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Muscular Dystrophy Ventilation: ICU to Home with 24/7 Critical Care Nurses (Tracheostomy)

Hello everyone, and welcome. My name is Patrik Hutzel. I am a critical care registered nurse by background, I’m also the Director of Intensive Care at Home and also the Founder. And I’m also the Founder and Director of Intensive Care Hotline.

Thank you so much for joining us live here today. It is Sunday the 23rd of November. It’s 10:30 here Am Sydney, Melbourne time. And for those of you watching, it is 6:30 PM Eastern Time in the U.S. on a Saturday, 3:30 PM Pacific time on a Saturday in the U.S. So welcome to our international audience.

Hi, Helene, nice to see you again, and thank you for joining. I also want to welcome our viewers on replay because I know these videos get watched on replay as well for those of you that can’t make it live.

Today, I’m covering something incredibly important, muscular dystrophy in ICU, long-term ventilation, tracheostomy care. And most importantly, how patients can successfully transition home with the right support if they’re stuck in ICU with muscular dystrophy. And also, I will talk about our own experience here at Intensive Care at Home, how we’ve successfully transitioned a number of muscular dystrophy client’s home from ICU or keep them out of ICU in the first place.

Before we dive right in, please hit the subscribe button, click the like button, turn on notifications, and most importantly, share this video with everyone that will benefit from it. We are here, or I’m here every week to support ICU families just like you as whether it’s to support while you’re in ICU or whether it’s to support while you’re transitioning home from ICU with Intensive Care at Home. Now, again, I’m a critical care nurse by background, having worked in critical care nursing for over 25 years in three different countries where I worked as a nurse unit manager for over five years in intensive care. And I started Intensive Care at Home in 2012, and we’ve been looking after dozens if not hundreds of clients in the community that otherwise would be stuck in intensive care. And we’ve delivered millions of hours of Intensive Care at Home nursing.

So, for anyone who still questions the concept, we’ve actually delivered millions and millions of hours. And you can look up our testimonials at intensivecarathome.com. You can look up our case studies and with Intensive Care at Home, we are bringing hundreds of years of intensive care nursing experience combined in the community. No other provider can match that level of expertise in the community. No other provider brings in a higher skill level into the community than we do in Australia. Also, we are the only service provider that actually has third-party accreditation for Intensive Care at Home. We are the only provider that has got the policies, procedures, and more importantly, we’ve built the intellectual property to deliver Intensive Care at Home nursing every day 24 hours a day.

So, I’m also the founder and director of Intensive Care Hotline with intensivecarehotline.com. We are consulting and advocating for families in intensive care all around the world. And again, we have saved many lives for our clients with Intensive Care Hotline. And once again, you can verify that on our testimonial section with our hundreds if not thousands of case studies or on our intensivecarehotline.com podcast where we’ve done numerous client interviews.

So, with Intensive Care at Home, we are providing home care for long-term ventilated adults and children with tracheostomies, but also for Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure) without tracheostomies, home tracheostomy without ventilation, cough assist management at home, ventilation weaning at home, central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line, port management at Home IV or TPN (Total Parenteral Nutrition) infusions, home potassium, home IV magnesium, home IV antibiotic infusions, SPC (suprapubic catheter) management, IDC (indwelling urinary catheter) management, PEG (Percutaneous Endoscopic Gastrostomy) tube management, nasogastric tube, and nasojejunostomy tube management at home.

All in the concept of Intensive Care at Home so that anybody who’s stuck in ICU long-term can go home and this is also important for any of you that are watching this, that are told by ICU teams that your loved one is not going to survive, I’ll challenge that and, you know, we can look at other treatment options at home or even in ICU, like I said, we have saved many lives with our consulting and advocacy options.

So, just a quick setup for today. So, we’ll be talking about muscular dystrophy in ICU first, and then we’ll talk about options, obviously long-term options, how to go home, when to go home, we’ll talk about the setup at home. We look at funding at home. Who’s going to pay for it. Always keep in mind that if you are in a situation like this, an ICU bed costs between $5,000 to $6,000 per bed day, and with Intensive Care at Home we’re cutting the cost of the ICU bed by around 50%. That’s 50, and you, as a family and the patient wants to be at home, and the ICU wants a free bed, and the insurance companies want to half the cost, so it’s a win-win situation.

Let’s now look at understanding muscular dystrophy and ICU admissions. I will also talk about, obviously, some case studies today where we’ve successfully transitioned muscular dystrophy client’s home from ICU directly.

So, let’s start with the basics. Muscular dystrophy refers to a group of genetic disorders that cause progressive muscle weakness and degeneration. The most common types we see in ICU, but also in home care: Duchenne muscular dystrophy typically affects boys; symptoms start in early childhood. Becker muscular dystrophy, similar to Duchenne muscular dystrophy, but milder and with a later onset; and myotonic dystrophy affects adults and involves multiple organ systems.

Now, also let me quickly talk about Duchenne muscular dystrophy. When I worked with Intensive Care at Home in the early 2000s in Germany, that’s where my Intensive Care at Home sort of journey and experience started. By pioneering Intensive Care at Home in Germany way back when, we looked after a number of Duchenne clients with tracheostomies in the community.

Now, for any of you watching this that are especially in Australia or in the U.K., I have not seen many Duchenne clients offered a tracheostomy, their lives are often cut short, and I want to educate you here that a tracheostomy is a lifesaver for Duchenne clients in particular, or for Duchenne children even, because I have seen the comparison between Australia, the U.K., and Germany. Australia and the U.K. have not been honoring the wishes of families as much as in Germany, and I can only encourage you to reach out to us if your family member or your child has Duchenne muscular dystrophy so that we can help you advocate for a tracheostomy. Because I can tell you that from what I’ve seen over the years, and also the medical jargon that I’ve seen being written about Duchenne, saying, oh, patients and families won’t have any “quality of life’.” Well, who is to determine what’s quality of life?

