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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 NSW SERVICE MANAGER KANEEZ HAKIM

You can check out last week’s blog by clicking on the link below this video:

https://intensivecareathome.com/interview-with-intensive-care-at-home-nsw-service-manager-kaneez-hakim/

In today’s blog post, I want to answer a question from one of our clients.

Will a Tracheostomy and Ventilation Work in the Community?

Good morning, good evening, good afternoon, wherever you are. Thank you for coming onto this livestream. My name is Patrik Hutzel, and I’m your host of today’s livestream. If you’re watching this in replay, I want to welcome you as well. So, this is another Intensive Care at Home livestream.

Today’s livestream is about, “Will a tracheostomy and ventilation work in the community?” So, coming back to a couple of topics from the last two live streams, the first topic that I talked about in this series was, “Will a tracheostomy work?”, and this is a question we get quite frequently from families in intensive care, is a tracheostomy going to work? I broke that down in much detail a couple of weeks ago, and you can go back to that livestream. It would be now being published here on the YouTube channel of course, but also now in our intensivecareathome.com website.

So this is a question we get quite frequently, is a tracheostomy going to work? I broke it down in much detail on that live stream a couple of weeks ago, and I explained it when a tracheostomy is working in ICU, what’s the purpose? I explained in much detail that a tracheostomy in ICU should always be temporary, but obviously, there are outliers, there are exceptions to the rules, which then led me to my next YouTube live about this specific topic, which was last week, where I talked about, “Is a tracheostomy going to work in the community?” I broke that down in much detail and answered some questions there. Today, we’re taking this further.  Today, we’re talking about, “Will a tracheostomy and ventilation work in the community?” Again, these are all real questions from real clients or readers that want to know about this particular subject.

Now, before I go into today’s topic, you may want to find out what makes me qualified to talk about today’s topic. So again, my name is Patrik Hutzel. I’m the founder and managing director of Intensive Care at Home, a very unique and highly specialized home care nursing service, where we send intensive care nurses into the home, to bring intensive care into the home, to replicate an ICU bed in the community, to bring a genuine alternative to a long-term stay in intensive care into the community. We have been successfully providing Intensive Care at Home services in Australia since 2013.

Now, prior to that, I was working in the Intensive Care at Home space in Germany in the early 2000s, where I was part of a startup service in Germany where we were the pioneering service in Germany setting up Intensive Care at Home. So, I come with extensive experience in this space. On top of that, I have worked for over 20 years in intensive care as a nurse, as well as 5 years of that time, I’ve spent as a nurse unit manager in intensive care. So, I have combined both worlds.

I am also the founder and director of Intensive Care Hotline, where we consult and advocate for families all around the world in intensive care . You can find more information there at intensivecarehotline.com.

With Intensive Care at Home, we employ hundreds of years of intensive care nursing experience in the community, or critical care nursing experience in the community. I do believe that is unmatched by any organization worldwide where we bring that level of expertise into the community. Currently, we are operating all around Australia, where we send our nurses into the home. This includes rural and regional areas, as well as metropolitan areas of course. We are the only third party accredited Intensive Care at Home service in Australia. I have yet to find somebody else. If there is somebody else, I would really like to hear from you. If you think you can match what we are doing with the same level of credibility and same level of expertise, then we do it.

Now, we work closely with NDIS (National Disability Insurance Scheme) support coordinators. Most of the funding for our clients is coming through the NDIS these days, but we are also a TAC (Transport Accident Commission) approved service provider here in Victoria. We are an iCare approved service provider in New South Wales, as well as NIISQ (National Injury Insurance Scheme in Queensland), as well as the DVA (Department of Veteran Affairs) Australia wide. We have also received funding through departments of health as well as through public hospitals.

Without further ado, let’s talk about today’s topic, “Will a tracheostomy and ventilation work in the community?” Now, if you have any questions, please type them into the chat pad and I will answer them, of course. I can also get you live on the stream here. If you are wanting to ask a question live on the stream, I can get you on the stream and you can ask a question here, or you can just type them into the chat pad.

Now, let’s get back to today’s topic, “Will a tracheostomy and ventilation work in the community?” Also, we’ll probably be going for a good hour. I will talk about today’s topic, but then I will also answer questions that came in during the week. So, we get lots of emails, phone calls and whatnot. So, I have a number of questions that I want to answer prepared as well.

