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.
In last week’s blog, I talked about,
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 and the question today is
Should my sister have a tracheostomy and go home with intensive care at home? Live stream!
Wherever you are, welcome to another Intensive Care at Home and Intensive Care Hotline livestream. My name is Patrik Hutzel from Intensive Care Hotline, and Intensive Care at Home.
Today’s livestream is about, “Should my sister have a tracheostomy in intensive care and go home with Intensive Care at Home?”
What a great question and it’s a question we get all the time. I could replace should my sister go home with my mother, my father, my spouse, my brother, my child. We get this question all the time from people all around the world, really and I want to share more light on it today.
Now just quickly, some housekeeping issues. Just want to address some housekeeping issues. If you have questions, please type them in the chat pad below and please keep them to today’s topic. If they’re not on today’s topic, I will absolutely get to them at the end of the presentation. But for now, let’s just focus on today’s topic. Just briefly, before we get into today’s topic, what makes me qualified to talk about this topic?
I have worked in intensive care for over 20 years in three different countries. Out of those 20 years, I have worked as a nurse unit manager in intensive care for over five years and I have been working with Intensive Care at Home now for over 10 years in two different countries. We are currently running Intensive Care at Home here in Melbourne, Australia and in Sydney and in Brisbane where we look after predominantly ventilated patients at home with tracheostomies, those are adults and children.
So that’s a little bit about me but let’s dive right into today’s topic.
So, should my sister have a tracheostomy in intensive care and go home with Intensive Care at Home? As I briefly mentioned, I could replace my sister with my brother, my spouse, my mom, my dad, my child. It goes across the board. We get this question all the time from people all over the world but obviously predominantly here in Australia but as well as in the US, Canada and the UK; that’s where we speak to most people in those countries. So let me look at this.
The answer to this question, really, is that it depends.
So before someone in intensive care has a tracheostomy, your goal should not be to go and get a tracheostomy and then send your mom or your family member home with Intensive Care at Home. That should not be your goal. Your goal should be to avoid the tracheostomy at all cost and your first question to the intensive care team should be, what is the intensive care team doing to get your sister, your brother, your mom, your dad, your spouse, your child off the ventilator with a breathing tube or the endotracheal tube and avoid the tracheostomy? That should be your very first question and you should be doing your research around that topic before you even look at services such as Intensive Care at Home.
Obviously, we are in the home care business as well and we want to help people to go home. It has to be for the right person. It has to be for the right purpose. It has to be with the right team. It definitely has to be avoiding the tracheostomy in the first place. That should always be the very first goal.
I’ve written extensively and I’ve made videos about how to avoid a tracheostomy, how to get someone off the ventilator and the breathing tube or the endotracheal tube. There are certain criteria that needs to be met. And just to share a little bit more light there, someone who is sedated and in an induced coma for many weeks or many days even and is potentially even paralyzed for situations such as proning or because they might have a surgical wound, they might breathe against the ventilator, if people are in prolonged induced comas or are paralyzed, chemically paralyzed with muscle relaxants, they will have a difficult time weaning off the ventilator and the breathing tube in the first place. So the longer someone is ventilated with a breathing tube and the endotracheal tube, the harder it’ll be to get them off the ventilator because patients in intensive care decondition fairly quickly. Their muscles get weak and therefore it’ll be harder for patients to actually wake up and be strong enough to be weaned off the ventilator and that’s why they often then need a tracheostomy in the first place.
So one of your goals should be to direct or push the intensive care team from very early start of your loved one’s admission into intensive care to try and wean them off the ventilator to start physical therapy or physiotherapy early so that deconditioning is minimized and that breathing muscles can start working again and are strong enough to wean your loved one off the ventilator.
What we are often seeing when families come to us, they say things like, “My loved one’s been in an induced coma now for two weeks because they have COVID pneumonia or they have COVID ARDS or they have a general pneumonia. They have a heart attack.” You name it, the list of conditions is endless that gets people into an induced coma. And then they come to us and they say, “Now all of a sudden, the intensive care team says, ‘Oh, we need to do a tracheostomy,'” and they’re completely gobsmacked. They have no idea what’s happening because they’ve been trusting blindly and they haven’t done their research.