That’s not up to doctors, it’s not up to nurses, it’s not up to me, it’s up to the individual and their families. Quality of life is a perception, no more than that. It’s a subjective perception, and it’s up to the individual to decide what quality of life is acceptable for them or for their family member. That’s not up to me. My perception of quality of life is different than yours, and so it should be.

So why do muscular dystrophy patients end up in ICU?

The primary reason is respiratory failure, of course. As the disease progresses, the muscles responsible for breathing become weaker. This includes the diaphragm, your main breathing muscle, intercostal muscles (muscles between the ribs), and accessory breathing muscles in the neck and chest. So, what we call type 2 respiratory failure develops. This means the body can’t effectively remove carbon dioxide, which builds up to dangerous levels while oxygen levels drop, and that’s a very dangerous combination, as you can imagine.

The typical ICU admission scenario. I want to share a couple of real case studies, and I’ve changed identifying details for privacy, of course. Let’s call this person Peter. Peter has muscular dystrophy, was diagnosed in the early 90s, and for most of his life, he remained free of life-threatening complications. He worked full-time, lived independently with support workers, and managed his condition well, but a couple of years ago, Peter was admitted to ICU with type 2 respiratory failure that progressed to pneumonia.

He spent 60 days in ICU fighting for his life, followed by weeks in a respiratory ward, but then with a tracheostomy and a ventilator. And this is not uncommon, this is not uncommon at all. Respiratory infections that healthy people recover from easily can become life-threatening emergencies for muscular dystrophy patients. Another one of our clients also has muscular dystrophy, lived very independently with his parents, and then also ended up in a similar situation to Peter, and he spent months in ICU.

Now, he didn’t need a tracheostomy. He needed BIPAP ventilation plus cough assist and nasogastric tube. And then ended up going home with Intensive Care at Home because of the BIPAP dependency and the cough assist dependency. And also, this particular gentleman also has regular seizures. Peter doesn’t have any seizures.

This other gentleman, let’s just call him John, has regular seizures, BIPAP, cough assist, and muscular dystrophy. So, tracheostomy might happen down the line. But irregardless, a lot of muscular dystrophy clients in ICU that transition into the community then end up with a tracheostomy and invasive ventilation, or they end up on BIPAP, CPAP noninvasive ventilation, but also often cough assist management.

So, let’s look at ventilation options in ICU. So, when someone with muscular dystrophy is admitted to ICU with respiratory failure, critical care team has several ventilation options. Understanding these is crucial for families, and this is exactly where we help with intensivecarehotline.com to navigate these complex decisions. Now, more often than not, when a patient goes into ICU with muscular dystrophy, especially for invasive and noninvasive ventilation, one of the first things you will actually hear is, “Well, your loved one won’t survive. And if they do survive, they won’t have any quality of life.” So, you’ll get the doom and gloom speech, you get the negativity talk, you will get the impression very quickly that all the ICU wants to do is limit treatment options, not look at longevity, not look at quality of life, not honor your decisions, almost judging you for your decisions. But this is what we help with intensivecarehotline.com.

If you have a family member in intensive care, we will help you to manage that negativity and help you to create the narrative, the positive narrative. Because ICU is all about creating the negative narrative. It’s not difficult to create a positive narrative. We have so many case studies with Intensive Care at Home, but we also have so many case studies with clients at home living a good life. But also, we’ve saved so many lives in ICU over the years just with our consulting advocacy, knowing about patient rights, knowing about treatment options, knowing how ICUs operate intimately.

Now let’s look at treatment options. Let’s start with noninvasive ventilation. It’s the first line of defense is often BIPAP or CPAP. These are masks that deliver pressurized air to support breathing without a tube going into the airway. What are the benefits? It’s less invasive, low infection risk. Patient can still eat, drink, and speak, and can also have a break off the ventilator.

It needs ICU admission though, because again, BIPAP, CPAP cannot be managed on a general ward or floor up. What are the limitations of BIPAP or CPAP? It requires patient cooperation. Doesn’t work if respiratory muscles are too weak, can’t protect the airway from aspiration like a breathing tube can, and it may not be sufficient in severe respiratory failure. Also, another benefit is it doesn’t require an induced coma. It doesn’t require sedation and opiates. If anything, that would be counterproductive.

Let’s look at invasive ventilation options. And if you can choose between noninvasive ventilation and invasive ventilation, you always want to choose noninvasive. But the reality also is that for muscular dystrophy, that’s not always the case. Some cases are so severe that BIPAP or CPAP won’t eliminate CO2 retention won’t produce enough gas exchange that enough oxygen can be going into the lungs and not enough carbon dioxide can be exhaled. So sometimes that’s not simply enough, and that’s when you need to look at intubation and mechanical ventilation. So, when noninvasive ventilation such as BIPAP and CPAP isn’t enough, or the patient deteriorates rapidly, intubation becomes necessary. A tube is inserted through the mouth into the trachea connected to a mechanical ventilator.

The good news is its life-saving, but it creates new challenges such as the patient is on sedatives and opiates, is in an induced coma. Patient can’t speak. The risk of a ventilator-associated pneumonia (VAP) is high, especially with muscular dystrophy. It is difficult to wean off if underlying muscle weakness hasn’t improved.

Next, if a patient with muscular dystrophy can’t be weaned off the ventilator, which is often the case, which is why you’re trying not to intubate in the first place, that’s when the tracheostomy decision or the tracheostomy discussion needs to happen. And here’s where things get really important for families to understand. If mechanical ventilation is needed for more than 7 to 14 days, which often is the case for patients with muscular dystrophy, the ICU team should recommend a tracheostomy. But in some cases, they might also say to you, number one, we won’t even intubate because we think it’s futile.