So, will a tracheostomy and ventilation work in the community? Once again, I’ve done a YouTube live two weeks ago, “Will a tracheostomy work?” That was mainly focused on will a tracheostomy work in intensive care? I broke it down in much detail saying that a tracheostomy can be the right thing to do for certain patients in intensive care, but the ultimate goal should always be to have the ventilator removed, have the tracheostomy removed. That should always be the ultimate goal. If that can’t be the case, then the next step is, can people go home with a tracheostomy?

So last week, I broke down, will a tracheostomy work in the community? Yes, a tracheostomy will work in the community if certain conditions are met, such as 24-hour intensive care nursing with third party accredited service provider that can replicate the intensive care nursing that needs to happen with tracheostomy patients.

Today, we’ll go down this topic even in more detail, “Will a tracheostomy and ventilation work in the community?” So obviously, with Intensive Care at Home, we are highly specialized in ventilation and tracheostomy in the community for adults and for children. So therefore, I can confidently say we are the experts in this field in Australia. Again, we are third party accredited to provide Intensive Care at Home, which includes ventilation and tracheostomy. I’m not aware that any other service provider in Australia has this level of expertise, has the level of accreditation, has the know-how and has the built-in intellectual property that we have built around taking patients home from Intensive Care at Home and keep them home predictably, improve their quality of life, in some situations, improve their quality of end-of-life, also improve the quality of life for patients and for families, of course, improve the outcomes for hospitals as well, because not only do we give hospitals and patients and families what they want, we’re also decreasing the cost of an intensive care bed by about 50%, which makes it a win-win situation for everyone.

Furthermore, we are freeing up much needed intensive care beds that can be used for intensive care or critical care patients in dire need of critical care, whereas we are focused more on the long-term patients in intensive care, adults and children.

But then the question is, when you look at outdated intensive care or ICU paradigms, some ICUs might still tell you, “Well, there’s two ways for a patient to leave intensive care, one way is to leave intensive care alive and go to a hospital ward, hospital floor, and the other trajectory for an intensive care patient is to die.” Well, I object strongly and I say, “Well, we’ve created a third predictable pathway,” which is for intensive care patients to go home if they meet certain criteria, i.e., they are long-term ventilated and have a tracheostomy, for patients with spinal injuries, for patients with motor neurone disease, for patients with cerebral palsy, for patients with Rett syndrome, for patients with spinal muscular atrophy, for patients in palliative care after MVAs, motor vehicle accidents, and the list goes on.

So then, what needs to be in place for a tracheostomy and a ventilator to work in the community? Well, first of all, what needs to be in place is a third-party accredited service that can provide Intensive Care at Home. Anything less than that will put you or your loved one’s life at risk. I will come to the risk and why it puts people’s lives at risk in a minute, and I will break it down with some case studies for you.

So, if you want to take a patient up from intensive care on a ventilator with the tracheostomy, they can’t go on a ward or on a floor in a hospital setting because simply, the ward or a floor doesn’t have the intensive care skills, nursing, and medical skills, to look after a patient on the floor because they’re on life support. Whereas with Intensive Care at Home, we have the skill to make that happen because we do have the Intensive Care at Home nursing skills, and we also know how to tie in with doctors, medical professionals, and we know what needs to happen.

But more importantly, we have a framework. We have policies, we have procedures that have proven to work. Basically, what I’ve done when I first started Intensive Care at Home, I pretty much took what I knew from Intensive Care at Home in Germany and adapted it to the Australian environment. Clearly, the most important ingredient here is to have 24/7 critical care nurses with a minimum of two years critical care nursing experience, 24/7 in someone’s home to replicate the ICU bed in the community, that is absolutely critical. Anything that says, “Oh, no, this can be done with general registered nurses, this can be done with support worker that we just pick off the street,” with all due respect to the individual, which I’ve seen as well, is potentially committing a crime here, because people have died because of that lackadaisical approach.

So again, it’s safe if you use policies, procedures, if you use a third-party government accredited quality manual, if you use all the expertise that we’ve built in the last 10 years, and if you use, more importantly, the Mechanical Home Ventilation Guidelines. Now, if you look on our website at intensiveatcareathome.com, you will see a section there, the Mechanical Home Ventilation Guidelines. Now, these guidelines are a result of over 25 years of Intensive Care at Home services in Germany, and they’re also a result, or a proven result and outcome, out of over 10 years Intensive Care at Home nursing in Australia.