But there are also families that come to us who research about Intensive Care at Home, for example, and they realize someone can go home with a tracheostomy and being ventilated with our service, Intensive Care at Home. And then they’re asking the question of our today’s livestream; should my family member have a tracheostomy and go home with Intensive Care at Home?
That should never be the goal. The goal for Intensive Care at Home is, when someone has a tracheostomy already and has proven over and over again that they can’t wean off the ventilator for whatever reason. That’s when you should look at Intensive Care at Home. You should not think about Intensive Care at Home when your loved one is on the verge of potentially needing or not needing a tracheostomy. That’s the better question and the better approach in a situation like that. Therefore, you should be mobilizing all resources to avoid the tracheostomy and you should be doing your research early on to look for the signs how your loved one can be weaned off the ventilator and the breathing tube and the endotracheal tube. That should be your goal.
Now, when someone can be weaned off the ventilator and the breathing tube and the endotracheal tube, instead of having a tracheostomy, they can then, as a next step often, can be moved to a hospital ward, hospital floor. So it would be foolish to compare getting someone off the breathing tube and the ventilator and then move them to a hospital floor, comparing that to needing a tracheostomy, staying in ICU for much longer, potentially going to Intensive Care at Home services. It’s a difference of day and night and the difference is so huge that you can hopefully see why I want to elaborate on this topic because there’s a difference between day and night; your goal should always be to wean your loved one off the ventilator and the breathing tube and the tracheostomy and avoid the tracheostomy. Your goal should never be aiming for Intensive Care at Home. That could be your goal, again, if your loved one has proven that they can’t be weaned off the ventilator and the tracheostomy in the first place. So that’s a crucial difference.
Recovery after the breathing tube is removed will be so much easier for everyone involved, for you, for your loved one, for the hospital, for the rehab centers because if someone has a tracheostomy, it’s just so much more complicated to get follow on services because lo and behold, if someone has a tracheostomy and a ventilator, it needs specialist services. It needs intensive care nurses. It needs intensive care doctors. And services are so much more difficult to be set up. Yes, it can all be done but by you focusing on avoiding the tracheostomy in the first place, everyone’s life will be so much easier. So moving along, if someone does have a tracheostomy, let’s just say, just like I explained, let’s just say a tracheostomy is unavoidable for whatever reason. Maybe your loved one has been in an induced coma for too long. Maybe they are too weak to be weaned off the ventilator. Maybe they do have a severe respiratory condition. Maybe they have COPD. Maybe they have asthma on top of a pneumonia and an ARDS, for example. Maybe they had rib fractures. Who knows. And let’s just say a tracheostomy is unavoidable.
Then you should slowly start to think about Intensive Care at Home but even then you should be looking to wean your loved one off the ventilator, getting rid of that tracheostomy and again, look at the pathways. The first pathway is getting rid of the ventilator, getting rid of the tracheostomy and then going to a hospital floor or to a hospital ward as opposed to needing the tracheostomy and the ventilator for a long time. That could get your loved one or could keep your loved one in ICU for many weeks, many months sometimes.
And sometimes, here in Australia, you could go home with Intensive Care at Home. In the US, they often want to push out loved ones to LTAC. I’ve made plenty of videos about LTAC that we strongly recommend not to go to LTAC. So you really have to think this through from an early stage. You have to do your research from an early stage because otherwise the intensive care team will lead you and they may not necessarily lead you to a place where you and your family feel comfortable. So it’s really critical that you start doing your research early on.
Now, if you have any questions around that topic, just type them in the chat pad and I will get to them. If you want to ask questions that are not related to today’s topic, type them in the chat pad and I will get to them at the end of the video. I will absolutely answer your questions. That’s what I’m here for.
So if your loved one has a tracheostomy and there’s a good wean, there’s a fast wean, again, hopefully your loved one can just go back to the hospital floor, to the hospital ward and they can hopefully move onto a recovery there because again, a tracheostomy is an artificial airway. And an artificial airway has the risk for things to go wrong which means the airway could block, the airway could come out, all sorts of things could happen. And therefore you need specialized skills for that, i.e. the intensive care team, intensive care nurse in the home, or even in rehab, they need someone there that has experience with tracheostomies.