Or number two, if they do intubate, they don’t want to do a tracheostomy because again, ICU teams are judging saying, oh, your family member won’t have any quality of life and therefore we should just stop everything. And it’s, “in the best interest of your family member to die.” They want to play God, and you need to challenge that. Who are they to tell you that your family member should live or die? That’s up to you. And their job is to making sure they get best care and treatment. And that’s what we do with Intensive Care Hotline. When you have a family member in intensive care, we make sure you make informed decisions, have peace of mind, control, power, influence so that your loved one always gets best care and treatment even if you’re not a doctor or a nurse in intensive care.

ICUs have no right whatsoever to limit treatment. That’s up to you and your family to get best care and treatment for your family member. And that’s why you need to get access to the medical records on day one when you have a family member in intensive care. Imagine that documenting not for intubation, not for tracheostomy, and you don’t know about it because that’s what ICUs often do. I’ve worked in ICUs long enough to know how they operate. ICUs will only tell you half of the things that are going on if that. Once you start looking at the medical records, you will actually see that they’re creating a whole different narrative in the medical records as opposed to what they’re telling you. And you need to be aware of that.
Also, ICU teams assume that you don’t understand. ICU teams assume you’re stupid.

Well, if you’re watching this, you already know that you are smart enough to do your own research that you can think for yourself. You don’t need anybody to think for you, and you’re just making use of the system. The system is there to help people, not to kill them off. But that’s what ICUs want to do in many cases. Also, keep in mind what ICUs are also not telling you is 70% to 90% of ICU patients actually survive. So, the odds are actually in your loved one’s favor, not against them. If you have any of those challenges that I’ve just highlighted, you need to reach out to us here at intensivecarehotine.com as a matter of urgency so that we can help you get best care and treatment so that you’re not getting treatment cut short.

Because I tell you what the main difference here is as well. The difference between getting treatment cut short in the early days of an ICU admission to as opposed to ongoing treatment, especially when it comes to tracheostomies, could be days. They’ll often will pass away within a few days in ICU, or they could be there for months. Intensive Care at Home can’t be set up overnight. There might be a lag time. Also organizing funding and all the rest of it. So, ICUs want to limit the time you’re spending in ICU, and one way for them to limit is by, “selling you that end of life is the best option.” By killing your family member is the best option. That’s what they’re trying to sell you in many cases. Well, the good news is we have saved many lives in those situations just through our consulting and advocacy.

So, let’s talk about the tracheostomy decision because here’s where things get really important for families to understand. If mechanical ventilation is needed for more than 7 to 14 days, the ICU team should recommend a tracheostomy. But even if they don’t, you can recommend one with the help from our end. That’s where we help you to advocate and help you to get what you want and help you to emphasize hospital policies, laws, state or national laws that help you to advocate. Again, that’s what ICUs are not telling you. ICUs are very good at telling you or wanting you to believe they can do whatever they want. Nothing could be further from the truth. As long as you stand up for your rights, as long as you stand up for your loved one, as long as you get help, because that’s what we are the experts in.

So, what’s a tracheostomy? A tracheostomy is a surgical opening in the neck directly into the trachea. A tube is inserted through this opening to maintain the airway and connect to the ventilator. Why is this better for long-term ventilation? It’s more comfortable than a tube through the mouth. It’s lowering the risk of airway damage. It’s much easier to manage secretions. Patients can eventually speak with proper equipment. Some patients can eat, but that’s the minority, not the majority. More importantly, mobility is possible. Patient can sit in a wheelchair, even go outside. All of our clients with Intensive Care at Home have community access. For Peter, this decision was made after his prolonged ICU stay. Three emergency intubations had damaged his trachea and his weakened respiratory muscles meant he needed ongoing ventilator support.

Now, if anyone watching this has dealt with a tracheostomy decision for a loved one, leave a comment. I know this is one of the scariest decisions that families face in intensive care. But I also think it’s not as scary as deciding about end of life. And in those moments, this is where Intensive Care Hotline becomes invaluable because at intensivecarehotline.com, we provide one-on-one consulting to help you understand your options, support in communicating with ICU teams, guidance on ventilation strategies including home care. Help planning for what comes next, advocacy to ensure a loved one gets appropriate care and also, we review medical records.

If you’re facing these decisions right now, do not navigate this alone. Go to intensivecarehotline.com and book a consultation call with me. We’ve helped hundreds, if not thousands of families through exactly this situation and saving many lives along the way where ICUs wanted to stop treatment, where ICUs tried to bully families into end of life. Can you imagine? ICUs trying to bully families to sign off on killing their loved ones? Yes, Helene, thank you for your comment. Yes, I know you have faced this decision with your mom, with your late mom. Okay, so let’s look at what critical care in ICU looks like for patients with muscular dystrophy and what they actually need. So, let’s talk about the level of care. Muscular dystrophy patients require an ICU because understanding this is crucial for families, and obviously it’s also crucial for planning discharge.

Number one, in ICU, they need 24/7 critical care registered nurse oversight, similar to a home care environment. In ICU, ventilated patients with tracheostomies receive constant supervision from critical care registered nurses who have advanced airway management training, ventilation management expertise, emergency response capabilities, advanced life support certification. The 24/7 critical care registered nurse oversight is also needed for patients on noninvasive ventilation, such as BIPAP or CPAP. Because whether it’s invasive or noninvasive ventilation, you need to check ventilator settings. You need to check arterial blood gases. You need to check conscious states of patients. You need to make sure patients are not aspirating. You need to be competent in doing suctioning through a tracheostomy or potentially deep suctioning if patients are on BIPAP or on CPAP.

