybe the question needs to be rephrased to can you live a longer life with a tracheostomy? I think that’s fair to say. Sometimes in intensive care as well, when the discussions are first held around a tracheostomy, it is also to prolong life and give people time to recover. If they then can’t recover, the tracheostomy most of the time will still give them the ability to prolong life, but unfortunately, patients then often need 24-hour nursing care, and they need to go home with a service like Intensive Care at Home.
Now, let’s give some other examples so you can see that people can live a longer life with a tracheostomy. So, I talked about motor neurone disease in particular. Now, we know of some motor neurone disease patients in our environment that have been moved to palliative care very quickly when they first got diagnosed with motor neurone disease. Tracheostomy was never on offer. Families and patients didn’t know that it was an option and they passed away within just a few weeks of being diagnosed. Again, these were clients here in Australia where NDIS support coordinators didn’t know what help was available, which is a big issue that especially with the NDIS, you need the right NDIS support coordinator to make it all happen with nursing care funding.
If you are a participant or if you are an NDIS support coordinator and you want to go after nursing funding with the NDIS, please contact us. We can certainly help you with that because otherwise, we wouldn’t be in business.
But coming back to those very dramatic cases where people weren’t informed about a tracheostomy as an option, and they passed away just a few weeks after they were diagnosed with motor neurone disease. Contrast that with our clients that have been now living at home with motor neurone disease with a ventilator and a tracheostomy for years. Both patients or clients combined would’ve lived for over 10 years combined with a tracheostomy. I hope that illustrates that life with a good quality of life can definitely be prolonged in those situations.
There are other conditions where tracheostomy might be the right thing to do and will buy you time so that you can live a longer life, which would be myasthenia gravis for example. We have a client at home with myasthenia gravis who’s on BIPAP for her condition, and she might benefit from a tracheostomy down the line if she wants that. Of course, it’s all client or patient choice, but she could potentially prolong her life if she was to opt and go for a tracheostomy.
Next, another condition where a tracheostomy most likely really prolonged life is Guillain-Barre syndrome. Guillain-Barre syndrome patients in ICU, they often end up with a tracheostomy early on in their ICU stay, assuming they’ve been correctly diagnosed with Guillain-Barre syndrome. Then, they often stay in intensive care for months on end to be weaned off the ventilator. There’s no need for that. Those patients can go home with Intensive Care at Home, to prolong life.
Now, many patients with Guillain-Barre syndrome have the tracheostomy and ventilator removed eventually, which is fantastic, which is also showing it definitely prolongs life even without a tracheostomy. So, that really illustrates the case very well of what should be achieved with a tracheostomy, or it should be a temporary thing.
Other situations where a tracheostomy can be very, very helpful is motor vehicle accidents, multiple trauma, where then a tracheostomy is often necessary because often patients in ICU wait for surgery while if they come in with multiple trauma, I’ve seen so many patients going into ICU after an MVA, a motor vehicle accident, and then they have multiple fractures. Some of them get fixed straight away. Others can’t be fixed straight away. So, patients need to stay on a ventilator for a bit longer. Then they do need a tracheostomy and then sometimes patients can’t be weaned. Sometimes, patients after a motor vehicle accident or multiple trauma need a tracheostomy or ventilator for the rest of their lives as well, even if they don’t have a neurological condition or a spinal injury. Certainly, those patients are there as well. I hope that illustrates.
Furthermore, patients with COPD (Chronic Obstructive Pulmonary Disease), for example. COPD, asthma, lung fibrosis, they’re also candidates for a tracheostomy sometimes that can prolong their lives, whether it’s having a tracheostomy and/or a ventilator for the rest of their lives, whether it’s temporary. You can see a tracheostomy and a ventilator have their time and their place, but I can’t stress enough that it should never be the end goal. The end goal in ICU should always be to remove the ventilator and the tracheostomy as quickly as possible, avoid the tracheostomy, remove the ventilator and the breathing tube as quickly as possible. That should always be the end goal. So, I hope that explains can you live a long life with a tracheostomy.
Let’s look at some questions that came in during the week that I will go through now. Here is a question from Brittany, Brittany says,
“My dad is in the cardiac ICU due to advanced congestive heart failure along with many other comorbidities, diabetes, stage four kidney disease, coronary artery disease, infected foot, et cetera. He’s on an IABP balloon pump and dialysis. IABP balloon pump stands for Intraaortic Balloon Pump. He was to be evaluated for a heart and kidney transplant, but the hospital decided not to put him on the list due to his comorbidities, including calcified arteries.