So, what do these guidelines say? These guidelines say that in order to take a critically ill patient home from intensive care with a tracheostomy and a ventilator, one needs a 24/7 Intensive Care at Home nursing roster, with critical care nurses that have a minimum of two years ICU experience, ICU or ED experience, or pediatric ICU experience, or pediatric ED experience, and that’s what we’ve done for the last 10 years. That’s what’s been happening in Germany for the last 25 years. Lo and behold, it is safe, it is proven, it is evidence-based, and it provides this win-win situation that I’ve been talking about all the way along. It also means the guidelines also requests that only accredited health services can provide this service Intensive Care at Home.

So, when you look at our results that we’ve been delivering to patients, families, and hospitals in the last 10 years, it’s crystal clear, we have two KPIs, and I believe those KPIs provide a win-win for everyone. The number one KPI (Key Performance Indicator) is to have zero non-elective readmissions back to hospital. If we can’t provide that, we couldn’t deliver on our promise. So, that’s number one.

Number two KPI that we have is, have all shifts filled. Very simple. Very simple KPIs, not easy to achieve, but we are achieving them. So, it’s really important that you understand what goes into delivering this service Intensive Care at Home.

Now, also, I should say, the evidence-based Mechanical Home Ventilation Guidelines demand ICU nursing staff or critical care nursing staff with a minimum of two years critical care nursing experience. Now, the reality is, because we employ hundreds of years of critical care nursing experience in our service, and therefore, have built a huge library, if you will, of Intensive Care at Home intellectual property. The reality is, the average CCRN on our books probably has more than 8 to 10 years of critical care nursing experience. We have some amazing nurses on our books, all of them are amazing, but we have nurses on our books that’ve worked in critical care for 30 years, and they’ve worked for us for the last five years or so. So, we have star performers on our team that I believe other services can’t attract that level of expertise to what they do, what level of service they provide. Whereas, I believe, we have a real edge here for hospitals as well because you can rely on our highly skilled, highly motivated, and highly knowledgeable Intensive Care at Home nursing workforce.

So for anyone watching this, whether you are a patient in ICU, or whether you’re a family, you have a loved one in ICU and you’re thinking about taking up the service, or you might be watching this and you might be at home and you might think, “Oh, my services that I’ve got, the support that I’ve got is very dangerous. I’m not happy.” You should be contacting us. You might be an NDIS support coordinator watching this, and you might be thinking, “Oh, I’m wondering what’d I do with my participant who is in intensive care as a tracheostomy or a ventilator. How will I get them home?” You might be wondering as an NDIS support coordinator, “How can I increase the level of skill that my participant has at home?” Because you can probably see that it’s not working, and you probably recognize that if you don’t have an accredited third-party and NDIS accredited Intensive Care at Home nursing service, you will see that client’s lives are at risk. So, that brings me to the risk.

So, in 2020, there have been three NDIS participants that have died because they have not been looked after as demanded by the Mechanical Home Ventilation Guidelines. The Mechanical Home Ventilation Guidelines were violated, and that led to three NDIS participants dying. So, what am I talking about specifically? So, two out of three NDIS participants, all of them had tracheostomies. One of them was ventilated, two had a tracheostomy. Now, all of them died during times when the Mechanical Home Ventilation Guidelines were violated, i.e., no funding was provided 24/7 for those clients, as demanded and evidence-based per Mechanical Home Ventilation Guidelines.

All those clients passed away during times when critical care nurses were not on the scene, were not funded. Either support workers or family members, or even general registered nurses, without intensive care experience could not manage medical emergencies for these clients. They were medical emergencies all related to the tracheostomy and/or ventilator, and of course they couldn’t manage it. That’s why patients in intensive care are looked after by critical care nurses.

So, let me ask you this, you’ve seen your loved one in intensive care, and you’ve seen that the safest option for them is to be looked after by a critical care nurse, so why should that be any different in the community? Why should that be any different in the community?

So we are, as far as I’m aware in Australia anyway, we are the only organization that brings quality standards in the community when it comes to mechanical ventilation, tracheostomy, when it comes to Intensive Care at Home. There is no other organization that brings quality standards in the community. When you look at the NDIS (National Disability Insurance Scheme), the NDIS, for example, says on their website that they have e-modules, e-modules, let that sink in, for support workers that can be trained on ventilation and tracheostomy.