So again, what are the specific skills required, whether it’s for invasive ventilation with a breathing tube with a tracheostomy, or for noninvasive ventilation with BIPAP, CPAP. Airway management, regular suctioning of a tracheostomy, or regular suctioning of a breathing tube, but also regular oral suctioning, sometimes deep suctioning for patients on BIPAP or on CPAP. Emergency tracheostomy tube changes can happen. Cuff management, inflating/deflating to allow speaking, and in some cases, eating. Recognition of airway obstruction or dislodgement. Ventilator management, setting and adjusting ventilation parameters, the checks of arterial blood gases and oxygen saturation. Troubleshooting alarms and malfunctions, recognizing ventilator-patient dyssynchrony.

Next, prevention of complications, pressure injury prevention with two hourly repositioning, infection control measures, deep vein thrombosis prevention, nutritional support, coordination.

Next, emergency response when needed, manual ventilation using bag valve mask, CPR with understanding of special considerations, recognition of respiratory distress, rapid intervention capability. With emergency response, I just want to say that the best emergency response is to prevent it in the first place, whether that’s in an ICU or in a home care environment, doesn’t really matter where it is, but it’s got to be prevented. That’s the most important part.

So, let’s look at the reality that Peter faced. Peter required constant visual observation 24/7 in ICU. His nurses were allocated specifically to him one-to-one for safety. Why? Because the tracheostomy could become blocked with secretions at any moment. Dislodgment during position changes could be fatal within minutes. Sleep apnea episodes required immediate intervention, weakened or absent cough reflex meant secretions could not be cleared independently. So, what are the critical questions that families face? Can my loved one ever leave ICU with these needs? The answer is yes, but only with the right support in place. And the right support in place in those situations is clearly Intensive Care at Home. Because otherwise, the alternative is that the patient would be stuck in ICU long-term. And who wants that? The ICU doesn’t want it. You don’t want it. The patient doesn’t want it. Once again, by offering Intensive Care at Home, it’s a win-win situation. And the funding bodies don’t want it, whether it’s insurance or government funding, doesn’t matter. ICU beds cost $5,000 to $6,000 per day. And Intensive Care at Home cuts the cost of that by 50%. Again, win-win situation.

And I can tell you from my extensive experience working in ICU, when a patient is discharged, that bed doesn’t stay empty for a very long. The next patient comes in in no time, generally speaking. So, let’s look at the discharge planning process or discharge planning challenge. And this is where many families and even ICUs hit the ball. The hospital says it’s time to go home. But how can someone requiring ICU-level care possibly be safe at home? Well, the common scenarios hospital suggest is that if someone stays in ICU long-term to stop treatment and letting them die, because who would want to live like that? Well, I can tell you plenty of people want to live with Intensive Care at Home. And it’s often inappropriate to even suggest that.  It’s a scarcity mindset. It’s a mindset that’s almost denying of life.  So, sometimes even hospitals might suggest, “Oh, your loved one can go to an aged care facility,” which is not really possible because no aged care facility can accommodate ventilated or tracheostomy clients.

Some hospitals might suggest for patients to go to a group home, or an SDA (Specialist Disability Accommodation), or a SIL (Supported Independent Living) that’s in Australia. And that can work if we provide the care in a SIL, or in an SDA, or in a group homes. Patients still need 24-hour nursing care. Because staff caring for multiple residents cannot respond immediately. And I can tell you those staff are not critical care nurses. But a group home, an SDA, or a SIL in Australia under NDS funding can work. Like I said, we’ve got clients in a SIL or in an SDA, as long as they have one-to-one nursing, it’s fine. It’s fine. Some families choose a SIL, an SDA, or a group home. And then, of course, going home with Intensive Care at Home. And that’s unrealistic unless it’s Intensive Care at Home with 24-hour intensive care nurses basically bringing the ICU into your home. Because nobody, whether it’s families, whether it’s support workers, not even general registered nurses can perform emergency tracheostomy changes, can perform ventilation care.

It leads to patients dying at home under either general registered nurse without ICU experience under family care or under support workers. Patients have died under this model, and I have plenty of evidence to back that up. For anyone watching this from the NDIS in particular, your delegated model of care is not working. People have died, and you know that. But you’re trying to sweep it under the carpet. So, because with support workers only or general registered nurses at home, that’s where tragic happens, and you don’t want that.

And I need to be very clear about this. Support workers, general registered nurses, no matter how caring and dedicated, do not have critical care training, advanced airway management skills, ventilator operation experience, emergency response capabilities. The evidence? Well, the NDIS has received plenty of incident reports from ourselves where patients have died under support worker models because we have provided the evidence for that. But the NDIS still hasn’t investigated those deaths because if they would, some people would need to be held accountable within the NDIS. NDIS knows that many participants died at home during medical emergencies that could have been, number one, prevented by critical care nurses or managed by critical care nurses 24/7. So not having 24/7 critical care nurse funding has been identified as a significant contributing factor to patient deaths in the community. And let that sink in.

These were preventable deaths. And most of these deaths were young people. One was a 5-year-old boy, and the other one was a 17-year-old girl. There were others as well and these were all preventable deaths.

So, let’s talk about Peter and the amiss that happened. Just 15 days after hospital discharge, Peter had an emergency overnight, sudden secretion built up, blocking his tracheostomy while sleeping. But obviously, our critical care nurse on duty quickly de-escalated the situation, but also reported that the support worker who was there as well reported that the support worker was absolutely terrified, not knowing what to do or how to respond if it happened during the day when only support workers were funded. And it’s just a reality without a CCRN present 24/7, you are gambling with your loved one’s life every single day.