They amputated below the knee on the 13th of June due to osteomyelitis and MRSA and yeast infections and the toe amputation is not healing. We have now been told that he will be weaned off the balloon pump and sent to a cardiac rehab facility.
Without the balloon pump and without a heart transplant, what is the likelihood that weaning him off the balloon pump and going to a cardiac rehabilitation facility is more like putting him in hospice care?
We were told back in April that he had four to six months to live without a heart transplant.”
Wow, that is a great question. I’m very sorry to hear about your dad’s situation, Brittany. Let’s go through this. I do believe I have some answers for you. So, if they can wean him off the balloon pump, then his heart failure can’t be that bad, I argue. Now, let’s see what needs to happen often when it comes to congestive heart failure, coronary artery disease to wean someone off a ventilator. Let’s talk about the mechanics here so that you understand where to from here.
His ejection fraction was probably fairly poor when he first went into ICU, i.e., the contractility of his heart would’ve been very poor. He would’ve had an ultrasound or a TOE (Trans-oesophageal echocardiogram) ultrasound at the beginning of his admission into ICU, and then they would’ve probably started some treatment such as, let’s just say his ejection fraction was less than 35%. They probably would’ve started him on some medications such as milrinone, dobutamine, a little bit of dopamine, potentially Levosimendan.
Now, I have seen many patients in ICU with heart failure on an intraaortic balloon pump where they’ve been given dobutamine, milrinone, Levosimendan, and sometimes a little bit of noradrenaline or adrenaline to slowly and gradually wean them off the intraaortic balloon pump as contractility and ejection fraction improved. Now, I argue without improvement of the contractility of your dad’s heart, he would not be able to be weaned off a ventilator and he would probably crash, and then he would need to go on ECMO (Extracorporeal membrane oxygenation) as the next step.
Now, what you haven’t shared in your email, Brittany, is you haven’t shared your dad’s age. Currently, as far as my research and experience goes, no one above the age of 65 will be put on a heart transplant list, that’s my experience. Rightly, wrongly, fair, unfair, I’m not going into that debate today, but that is my experience. So therefore, if your dad is above the age of 65, it’s highly unlikely he will get on ECMO and a heart transplant list. If he was to go on ECMO with a goal of a heart transplant, he would probably end up with an LVAD (left ventricular assist device) or an RVAD (right ventricular assist device) in the interim while waiting for a heart transplant. But in your dad’s case, also a kidney transplant.
When patients are in intensive care with heart failure and they’ve been started on milrinone, dobutamine, Levosimendan, and dopamine, then, you’d assume that things improve. You can check cardiac output, cardiac index. Your dad might have had a Swan Ganz catheter. Cardiac numbers will be checked. Cardiac output, cardiac index, SVR (Systemic Vascular Resistance), pulmonary wedge pressure to assess the effectiveness of all the treatment and therapies.
Now, I presume that is what’s happened, which is why they’ve weaned off the balloon pump or why they’re weaning off the balloon pump. I also argue that the cardiac rehabilitation facility may not take him unless the intensive care team can show him the improvement. Cardiac rehabilitation, it means for patients with a cardiac condition, they go into a cardiac rehabilitation facility for rehabilitation. I argue they won’t take him unless there is some improvement with his current condition.
So, what is the likelihood that weaning him off the balloon pump and going to a cardiac rehabilitation facility is more like putting him in hospice care? Again, I doubt that the cardiac rehabilitation facility would take him unless there is some improvement because otherwise, they would need to start talking to you about hospice.
So, here’s what to look for. Look for the following. Look for his ejection fraction. Ask them whether they’ve done an ultrasound to check his ejection fraction. Ask them for cardiac output, cardiac index numbers, SVR (Systemic Vascular Resistance). Ask them if he’s had medications such as milrinone, dobutamine, dopamine, Levosimendan, and if so, have they been effective? With the kidney failure, is he on a fluid restriction? It sounds like he may not because he’s on dialysis at the moment. They can probably manage it that way.
In terms of life expectancy, you were told in April that he had four to six months to live without a heart transplant. I don’t know the ins and outs. I would need to look at medical records, which is something we do here, but it would certainly help if you know the more information, the better. But with the information that you’ve shared with me, Brittany, I think that’s what should be happening next, if that makes sense. I hope that helps.
Also, with his amputations, he will need to go through some rehab to learn to walk again. Maybe he needs prosthetics, I don’t know, but clearly that is what should be happening next. I hope that helps, Brittany.