But again, in ICU in particular, the goal should still be on weaning of the ventilator. Now, there are a couple of exceptions to the rule where you can’t focus on weaning off the ventilator. Let’s just say someone, God forbid, has a C1 or C2 spinal injury. That’s when you can’t wean off the ventilator because when someone is quadriplegic or paraplegic, the muscles won’t work therefore those people can’t be weaned. So that’s probably the exception to the rule. Or if someone has a neuromuscular disease such as motor neuron disease, anything like that, they can’t be weaned either because their muscles are simply no longer working.
So there are a few exceptions to the rule but as a rule of thumb, you absolutely need to focus on weaning a lot more off the ventilator with or without a tracheostomy but much better to wean them off before the hospital even considers a tracheostomy. So I hope that’s clear around what to achieve.
Now, I just briefly want to focus one minute on our US audience specifically because in ICU, if someone ends up with a tracheostomy and they end up with a tracheostomy in the ICU, patients often get sent out or the ICU wants to send out patients to LTAC and again, I don’t know how much research you’ve done, we strongly advise against LTAC. They’re not good places to be. They’re not designed for critically ill patients and patients often bounce back into ICU with various negative consequences. Various negative consequences do often occur when patients end up in LTAC. LTACs are not geared for intensive care patients with a tracheostomy. And I just want to leave it there because I’ve done plenty of other blog posts and videos about LTAC for our friends in the United States.
So the goal is getting rid of that ventilator. That should always be a crutch, a temporary crutch; no more, no less than that.
Let’s just say your loved one is now having a tracheostomy because they can’t be weaned off the ventilator and the breathing tube. The next step is again, focusing on physical therapy, focusing on physiotherapy, focusing on breathing exercises, focusing on removing the support or reducing the support from the ventilator so your loved one can get off that ventilator as quickly as possible. Once they’re off the ventilator with mobilization as well, mobilization needs to happen every day, every single day; people need to get out of bed no matter what the ICU is telling you. I can tell you most ICUs that I’ve worked at, we’ve been mobilizing patients every day if possible and for someone with a tracheostomy. As long as they’re hemodynamically stable, there is absolutely no reason why they can’t be getting out of bed and they can’t be mobilized. That’ll strengthen their upper bodies. That’ll strengthen their breathing muscles. Strengthen their other muscles. And it strengthens their mental wellbeing. And everybody’s winning.
Part of why someone should have a tracheostomy is simply that, you can stop sedation. It’s just the more stable airway where they’ve got their mouth free. At least they can try and mouth words even though they can’t talk. It’s just such a better device compared to a breathing tube in the mouth.
So then before you give consent to a tracheostomy, you should also absolutely 100% ask, “What’s the plan?” if you do give consent to a tracheostomy. Again, you should be consulting with us first and foremost so there are no surprises for you and also that you can have someone on the phone with you that can challenge the intensive care team clinically. You should absolutely consult with us first before you make any decisions and you should always have us on the call with a meeting with the intensive care team. So A) we can interpret what’s really happening, B) we can ask the right questions to the intensive care team; we can hold them accountable and we can guide you every step of the way so there are no surprises for you and your family. There are so many pitfalls when someone is in intensive care. There are so many pitfalls. It’s such a puzzle that you need to piece together and get one-piece wrong, you can mess up many, many things, unfortunately.
So with the tracheostomy, again, if your loved one is on minimal ventilator settings, they should be able to be weaned off the ventilator fairly quickly assuming they’re also doing physical therapy, they’re getting out of bed by the same time. That’s when you know things start to get moving and your loved one can hopefully be weaned off the ventilator. Of course, a lot of it depends what else is happening. Does your loved one have neurological condition, for example? If your loved one has a neurological condition, are they awake enough to follow instructions? Are they awake enough to follow commands? Are they awake enough to work with physical therapists and respiratory therapists to get off the ventilator? Those are all questions that are relevant and need to be answered in situations like this.
So if after many weeks, or God forbid, even many months, your loved ones still can’t come off the ventilator despite all the best efforts that may or may not have been made with regards to breathing exercises, mobilization, optimizing medications, optimizing ventilation settings, optimizing the size of the tracheostomy, optimizing the brand of the tracheostomy, maybe someone needs an inner cannula or they don’t need an inner cannula. So there’s a number of variables that you need to look at. And only then if you are 100% certain and beyond the shadow of a doubt that your loved one can’t come off the ventilator, then you should absolutely 100% be looking at services like Intensive Care at Home, absolutely. It’s the best service for patients that can’t come off the ventilator and have a tracheostomy. It’s the best alternative because you don’t want your loved one going to a nursing home, going to an LTAC in the US. Those are places that have no skills for long-term ventilated patients.