The good news is the solution exists. This is why Intensive Care at Home was created in the first place. We bridged that gap between ICU and home with 24/7 critical care registered nurse support. Another emergency that happened with Peter a few weeks ago was that the ventilator just stopped working, just stopped working. No rhyme or reason, backup ventilator was used, of course. But again, how would a support worker manage that? They wouldn’t manage it at all because they simply don’t have the expertise. And this is also where evidence comes in where evidence is so important. So, what do I mean by that? Everything with Intensive Care at Home is evidence-based. Let me repeat that. Everything with Intensive Care at Home is evidence-based. What do I mean by that?

When you go to our website at intensivecareathome.com, you will find a section, Mechanical Home Ventilation Guidelines. Those evidence-based Mechanical Home Ventilation Guidelines are basically the framework that’s set for Intensive Care at Home nursing. When Intensive Care at Home first started in Germany in the early 2000, late 1990s, early 2000, people were quick to gather the evidence that this is a proven model of care. And they’ve come to the conclusion rightly so, that only critical care nurses with a minimum of two years critical care nursing experience can safely look after tracheostomy at home, ventilation and tracheostomy at home, or noninvasive ventilation BIPAP/CPAP at home 24/7.

It’s not 12 hours a day, 15 hours a day, 5 hours, it’s 24 hours a day. That’s the evidence. So, everything that we are doing here, everything that I’m talking about here is evidence-based, not just pulling it out of thin air. It’s all evidence-based. Also, what’s also very important to know and understand here is when patients get approved for funding for Intensive Care at Home, again, it’s also evidence-based. Doctor’s letters, independent nursing assessments, independent physio assessments, independent OT reports, they all say the same. Every health professional understands that someone on a ventilator with or without a tracheostomy can’t go home without Intensive Care at Home. Because if they did, they are at high risk of dying. So why isn’t the patient in ICU going to a hospital floor, hospital ward on a ventilator with a tracheostomy? That might happen in some rare situation depending on the hospital set up, but patients still need a one-to-one on a ward. They still need the ICU nurse.

So, everything that we do here is evidence-based. Nothing is evidence-based with a support worker at home or a general RN for a ventilated ICU patient. It’s not evidence-based. It’s a farce. It’s like flying the airplane with a cabin crew instead of the pilot. That’s what it is. So, let’s look at what a safe discharge looks like. But before we continue, make sure you subscribe to my YouTube channel and subscribe to our email newsletters at intensivecarehotline.com and intensivecareathome.com because it will help you navigate this complex territory. It is a complex territory.

So, let’s introduce the Intensive Care at Home model once again. And this is basically part two now where we are talking about the discharge and what life looks like at home. Welcome to part two. If you are just joining us, we’re talking about muscular dystrophy patients with long-term ventilation and tracheostomies or muscular dystrophy patients with BIPAP, CPAP ventilation, cough assist management, et cetera. And how they successfully live at home instead of staying in ICU long-term or what some ICUs want to not offer tracheostomies saying patients have no quality of life and we should just stop treatment and let them die with a whole lot of rubbish. We are here to present the alternative to that; we are a pro-life organization. We are a positive, optimistic organization, not a negative organization like many ICUs aren’t, want to let people die instead of helping them.

So, let’s look at the Intensive Care at Home model. At intensivecareathome.com, we provide what no one else in Australia is providing at this scale. 24/7 critical care registered nurse support for ventilated patients with or without tracheostomies in their own homes, or also for patients with tracheostomies without ventilation.

We are the only provider in Australia in 2025 that has achieved third-party accreditation for Intensive Care at Home. We are the only provider in Australia that has built the intellectual property to provide Intensive Care at Home nursing that has built the infrastructure with training for our staff and so forth. And once again, let me emphasize, this is not general registered nurses. Its critical care registered nurses. Definitely not support workers. Critical care registered nurses with ICU experience, advanced airway management training, ventilation experience, tracheostomy experience, PEG tube experience, cough assist experience, SPC, IDC experience, nasogastric tube, nasojejunostomy tube experience. Central line, PICC line, Hickman’s line, port management, home TPN, home IV potassium, home IV magnesium, home IV antibiotic infusions. It’s all what we can do here at Intensive Care at Home.

And once again, it’s all evidence-based. It’s all evidence-based. Again, go to our website at intensivecareathome.com and have a look at the evidence-based Mechanical Home Ventilation Guidelines. It’s all there. That’s our framework. And it’s a framework for safety. A support worker or a general RN framework is a framework for disaster waiting to happen. It’s the framework for a death sentence.

So, what makes critical care registered nurses different in the community? Education and training. Bachelor of nursing, three to four years, ICU experience or sometimes ED experience. Combination of both is good. Post graduate qualification in critical care nursing, specialized training in advanced airway management, including tracheostomy care. We require competencies, advanced clinical assessment and decision-making, autonomous practice in high-risk situations sometimes. But the goal is always to prevent those high-risk situations in the first place. Enhanced knowledge of airway, anatomy, and respiratory physiology, rapid detection and assessment of tracheostomy emergencies, emergency management skills. Annual requirements, advanced life support recertification, continuing professional development, competency assessments, equipment training updates, and so forth.

So again, let’s compare our support workers with registered nurses versus critical care registered nurses or ICU nurses. Support workers, with all respect, might’ve worked at the supermarket last week, and now they’re meant to look after vulnerable ICU patients. Not possible. They can’t administer medications, they cannot perform airway suctioning independently, cannot troubleshoot ventilators, cannot perform emergency procedures. I’m not even going there. It is like flying the airplane with a cabin crew instead of the pilot. Even general registered nurses, they can administer medications, they can perform basic airway care, but they have no ventilation knowledge, no advanced emergency training, no tracheostomy experience, no BIPAP, CPAP experience. They can’t usually give TPN either. Can’t manage a central line, can’t manage a PICC line, can’t manage Hickman’s line, can’t manage a port. Some can, but it’s the exception, not the rule.