Now, that takes a minimum of five years for nurses to become competent with. They have to go through a three- or four-year university degree as a bachelor of nursing, then they have to do the training in hospitals. Then, they have to go to intensive care, or ED, get more training, and do a postgraduate degree. So, that’s a five-year exposure in that field before they can practice independently, and the NDIS thinks they can just put a couple of e-modules online that people off the street can go through and then they’re competent in intensive care.

Now, if that was the case, why are hospitals not using e-modules, train people off the street, and send them to intensive care and let them do intensive care nursing work? Why can’t intensive care patients go on a hospital ward, hospital floor, be looked after by support workers? Well, the reality is because they can’t, because it’s almost like a death sentence when support workers or general registered nurses do, as has been shown in the past, that people have died.

Now, out of the people that I’ve talked about that have died, one was a five-year-old child, five-year-old boy, the other one was a 17-year-old girl, four weeks away from having the tracheostomy and the ventilator removed. The other NDIS participant that passed away was a 60-year-old lady. All have passed away because of negligence from the NDIS, because of the ignorance of medical evidence and disability evidence for these participants, that they need an intensive care nurse or critical care nurse, 24 hours a day. We hope that the people in charge at the NDIS sleep well at night, those that have made those decisions at the time, despite overwhelming evidence. I hope that these people sleep well at night.

So, if you’re having anything less than 24-hour intensive care nurses at home, you are putting yourself or your loved one at risk, irregardless of what anyone else says. On top of the three participants that I’ve talked about, we know of at least three other clients in the community that we weren’t directly involved with, but we know of at least another three participants in the community that died because support workers, or even general registered nurses, without intensive care nursing experience could not manage medical emergencies in the community, and that is really the main skill, that in intensive care, if there’s a medical emergency, you have 25 people coming, running after, someone presses the red button, the emergency button. Whereas in the community, you can’t just call a MET (Medical Emergency Team) call team like you can in the hospital. In the community, you have to manage it by yourself, but that’s why you need critical care nursing experience.

So, this is going further. I’m just putting out the framework, what this is all based on and how to make it safe. Of course, there’s more to it. We have to help you select the right equipment, we can help you with all of that. We’ve set up a ton of clients at home with the right equipment, more importantly, with the right staff and with the right team, train the team on the intricacies of a particular client, train the team on the routine of the client, train the team on what does the client want, community access for clients. This is way more than will tracheostomy and ventilation work in the community, this is taking intensive care to another level.

When you look at intensive care in hospitals, patients are confined to their bed space, or cubicle, or whatever you want to call it. Whereas in the community, when we take clients home, we are not letting clients sit in their rooms. We take them out, we give them community access. We improve their quality of life, tremendously.

So, we have clients that go from ICU, they go back home, and they go back to work, or go back to Uni, go back to Kindy, go back to school, whatever floats their boat really. Very, very different compared to ICU, where people only look at the clinical and don’t allow people to be themselves. How important is it for someone to be themselves? How important is it for someone to live their life with as much control as possible? Which is what we are doing, which is what we are living and breathing here at Intensive Care at Home.

It’s important that you build a team of professionals around you, and that starts, that keeps me coming back to, if you’re watching this and you’re an NDIS support coordinator here in Australia, or we would love to talk to you because many NDIS support coordinators, they don’t have the level of expertise that’s needed really to deal with ventilation and tracheostomy, life support, and technically, intensive care patients because we at Intensive Care at Home, again, we employ hundreds of years of critical care nursing experience. We also have doctors on our books or in our network that can help with the advocacy. So I really encourage you to reach out to us, to talk to us, so that we can help you with the level of funding that’s needed. We wouldn’t be in business if the NDIS wasn’t funding the intensive care nurse in the community. That’s a fact.

So what else? Then it’s also important, once you’re at home, it’s obviously also very important that you have a stable team. You don’t want to have a revolving door like in intensive care, where you have one day you might have Mary look after you, next day you have Peter, and then you’ve got Amanda, and then you’ve got Tracy, and then you’ve got Becky and whatnot, and you never see these people again. Whereas for us, with Intensive Care at Home, our goal is always to have a stable team and select the people that are a good fit for you and your family. Only then can we make it work and keep you at home predictably. Again, coming back to our KPIs, no non-elective readmissions back to hospital, and having all shifts filled, critically important.