And patients are often bouncing back to ICU because they don’t get the care and the skills that they need and that’s when you absolutely should come to Intensive Care at Home. If you are here in Australia, you should contact us. We can help you with the funding side of things. We provide specialist support coordination where we can help you with the NDIS if you’re below 65 and we can help you negotiating with the funding body, we can help you setting up the funding, we can help you get access to the NDIS or any other funding bodies because we’ve done it so many times and you should be contacting us at your earliest convenience. But even if you are not here in Australia and if you are in the United States, you should still contact us because with our Intensive Care Hotline, we provide consulting and advocacy and we also have some contacts in the US where we might be able to set you up with a service that’s doing similar stuff that we are doing here. It obviously depends a little bit on your location, where you are and then we can help you hopefully as a next step.
But even with consulting and advocacy, often we can help you improve the territory that you’re walking because we have a team of ICU nurses. We employ hundreds of years of intensive care nursing experience and we have all the insights and knowledge that is needed to manage difficult situations, to hold intensive care teams accountable, to ask the right questions and help you and your family to get better outcomes.
If you have come to the conclusion that Intensive Care at Home is the only option or the best option, again, then you should definitely contact us. We can help you with NDIS specialist support coordination and then we can negotiate with the NDIS what needs to happen next. You should not be afraid about what the hospital says because the hospital often doesn’t even know what to do to get patients out especially when it comes to going home from intensive care directly.
Some intensive care units think that’s not possible. We’ve proven that beyond the shadow of a doubt that it is possible. So don’t be shy and ask for what you want. Don’t be shy for challenging the status quo and ask for you to go home.
So if you then want to proceed and we can help you with the NDIS and other funding bodies to go home, then it’s a case of organizing equipment. The hospitals actually do often organize equipment. Even the NDIS often organizes equipment. And again, we can help you there. Then it’s a case of setting up the team. You will most likely need 24-hour nursing care with ICU nurses at home because that’s evidence-based practice and that might take a little while until you have the team together. Maybe sometimes the house needs a little bit of adjusting because you need a hospital bed, you need a lot of space, you might need a commode or a recliner. There are certain things that need to be in place to make it happen for your loved one before they can go home.
Some of it also depends on your location. Do you live in a rural area? Do you live in a metropolitan area? How long does it take us to set up the service? Other extra costs involved if you are in a rural area? So those are questions that need to be answered prior to you deciding of going home. But we are here to help you. We can definitely talk to you what should be the next step. But as I said, the first step should be to avoid the tracheostomy in the first place and you should get rid of that breathing tube as quickly as possible. If you can’t get rid of the breathing tube and you do need a tracheostomy or your loved one needs a tracheostomy, the goal is still to get the tracheostomy removed as quickly as possible and start doing the breathing exercises once again. So that’s it in a nutshell. You should not focus on a tracheostomy to begin with. A tracheostomy is a backup plan, Intensive Care at Home is a backup plan.
But I’m also well aware that if you are watching this video, your loved one has been in intensive care now for a long time and can’t come off the ventilator, can’t come off the tracheostomy, or even if they “only” have a tracheostomy and that stops them from going home, you should still contact us because your loved one, most likely, still needs 24-hour nursing care with a tracheostomy. And again, we can help you how to obtain that.
Contact us either at [email protected] or call us on one of the numbers on the top of our website depending on where you are.
Now, before I wrap this up in a minute, I just want to make sure that if you do have questions, just type them in your chat pad and I’d love to answer those questions as we are nearing the end of our discussion today.
Hi, Helene. Okay, so that’s a great question, Helene. I’ll just read that out again. What about not being tricked into consenting to, I would think that means a permanent tracheostomy hole, a reversible hole that can close.
So that’s a very valid point, Helene, and I actually do believe it again probably depends a little bit on the country that where people are from. Here in Australia or in the UK, most tracheostomies are being done percutaneously which means they’re being done in ICU at the bedside, done usually by an intensive care specialist. It’s a 30 to 45-minute procedure, sometimes even less. They’re more or less poking a hole into the lung. Put people asleep; basically they’re putting them into an induced coma and then they do a tracheostomy. And then they put them back on the ventilator again. They remove the breathing tube in the mouth. And that’s that.