And think about it. If general registered nurses or support workers could do all of that, why are we not having them in ICU? That should be the answer to everyone here. So critical care registered nurses, once again, competent in ventilation management can give medications, can perform basic and also advanced airway care, have ventilation knowledge, can do emergency tracheostomy change, can do the bag valve mask ventilation. They have the advanced assessment capabilities and they can autonomously manage emergency responses at least until help arrives if that’s what’s needed.

And once again, everything we do at Intensive Care at Home is based on evidence, and it’s based on the mechanical home ventilation guidelines that you can find at intensivecareathome.com. These guidelines are evidence-based, best practices for patient assessment and monitoring, equipment management, emergency response protocols, quality of life optimization, and community integration support. Can’t stress the community integration enough. Again, compare living in an ICU long-term or dying versus community integration. It’s like day and night.

One is saying yes to life, the other is saying no to life. Well, I know which side that I’m on. I’m saying yes to life. I’m saying yes to life, to our clients and their families. And like I said, we are an optimistic, positive organization. We have no time for negativity here or for the doom and gloom that often comes from ICU. And once again, go to intensivecareathome.com and have a look for yourself on the mechanical home ventilation guidelines. They’re evidence-based and they provide the framework for Intensive Care at Home nursing.

So now let me walk you through Peter’s actual transition from ICU to home, because this demonstrates exactly how our model worked or works.

Peter’s situation, again, a man in his 40s with muscular dystrophy. 130 days in ICU, permanent tracheostomy, overnight invasive mechanical ventilation with a ResMed ventilator, daytime ventilation for naps, complete dependence for all ADLs, activities of daily living, continued oral nutrition. Yes, there is a high aspiration risk, which needs to be managed, but Peter has full cognitive function and communication ability. What are his NDIS goals? Upgrade in home healthcare to remain free of hospitalization and ICU readmissions. Maintain excellent relationships with families, of course, maintain independence, living in his own home. Community involvement through work, church, hobbies, travel goals with wheelchair, accessible vehicle. And I know that Peter is going into the community and is even traveling on weekends, which is amazing.

So, what’s the care plan we implemented? Again, 24/7 CCRNs, coverage, primary responsibility for all airway management, ventilation monitoring, troubleshooting, medication management and administration. Clinical assessment, multiple times per shift, emergency response capability. But once again, it’s so much more important to have strategies in place to prevent emergencies in the first place. Peter also has support workers working there under CCRN delegation because there needs to be helpful manual handling during transfers, community access, meal preparation, personal care assistance, community access, of course. But for all high-risk activities and the reality is that for anyone with a tracheostomy, every activity is high risk because if the tracheostomy comes out, blocks, dislodges, whatever the case may be, a patient could die within minutes.

And things like eating, drinking need to be closely monitored. Things like showering, because water could get into the tracheostomy easily. Transfer with a hoist with a tracheostomy. There’s a huge dislodgement risk. Obviously, even during sleep, ventilation needs to be monitored. Community outings, emergency response capability needed. Also knowing what equipment to prepare when you’re going out into the community. Very important. So, what’s the equipment that Peter uses at home? A ResMed Astral 150 ventilator, AirVo high-flow humidification system, cough assist machine, suction units, portable and stationary. Pulse oximetry, capnography for CO2 monitoring, specialized wheelchair hoist system, air mattress for pressure relief.

All of this equipment requires specialized knowledge to operate, troubleshoot, and maintain. CCRNs are trained on every single piece. What’s Peter’s quality of life now? Lives independently in his own apartment, maintains employment, which is amazing, can work from home, contributes to society, can live a purpose, a purposeful life. Peter attends his community church regularly, participates in community activities, plans accessible travel, has avoided hospital readmission since proper care was established. Think about it. This is a man who nearly died or requires life-sustaining technology 24/7, and he’s thriving because he has the right support in place. We can do the same for you if you are in a similar situation.

Now let’s also look at the reality of 24/7 critical care at home care needs. I want to really get specific about what 24/7 means because this is where funding discussions happen. And families need to understand what’s truly necessary. What does a typical night shift look like? For example, shift handover from the day team, safety equipment checks, ventilation, emergency equipment, oxygen monitoring, medication, administrations, a snack or a drink for the client. Because it’s a high aspiration risk activity, nebulizer treatment, clinical observation, chest auscultation, hoist transfers, maybe to the bathroom, to the commode. It’s a two-person activity. It’s high risk. Again, can all be managed with the right supports in place. Face and hand hygiene, teeth brushing.

Again, it’s a high-risk aspiration activity. No healthy person would think that brushing your teeth is a high-risk aspiration activity. But for patients on ventilation, tracheostomy with swallowing difficulties, it is. Then tracheostomy care is a two-person high-risk activity. Changing the dressing, cleaning, it’s sterile, changing inner cannula. That’s all the skill of an ICU nurse, cough inflation and pressure management. Also, pressure management of the cough is also a critical care nurse activity. Connect to ventilator, disconnect from ventilator. Knowing when to connect, knowing when to disconnect without putting a patient at danger or at risk is also very important. And it’s the skill of a CCRN.

So hourly ventilation, documentation and monitoring. Monitoring bleeding, monitoring that condensed water is not building up on the ventilator. Emptying the circuit from water if there is condensed water. Building up two-hourly pressure area care and repositioning, which is a two-person job, of course, one CCRN, one support worker. Joint massage and stretches as needed. Tracheostomy suctioning every two to three hours minimum or as needed. Suction unit maintenance, oxygen saturation monitoring, nebulizers, and so forth.