Next question from Michelle, Michelle says, “We are looking to bring my children’s father home. He’s having a tracheostomy done today. He doesn’t want to die in a hospital. It’s still early, but they were unsuccessful in weaning him off the ventilator. He was good for eight hours and then by 10:45 PM he had to be re-intubated. He has COPD (chronic obstructive pulmonary disease). We are just trying to make plans ahead of time. We don’t want him in a facility for life and he didn’t want them to let him die.” Well, Michelle, just like I said in the beginning of this video, a tracheostomy should not be for the rest of someone’s life, that should never be the goal despite those outliers being there.
It’s too early for the father of your children to be going home, I argue. He’s having a tracheostomy done today. Similar to what I mentioned earlier today, if he can’t be weaned off the ventilator, absolutely he will need to go home with a tracheostomy and a ventilator and then you should come to us at Intensive Care at Home. But in the meantime, I think it’s way too early. You should reach out to us and see whether they’re doing all the right things to wean him off the ventilator, wean him off the tracheostomy, because that’s also a critical part that families are missing when patients first go into intensive care.
Once again, I can’t stress this enough, the goal should always be to wean someone off of a ventilator and the breathing tube to avoid a tracheostomy, full stop. If a tracheostomy can’t be avoided, then once again, the next step is to wean them off the ventilator and the tracheostomy. Once the ventilator is weaned, next step is wean them off the tracheostomy. If none of that can be achieved, then absolutely, then you need Intensive Care at Home.
So, just because he’s only having a tracheostomy today or tomorrow, it’s way too early for you to suggest where this is going. But assuming your children’s father needs Intensive Care at Home, then you should absolutely reach out to us. Depending on where you are, you should absolutely reach out to us and we can help you taking the next steps in getting your children’s father home, then it’s absolutely the right step. I hope that helps. Let’s move on to the next question.
Question from Anthony, “Why are intensive care teams negative? I don’t understand the motivation because I know the hospital needs to make money, but the nurses and doctors in the ICU don’t have any attachment to the financials of the hospitals.” Well, they may. They may. I don’t know how the hospital structure contracts with doctors, whether there are some incentives in there to get as many new patients into ICU as possible. There could be some financial incentives there because I do believe or I know for a fact that the more short-term stays in ICU, generally speaking, the bigger monetary incentives for hospitals.
Then, Anthony asks further, “Are they just brainwashed from medical school?” Yeah, possibly. Possibly brainwashed from medical school that they can act like God. That might be part of it. Then, Anthony writes further, “My father’s in the ICU right now and had a TBI (traumatic brain injury) two years ago. The ICU team is now trying to pressure to end his life, even despite that we were able to assist my father improving according to the CSR-R by four points.” CSR-R by four points. What’s CSR-R? I actually have to look that up. I don’t know. CSR-R. What does that mean? Nothing comes up that’s medically related. Anyway, I think there’s enough in there for me to answer your question, Anthony.
Look, as I said, the incentive in intensive care is to get patients in and out as quickly as possible. There’s a massive demand on beds, especially with ICU side work on case payments. They tend to make their money when patients go in and out.
Next is that intensive care teams don’t want to deal with someone long-term because they then have to deal with your difficult questions, and it’s not my experience that intensive care teams favor long-term intensive care patients, which is again, where Intensive Care at Home is coming in.
The ICU team is now trying to pressure to end his life despite you were able to assist my father improving. So, if he keeps improving, even though even he might only improve by small margins, you should absolutely not let them do that, and you are well within your rights to not let them end their life. I’m assuming you are his medical power of attorney. There’s nothing they can do to force you to end his life, nothing.
I do believe there are some financial incentives, but I don’t know for sure. But I think there’s definitely some brainwashing going on that they know that they’re the only one who knows what’s best. I hope that helps, Anthony.
Let’s just quickly before we move along with some other questions, let’s just quickly talk a little bit more about Intensive Care at Home. If you need Intensive Care at Home for your loved one or for yourself, we are currently operating all around Australia in all major capital cities, but also rural and regional areas.
We have a strong critical care nursing workforce. We employ hundreds of years of critical care nursing experience on our team, and again, anything ventilation, tracheostomy related at home, we can take patients from intensive care directly. We are also looking after BIPAP, CPAP, ventilation at home, home TPN, IV fluids, IV antibiotics, electrolyte infusions at home such as magnesium or potassium. We’re doing all of that as well.
We are currently an NDIS approved provider in Australia, TAC (transport Accident Commission) in Victoria, iCare New South Wales, NIISQ (National Injury Insurance Scheme in Queensland), and also the DVA (Department of Veteran Affairs), but we have also received funding through the Department of Health or through hospitals directly. So, one way or another you should contact us.