So, what do you think so far? What are your questions? Type them into the chat pad, or as I said, I can also get you live in on the show, but really want to see your comments. Even if you’re watching this on replay, leave your comments and I will get back to you maybe with another quick tip video, or I’ll answer the question one way or another, and go from there.

Also, if you’re a hospital executive, for example, if you’re an intensive care specialist and you’re watching this, if you are a critical care nurse in a hospital, you know the patients that are “blocking” your beds, you know who has been in your ICU for days, weeks, months on end, or who’s a “frequent flyer.” You know who that is, and you know that a service like ours can help you tremendously, it can help the client, the family tremendously. Again, if you’re a hospital executive, you know where your bed blocks are, and they are predominantly in ICU or ED.

Now, on that note, talking about ED or emergency department or emergency room, with Intensive Care at Home, we are now also providing an emergency department bypass service for the Sydney Western Local Health District. So, we are basically sending critical care nurses into people’s homes, but also into aged care facilities, to keep people out of the emergency department. So, our skills are not only in-demand for keeping patients out of intensive care, they’re also in high demand to bypass EDs and bring ED into the home, bring the emergency room and the emergency department into the home. It all makes sense. It is all common sense. Why would you have someone go to ED if they can have the same treatment at home? Why would you have someone stay in intensive care or go into intensive care if you can have the same treatment at home? It does not make any sense. So, I hope, for today, this helps you to understand, will a tracheostomy and ventilation work in the community?

So now, let’s answer some questions that have come in during the week. I just very quickly need to bring up my emails. So, here is a question that came in from Sumeet. Sumeet writes, “My name is Sumeet. My mother had an accident while she was on a motorbike on November 22. We ran to the hospital where the doctor conducted a CT of the brain. They told us that she needs brain surgery immediately to release the pressure off the brain, so he performed bifrontal craniotomy that night only. She was in ICU originally for 20 days, and the tracheostomy was put on after 72 hours of brain surgery.

We moved her to home ICU care in India because of the hospital’s large bills. After two months of brain surgery, she was weaned off from the ventilator and slowly started to open one eye. Later on, she also started to open her second eye. It has been more than seven months now. She’s in bed and she’s not conscious, not following any commands. She had a brainstem hemorrhage.

We, as a family, are going through a very difficult time in our lives. Please guide us what we should do so that she can become conscious, and tracheostomy can be removed. What are the chances of her recovery? We are giving physiotherapy to her at home every day. Is she in a coma or a vegetative state?

Progress from the last seven months are as follows. One, random toe movement. Two, random neck movement. Three, when physiotherapist gives pain on muscles, she pulls her legs and hands. Number four, sometimes shivering on the left hand.

Regards, from Sumeet.”

So, Sumeet, I’m very sorry to hear about your mom’s situation. Now, I guess the question here is, what are your mom’s goals of care? I’m very pleased to hear that you’ve taken her home with Intensive Care at Home in India. I know of great companies in India that provide the same level of service than we are providing here. So, it sounds to me like you are in good hands here, and I only congratulate you on doing that.

Now, to answer your question, what’s the outcome here? The outcome is, what are the goals of care for your mom since the accident? Do you want her to live at all cost? Do you want to keep waiting and keep doing the stimulation? At the end of the day, you’re asking, “Is she in a coma or in a vegetative state?” Now, I think at the end of the day, this is probably wordplay. Is she in a coma or in a vegetative state? I think what I would bring it down to is, what is her Glasgow Coma Scale? Is her Glasgow Coma Scale a three? It’s not a three if she’s responding to pain. It’s at least a four, just responding to any… it’s at least a five if she’s opening eyes spontaneously.

So, the question is, do you want to give up? You got to get clear on what are the goals of care for your mom? Did she say anything before the accident? What she would want if a situation like this ever came up? So, I encourage you to be very clear on the goals of care because everything else, I believe, you’ve done incredibly well, and you are very much confirming that Intensive Care at Home is a viable option no matter where it is. Whether it’s here in Australia, whether it’s in India, doesn’t really matter.

So, you got to get clear on the goals of care. Is palliative care, for example, what your mom would want in a situation like that. She had some time at home, things don’t seem to be improving, do you want to think about palliative cases? Is this a discussion you want to have with the rest of your families? Is this a discussion you want to have with your mom? Can you talk to her? Can she give you any sign with maybe blinking her eyes, I don’t know. Think about this carefully. I do believe that the goal is always to preserve life. By the same token, maybe your mom wouldn’t want what she’s going through at the moment. So, think about this very clearly on what you want, and I’m certain you will find the right answers to this.