Next, monitoring morning limb stretches and exercises, cuff deflation procedure. Again, two-person procedure. Disconnect from ventilator, hoist transfer to commode, commode transfer to toilet. Bowel motion and assessment, shower and daily hair wash. Again, you got to make sure no water is entering the tracheostomy. Again, that’s a skill that only CCRNs have. Bowel motion assessment, teeth brushing, again, high-risk, high-aspiration risk procedure. Hoist transfer to bed for dressing. Dressing and full skin assessment. Hoist transfer to wheelchair. Tracheostomy dressing and tape change. Clinical observation and assessment, medication administration, breakfast preparation and feeding, restocking of consumables, and so forth. And then going out, of course.

How many times have I mentioned high-risk now. Quite a few times because it is high-risk. So daytime is no different. Peter has naps during the day and requires ventilation. Eating happens multiple times. Again, high-risk. Community outings require airway management capabilities and so forth. Work from home days still need full support. Any deterioration in condition requires immediate assessment and escalation. There is no time when Peter doesn’t need a CCRN available immediately. Not for 1 minute, not for 10 minutes, not we’ll call an ambulance. Because I can tell you from experience in an ideal world, let’s just say you call the ambulance and the ambulance arrives in 5 minutes. The ambulance walks into the room, sees the ventilator, sees the tracheostomy, and goes like, “Oh, that’s not part of our skill set.” And I can tell you that I’ve seen that with my own very eyes. Ambulance crews have no idea about ventilation and tracheostomy. I’m not making it up.

Once again, cost effectiveness, 24/7 CCRNs care. It’s not expensive because an ICU bed, $5,000 to $6,000 per bed day versus Intensive Care at Home is about half of that. Preventable hospital admissions, the money has already paid off. That hospital admission will cost way more money than Intensive Care at Home, plus quality of life, independence, ability to work and contribute to society. And one of the biggest myths about home ventilation with tracheostomy is that patients become homebound. This is absolutely false when you have proper support. Our clients have community access. Peter works from home, attends church weekly, goes shopping, visits families and friends, plans accessible travel. Other clients we support go to the beach, go to restaurants for meals, go to the movies, sport events, family celebrations, school attendance for pediatric clients, university classes, employment, and so forth. This is what proper Intensive Care at Home looks like and what proper 24/7 CCRN support enables.

How do we make it safe? 24/7 CCRN accompanies all outings, portable suction equipment, backup tracheostomy tubes, backup ventilator, bag valve mask resuscitator, mobile oxygen if needed, pre-planning for accessibility, risk assessments for the activities. The psychological impact of that? Living at home with community access versus institutionalized care. Maintain dignity and independence, preservation of family relationships, sense of purpose and contributions, mental health benefits, social connections, and a hope for future. And this isn’t just about keeping people alive; it’s about keeping them living. So, if you’re watching this and you’re thinking, my loved one needs this for ventilation, tracheostomy, muscular dystrophy, or any other condition, go and check out intensivecareathome.com or intensivecarehotline.com. Intensivecarehotline.com for families currently in ICU, intensivecareathome.com for discharge planning inquiries.

We walk you through every single step. We’ve done it many, many times, and we’d help you develop the care plan. We’ll help you with getting the funding. Do not worry about the funding. We’ll help you with that step by step. We’ll help you create a team of CCRNs that you are comfortable with. We help you with staff selection. We involve you in staff selection. We coordinate with the hospitals. We train the staff just for your family member. And the type of conditions we look after, muscular dystrophy, motor neuron disease or ALS, spinal muscular atrophy, spinal cord injuries, neurological conditions such as cerebral palsy, Rett syndrome, and so forth. Any condition really requiring long-term ventilation with or without a tracheostomy. So, we’ve covered a lot today, and I want to thank you for watching this.

Again, go to intensivecarhotline.com and intensivecareathome.com. I do these YouTube lives once a week, and I will talk to you again next week around the same time. The evidence is clear. Home mechanical ventilation guidelines are the evidence-based that you can find at intensivecareathome.com versus long-term ICU stay or ICU telling you the only option for your loved one is to die. Don’t give up hope. We are here to help you every step of the way. Go to intensivecarehotline.com and intensivecareathome.com.

Reach out on one of the numbers there, or send us an email to [email protected] or to [email protected]. With all of that said, thank you very much.

Like, comment, subscribe to my YouTube channel, like the video, click the notification bell, and share the video with everyone that will benefit from this. And thank you once again.

Have a wonderful week, a wonderful weekend.

Now, with Intensive Care at Home, we are currently sending our ICU and critical care nurses into the home, 24 hours a day. We are providing the following:

• Home care services for ventilated adults & children with tracheostomies with critical care nurses 24 hours a day
• Genuine alternative to a long-term stay in intensive care or at long-term acute care
• Tracheostomy care for clients without ventilation
• Home care services for patients on non-invasive ventilation such as Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure)
• Home TPN (Total Parenteral Nutrition), which is also known as IV nutrition
• Home IV potassium and home IV magnesium infusions, IV fluids, and IV antibiotics
• Providing central line management, PICC (Peripherally Inserted Central Catheter) line management, Hickman’s line management, as well as port management at home.
• Providing nasogastric tube and PEG (Percutaneous Endoscopic Gastrostomy) tube management at home
• Use cough assist machines for our clients for airway clearance at home
• Palliative care services at home
• Ventilator weaning at home

We’re also sending our critical care nurses into the home for emergency department bypass services. We have done so successfully as part of the Western Sydney Local Area Health District, their in-touch program, saving approximately $2,000 per patient that we keep at home, instead of them going to an emergency department.