We are also providing NDIS support coordination and if you are an NDIS support coordinator and you either want to work for us or you are interested because you have a client that’s looking for nursing care for ventilation, tracheostomy, then I encourage you to reach out to us as well. We have helped many clients to obtain the necessary NDIS funding or any other funding for that matter to provide Intensive Care at Home. Cuts the cost of an ICU bed by around 50%, and it makes just a hell of a lot of sense to move away from intensive care and move to a home care setting to improve the quality of life for patients and for families.
Now, this is another comment from Carly, Carly Connor who says, “What was happening during COVID lockdowns inside the hospitals when the governor made a law stating no visitors unless end-of-life for immediate family? They can have one visit behind a window with a walkie-talkie. It was horrific. It was like something out of a horror movie. I wish I had found your website while my daughter was in ICU.” Well, I guess that during COVID lockdowns it was terrible what was happening in ICU. I think it was terrible what was happening around the world. Whether you are pro or against lockdowns, doesn’t matter what was happening in ICU or in hospitals, it was just an absolute disgrace. So many families lost loved ones without ever seeing them again and they were dying in ICU with no families around. It was just horrific. I also think it was horrific for the ICU staff where the doctors, nurses, they couldn’t provide the care those families and patients deserved. It’s horrifying what’s happened.
But with Intensive Care at Home, again, if you are needing Intensive Care at Home, even if you are at home because you might have ICU readmissions because you don’t have the support you need or even if you have a team but you don’t have the right support if you think there’s room for improvement, if you’re only having support workers and you need more funding, please contact us. We can help you with more funding. Once again, we wouldn’t be in business if the funding wasn’t there. We wouldn’t be in business if we knew how to go about funding. So, contact us one way or another, whether you are in ICU, whether you’re at home.
I also encourage you that if you are a critical care registered nurse and you’re looking for work on the East Coast, on the east side of Australia, please contact us as well or anywhere around Australia really. Please, contact us as well. If you’re an intensive care specialist, please contact us as well. We are currently expanding our medical team as well.
Let’s move on to another comment from Susie who wrote below one of our videos, “Seven days in ICU is a cakewalk. We are on 20 months in ICU. I have recorded every time a doctor walked in the room to tell us updates. I have over 400 recordings and I’m glad I have these recordings so I can listen to after they walk out of the room and learn about what they speak of.” Absolutely, Susie. You cannot not do your own research. That’s critically important that you keep your finger on the pulse.
Susie also said, “My dad has been in ICU since the 9th of January 2022.” Remember she said it’s been 20 months. “It started with an abscess tooth. He went to the ER thinking it was his heart but was sent home. Three days later his tongue swelled up, cutting his airway off. He was put into a coma, intubated, and had several procedures to drain the infection from his neck. After a month and a half, he was placed in an awful LTAC.” So, this is a reader from the U.S. “During the biggest snowstorm in Texas history, almost all of Texas lost power for several days. Due to the LTAC (long-term acute care) being short-staffed, he was tied to his bed naked, hands and feet bound.” That’s terrible. I’m so sorry to hear that, Susie.
“Before the storm, my aunt had talked to him and two days into the storm she kept calling the facility and they would say he was sleeping. Finally, she insisted they put a phone to his ear and when they did, all they could do is gargle. We called the paramedics and took him back to ICU. He had aspirated from being left on his back. He’s a retired Medal of Valor Captain Dallas firefighter and has proved for 20 months his will to live. He has only been released five to six times for no more than 30 to 40 days, and he fell causing a subdural hematoma. 20 months now in ICU, he was released the last time, March the 18th, and he had a fall April the 1st, and he was doing better, and they planned on releasing him Easter, April the 9th, 2023. But at the last minute they called us and said he was in septic shock. So, here we are almost into July 2023. He has been on CRRT since April 16th. No urine output until May 25.” CRRT means Continuous Renal Replacement Therapy, it’s kind of a dialysis form.
“On June 4th, the ICU put an IVC filter in and June the 6th he had a cardiac arrest.” Oh, my goodness. “He was revived with three rounds of chest compressions. Now he’s not doing well, and they want to do a tracheostomy next week. He’s 85. I asked why a tracheostomy. They said they don’t like to see a patient intubated longer than two weeks. I wish I could tell you all the situations we have been through, but it’s very long.” I bet. It sounds like you need help urgently. Why would they do a tracheostomy after 20 months in ICU? Are you saying your dad has been in ICU on a ventilator with a breathing tube for 20 months? I would argue that is medical negligence if that was the case.