Let’s move on to the next question. So, here is a suggestion from Carly who says, “Using a high frequency chest wall oscillation shaker chest vest, in addition to administering a sterile saline bolus directly into the tracheostomy to help loosen thick mucus to make coughs more productive in non-ambulatory bedridden loved ones who are at risk quite like this.” Absolutely. This is a very good point, Carly, because again, this is what we are doing at home with our home care clients, especially if they are ventilated and have a tracheostomy. We use often what’s called a cough assist machine, or we are using sometimes a second ventilation mode, such as a hyperinflation mode, and we are using the saline bolus to mobilize secretions in combination with the cough assist machine.

Then Carly also says, “Just getting your insurance approval on many medically necessary equipment is difficult, especially at home. You have to advocate for your loved ones daily and not let denials of treatments or supplies stop you from doing everything necessary to give them a better quality of life at home.” Absolutely, Carly. I think this is a very, very good point. Here is why, what we have found, we can advocate for our clients until we get blue in our face all day long, and we do it, I believe, really well because otherwise we wouldn’t be in business.

However, here’s the thing, I tell you one thing that all of our clients have in common, they will not take no for an answer. What that means is, no matter what the NDIS or any insurance body will tell them, our clients say, “No, I’m not happy with that.” Here is the evidence why I need a critical care nurse, 24 hours a day. You’re paying for a critical care nurse at the moment in ICU anyway, you might as well pay for that at home and save half of the cost. So keep that in mind that, really, you, as a family, you also have to take responsibility for outcomes. It’s really important that you take responsibility for outcomes. If you don’t, it’ll be very difficult for you to take up the fight that’s often needed with the NDIS or with other funding bodies. It’s critically important. The best clients that we have are the ones that do not take no for an answer. They always get what they want, always get what they want.

Next question that comes from Dulo. Dulo says, “My family member is intubated in intensive care, and I do not know what to do to be sure they’re giving him all he needs.” Okay, great question, Dulo. What can I say about that? What I can say about that is what I’ve been saying for the longest, that the biggest challenge for families in intensive care is that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care, and this is exactly what you are dealing with.

So, how to go about it? Well, first off, start reading our articles and hundreds of case studies at intensivecarehotline.com. Next, get professional consulting and advocacy. We provide that at intensivecarehotline.com, where we provide a professional consulting advocacy service for families in intensive care. We help you and your families get better outcomes, get peace of mind, make informed decisions, have control, power, and influence.

How do we do it? We do it by talking to doctors and nurses directly advocating for your loved one, we do it by looking at medical records, we do it by representing you in family meetings, we do it by setting you up with the right questions to ask, if that’s what you want, if you don’t want, ask us on your behalf. You are very right in saying, “How can I make sure that they’re doing all the right things?” Well, the first thing you need to know is, get access to the medical records and have us look at the medical records so we can tell you whether they’re doing the right thing or not. We can also talk to the doctors and nurses directly. If you have any meetings with them, I can be there over the phone as well. So go and check out intensivecarehotline.com and go from there.

Next, another question from Elisa. Elisa says, “My husband has pneumonia after hip replacement surgery. Now, they want to stop life support tomorrow. I told her it’s too soon.” Now, you haven’t shared, Elisa, when your husband had hip surgery. Is it two days ago? Is it two weeks ago? Is it two months ago? You haven’t shared any of that. So in any case, stopping life support without your consent is illegal, could be perceived as murder, could be perceived as euthanasia. So if you don’t want this, then you should tell them on certain terms. You should also show them the legislation, show them the law. There is no law, as far as I’m aware, that allows doctors and nurses just to kill someone because they feel like it.

So again, that’s something we help our families or our clients at intensivecarehotline.com. We’ve saved lives through our advocacy. We’ve saved lives with Intensive Care at Home, but we’ve also saved lives with our advocacy. So, talk to us, making sure that your husband is not going to die. Once again, we have saved many lives through our clinical insights, combining them with our knowledge about patients and families’ rights. You need both. You need both. If I was to talk to a doctor in intensive care with you, you will see that I will be asking questions you haven’t even considered asking.