That also means, we’re also in a position to cut the cost of an intensive care bed by around 50%. An intensive care bed costs between $5,000 to $6,000 per bed day. Our services costs between $2,500 to $3,000 per bed day, and we’re freeing up the most sought-after bed in the hospital, which is the ICU bed. Most importantly, we’re improving the quality of life for patients and their families, which is a win-win situation for all stakeholders. Of course, quality of life is much improved surrounded by families and by a team of dedicated intensive care nurses in the home care setting instead of in an intensive care unit.

With Intensive Care at Home, we are currently operating all around Australia in all major capital cities as well as in all regional and rural areas. We work with NDIS (National Disability Insurance Scheme) clients all around Australia, TAC (Transport Accident Commission) and WorkSafe in Victoria, Department of Veteran Affairs (DVA) all around Australia. Our clients and we, as a service provider, have also received funding through public hospitals, private health funds, as well as Departments of Health.

We are having policies and procedures for Intensive Care at Home nursing and we’ve built all the intellectual property for Intensive Care at Home since 2012. No other provider in Australia has created more intellectual property when it comes to Intensive Care at Home nursing than we have. This puts us in a position to employ hundreds of years of critical care nursing experience combined in the community. No other service provider in 2025 employs a higher skill level in the community than we do, which enables us to look after the highest acuity adults and children in the community in Australia safely.

If you’re at home already and you’re watching this, or you’re stuck in an ICU long-term, or if you’re going to the hospital and ED all the time, and you realize that you don’t have the right level of support at home, or if you are stuck in an ICU, I’ll give you a real-world example today, how we can help you.

One of our first clients when we first got started in 2012, was a client who was at home initially on a ventilator with a tracheostomy with a support worker model 24/7. Of course, support workers are not equipped to look after a client at home on a ventilator with a tracheostomy. That is dangerous and it’s simply negligent. Having support workers looking after a client at home on a ventilator with a tracheostomy is like flying the airplane with a cabin crew instead of the pilot. Because anyone on a ventilator with a tracheostomy is at very high risk of medical emergencies 24/7, or even at high risk of dying if they don’t have a team of dedicated critical care nurses looking after them 24/7 at home. This is actually evidence-based and is documented in our Mechanical Home Ventilation Guidelines that you can find on our website at intensivecareathome.com.

Think about it, in an intensive care unit in a hospital, you wouldn’t have support workers looking after your critically ill loved one or after any critically ill patient on a ventilator with a tracheostomy. So, why would anyone in their right mind do that in the home care environment in the community?

So, this client at the time found out about us eventually, and the ICU that he was basically living in also knew about us and eventually reached out to us. We were proving our concept with this client very fast. When we worked with this particular client, we sent him critical care nurses, 24 hours a day. He never ever went back into ICU ever again, as long as we were working with this client.

We can do the same for you if you’re not safe at home and help you with keeping you at home predictably. Otherwise, we would not be in business. Again, the same is applicable for those stuck in an ICU, similar to this case study that I’ve just given you, or if you’re going back to ED all the time, please reach out to us. We can help you with taking you through the right steps, including how to get funding with different funding bodies.

This is also why we are providing NDIS Support Coordination. We have a team of NDIS Support Coordinators, and they have a wealth of knowledge. I’ve done an interview with Amanda Riches, one of our NDIS support coordinators, and I’ll put a link to an interview with Amanda in the written version of this blog. We’re also providing TAC case management and WorkSafe case management in Victoria with Lucy McCotter.

If you’re an NDIS support coordinator or a case manager from another organization watching this, and you’re looking for nursing care for your participants, please reach out to us as well. If you need more evidence for nursing care, we are also writing NDIS nursing assessments with legal nurse critical care consulting nurses.

If you are a critical care nurse and you’re looking for a career change and you want to join a very progressive, dynamic, and high performing team of critical care nurses in the community, we’re employing hundreds of years of critical care nursing experience combined. You can join this high performing team if you are a critical care nurse.

If you are looking for a career change as a critical care nurse, we’re currently hiring for jobs for critical care nurses in Melbourne, Sydney, Brisbane, in Albury, Wodonga, in Bendigo, in Geelong, in Warragul in Victoria. If you have worked in critical care nursing for a minimum of 2 years pediatric ICU, ED, and you have already completed a postgraduate critical care nursing qualification, we will be delighted hearing from you.

I do have a disclaimer though, because we are offering a tailor-made solution for our clients, which includes regular staff, our clients also do want the same staff coming over and over again because they are so vulnerable and so special. That’s why we need regular staff. So, if you’re looking for agency work, where you can come and go, this will not be the right fit for you. We are looking for consistency and our clients are looking for consistency. So please, only apply with us if you can give us regular and consistent availabilities for shifts, and you’re really keen on building solid relationships with us and with our clients.

If you’re an intensive care specialist or an ED specialist, we also want to hear from you. We’re currently expanding our medical team as well. We can also help you eliminate your bed blocks in your ICU and in your ED for your long-term patients, or for your regularly readmitting patients with our critical care nursing team at home. We’re here to help you take the pressure off your ICU and ED beds. In most cases, you won’t even pay for it. Even if you do pay for it, it is so much more cost-effective than what you’re paying for in ICU and ED, and you get the same level of care.

If you’re a hospital executive watching this and you have bed blocks in your ICU, ED, and respiratory wards, or for home TPN, please reach out to us as well. We can help you eliminate your bed blocks very fast.

If you’re in the U.S. and in the U.K. and you’re watching this, and you need help, we want to hear from you as well. We can help you there privately with one-on-one consulting and with hiring nurses privately.

Once again, our website is intensivecareathome.com. Call us on one of the numbers on the top of our website, or simply send us an email to [email protected].

If you like my videos, subscribe to my YouTube channel for regular updates for families with Intensive Care at Home and intensive care. Click the like button, click the notification bell, share this video with your friends and families, 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 I will talk to you in a few days.