I can understand the complexities here after 20 months ICU. But again, my advice is not to give up. But I’m also concerned why would they do a tracheostomy after 20 months? That doesn’t make sense. You said he went home here and there, but has it been like that? He goes back home and then he goes back into ICU for re-intubation? If that’s the case, I would want to know why. But his will to live is definitely there. No one can object against that.
“He was in septic shock, has been on CRRT.” So, it looks like he’s got the full display of a long ICU stay here. If he needs a tracheostomy and he needs to go home, please contact us at intensivecareathome.com. I hope that helps. I hope that helps for today.
I do these YouTube lives once a week at the moment, currently at 10:30 AM Sunday on Sydney, Melbourne Time, which is 8:30 PM on a Saturday night Eastern Standard Time in the U.S., North America, which is 5:30 PM Pacific Time in North America, 7:30 Central Time, 6:30 Mountain Time in the U.S. So, look out for the next topic next week, next Sunday or Saturday depending on where you are, and we will get to it there and then.
I just need to quickly look at the email again. So, I’m very sorry to hear that what you’re going through there, Susie, but that is your best course of action, to question everything. It’s so important that you question everything because after 20 months in ICU, it doesn’t sound right that they do a tracheostomy now, does not sound right. Not after 20 months in ICU. So, the more information you could give me, the better it is.
Let’s wrap this up for today. I want to thank you for watching.
Once again, if you need Intensive Care at Home, if your family member needs Intensive Care at Home, please contact us. We are currently operating all around Australia, all major capital cities, including rural and regional areas. We are employing hundreds of years of ICU and pediatric ICU nursing experience, so we can pretty much take any patient home. If you’re at home already and you need more support, please contact us as well. If you’re a hospital, if you’re in ICU, please contact us as well. We can help you one way or another.
If you’re an NDIS support coordinator and you’re looking for solutions for your participants, please contact us. But if you don’t know how to go about nursing funding from the NDIS, I encourage you to contact us as well because we can help with all of that.
So, I hope that helps. That is enough for today. I do want to close it off here.
If you need counselling and consulting in intensive care, also go to intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected]. With Intensive Care at Home contact us there. Go to intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].
We also have a membership for families in intensive care and Intensive Care at Home at intensivecaresupport.org. There, you have access to me and my team, 24 hours a day, in a membership area and via email and we answer all questions, Intensive Care at Home and intensive care related.
I also offer one-to-one consulting for families in intensive care. Please contact us as well. If you need NDIS nursing assessment, please contact us. We can provide you with NDIS nursing assessment.
We also provide medical record reviews for intensive care patients in real-time for a second opinion or after intensive care.
Now, subscribe to my YouTube channel for regular updates for families in intensive care, click the like button, click the notification bell, comment below what you want to see next, and share the video with your friends and families, share it far and wide, and comment below what you want to see next, or what questions and insights you have from this video.
Thank you so much for watching.
This is Patrik Hutzel from intensivecareathome.com and intensivecarehotline.com and I will talk to you in a few days.
Take care for now.
Now, if you have a loved one in intensive care and you want to go home with our service intensive care at home and if you want to find out how to get funding for our service and how it all works, please contact us on one of the numbers on the top of our website, or send me an email to [email protected]. That’s Patrik, just with a K at the end.
Please also have a look at our case studies because there we highlight more about what we can do for clients, how clients can live at home with ventilation and tracheostomies and you can look at our case studies as well at our service section.
Intensive care at home Case studies
And if you are at home already and you need support for your critically ill loved one at home, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of that.
And if you are an intensive care nurse or a pediatric intensive care nurse with a minimum of two years, ICU or pediatric ICU experience, and you ideally have a critical care certificate, please contact us as well. Check out our career section on our website. We are currently hiring ICU and pediatric ICU nurses for clients in the Melbourne metropolitan area, Northern suburbs, Sunbury, Bendigo, Mornington Peninsula, Bittern, Patterson Lakes, Frankston area, South Gippsland, Drouin, Warragul, Trida, Trafalgar and Moe as well as Wollongong in New South Wales.
www.intensivecareathome.com/careers
So we are also an NDIS, TAC (Victoria) and DVA (Department of Veteran Affairs) approved community service provider in Australia. Also have a look at our range of full service provisions.
Thank you for watching this video and thank you for tuning into this week’s blog.
This is Patrik from Intensive Care at Home, and I’ll see you again next week in another update.