Now, the other alternative is a surgical tracheostomy where people go to the operating room to have the tracheostomy done. Now I favor the first one, the percutaneous versus the surgical one. It’s quick. The hole closes fairly easily after the tracheostomy is no longer needed whereas having it done surgically, yes, there could be some issues especially about hole closure. If a percutaneous tracheostomy needs to close, you take out the tracheostomy, you might put a tegaderm dressing on it and it often closes within two days where you almost have to do a new incision in order to be able to breathe. So that’s the situation there, Helene.
So again, it comes down of doing your own research. Which tracheostomy do you prefer? Do you prefer a percutaneous one? Do you prefer a surgical one? Do we think it’s going to be a long term tracheostomy? Do we think we only need it for a couple of days? So those are all factors that come into play here in terms of how you make the decision of what to do next with a tracheostomy or no tracheostomy. I hope that clarifies, Helene.
Are there any other questions? Okay, so let me just quickly wrap this up today.
So as I said, Intensive Care At Home is a great service for the right patient at the right time. If they can’t come off the ventilator with the tracheostomy beyond the shadow of a doubt, that’s when you need to start looking at Intensive Care At Home. We have many families come to us. They ask us about Intensive Care At Home on day two or day three of their loved one being in ICU. And most of the time it’s way too early. As I said, the only situation you should be asking for that is simply if your loved one has spinal injury, a high spinal injury or a neuromuscular disease where the breathing muscles don’t work any longer, then you absolutely can start looking for Intensive Care At Home services. It looks to me like there are no other questions at the moment. There are no other questions for today.
If you have a loved one in intensive care that can’t move along, that can’t be weaned of the ventilator, you should absolutely contact us at intensivecareathome.com on one of the numbers on the top of the website. Or if you need help with a family member in intensive care, not so much about going home, you should go to intensivecarehotline.com and again, call us on one of the numbers on the top of website. And for both of our services, you can just email us. Send us an email with your questions to [email protected] or [email protected].
Now Helene, you’re asking how can someone be weaned off the ventilator with ARDS, with pneumonia. That’s a tricky one, Helene. As you would know by now, with COVID, many patients have had exactly that picture; ARDS and pneumonia and many of them failed weaning off the ventilator. So especially with pneumonia and ARDS, it can be very long road to be weaned off the ventilator, especially with ARDS, proning is one way. If that doesn’t work, ECMO might be a way because that gives the lungs time to rest and heal. And once the lungs have rested and healed, then the weaning process should be so much easier.
Again, how can someone be weaned off the ventilator? They should be changed from a controlled mode to a spontaneous mode then oxygen should be reduced. PEEP should be reduced. Pressure support should be reduced. People should start to wake up by obeying simple commands so that they can work with the people that facilitate the weaning process. Same with pneumonia. Sometimes you need to put people with pneumonia in an induced coma for a few days again, to let the body rest and heal. And only then can the weaning process be started. It sometimes appears that it’s not a quick fix and that no one can sort of rush that process. And I agree, you can’t rush that process.
Now, how do you wean someone? Again, I’ve written about this extensively. I have made some videos about it so I encourage you to check out those videos around how to wean someone off the breathing tube, the ventilator and the tracheostomy. But the bottom line is this; mobilization, checking regular blood gases, reducing ventilation support; that in a nutshell is what needs to happen when someone should be coming off the ventilator. I will do a video in much more depth around when extubation can be done with COVID or with ARDS.
Now, if there are no other questions, I hope you enjoyed this. Please give me comments. Give me your feedback. Give it a thumbs up if you like it.
And if you have a loved one in intensive care, contact us at intensivecarehotline.com, call us on one of the numbers on the top of the website and we’d love to help you.
I will do another livestream next Sunday morning, 11:00 AM Sydney, Melbourne time which is 7:00 PM Eastern Standard Time on a Saturday, 6:00 PM Central Time, 4:00 PM Pacific Standard Time next Sunday with another YouTube live.
I’ll announce the topic very soon. Thank you so much for coming onto the call and I shall talk to you soon.
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.
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, Mornington Peninsula, Frankston area, South Gippsland, as well as Wollongong in New South Wales.
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.
Also, we have been part of the Royal Melbourne health accelerator program in the past for innovative healthcare companies.
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.