Next question comes from Yvonne. Yvonne says, “My husband has been in a coma now for two weeks. His brain pressure was 60 and he has some brain swelling. The brain herniated at the bottom. The fluid still continues to flow out, so brain fluids like CSF. His eyes flutter sometimes. His father said his son opened one eye slightly twice. His eye movements are not always a flutter but movement.

His father today, who’s also his next of kin, or power of attorney, has signed a DNR (Do Not Resuscitate) because he’s been told, “this is the best his son will get.” He was diagnosed with multi-organ failure. Now, he was diagnosed with MOG.” What does Yvonne mean by MOG? “I myself believe my grandson…” Oh, this is the grandson, I’m sorry.

“I believe myself my grandson had possibly a blood clot which caused his headache to turn into a migraine. The pressure was so bad at 60 that my grandson passed out. Both hemispheres of the brain had swollen and herniated. The doctor says his brain stem, via MRI, that it is dead. I was told there was some faint electrical signs on the outside of his brain, but not in the middle of the brain. I am wondering if all medications were stopped, could he possibly regain consciousness at least to give us a sign? He’s still here but trapped inside, not able to talk.”

So, could he possibly regain consciousness if all medications are stopped? Look, it really depends. Will the brain pressures go up again if the medications are stopped? I also need to find out what does MOG stand for? You’re saying he was diagnosed with MOG. Myelin oligodendrocyte glycoprotein, antibody demyelination of the myelin sheaths. So, that’s a rare neurological disease and probably a disease that could limit his movement, maybe similar to ALS (Amyotrophic Lateral Sclerosis) or MND (Motor Neuron Disease). Coming back to your question, Yvonne, about your grandson, under no way, shape, or form should your grandson’s father sign a DNR, and believe just everything they’re saying. You haven’t shared how long your grandson has been in ICU for. Has it been two days? Has it been two weeks? Has it been two months?

Some of my answer would depend on the length of time he’s been there, but under any circumstances, should he have a DNR signed, maybe he will come around eventually and he can then make his own decision. Most people want to live. If he’s had high brain pressures, chances are he might need weeks, potentially months for his brain to recover, if it’s possible at all, and now, making a decision prematurely could lead to your grandson dying. So problem is if he has signed a DNR, you should just let them know very quickly that he changed his mind, that he made a mistake, and go from there. It’s as simple as that.

Then here’s another question from Nancy, “I surely don’t want my grandson to be trapped within and not able to let us know. He’s locked inside himself.” Yes, who can actually say that your grandson can’t hear you? No one can actually say that. That just because he had a massive brain injury that the brain won’t recover, and that at least he has some form of quality of life, because the hospital will most likely try and push you and say, “Oh, well, you should remove life support because your grandson won’t have any quality of life.” Well, what is quality of life? What is it? It is a very subjective term, a very subjective measure, and you shouldn’t get bogged down by the negativity of the intensive care, you’ve got to give it some time.

What’s the rush in withdrawing life support here, Yvonne? Why can’t they just keep going on and see how things go? Plenty of time to talk about end of life. You always have to think about what’s their agenda. Is their agenda to kill your grandson? I don’t know. Maybe I’m exaggerating here, but you have to think those questions through and go from there.

Now, let’s move on to the next question from Prasan, who says, “My daughter, four years old, is struggling with severe traumatic brain injury, as well as cardiac arrest, while surgery is well. She has been on ventilator support from Day 1. She fell down from the third floor on June the 22nd. Today is the 20th of August, she’s getting seizures  from the past three days. She was in sedation mode most of the time through the ventilator. Can’t able to breathe from respiratory. Please suggest which kind of treatment helps for her.”

Well, if she’s got a traumatic brain injury, the question is, what have they done from a surgical point of view? Have they evacuated the bleed? Have they stopped the bleed? Why did they operate on her? That would be the first question. Did she have high intracranial pressures? Did she have high cranial perfusion pressures? Is the brain potentially irreversibly damaged? We don’t know. She’s only four years old.

If she’s having seizures now, are they giving her anti-seizure medications such as Keppra, phenytoin, Vimpat, midazolam or Versed? What are they doing there to keep the seizures under control? Does she have an EVD, an extra ventricular drain? Does she have that in situ, and is the CSF, you’re talking about brain fluids, coming out, is there blood stain, for example? Does it indicate there’s potentially still a fresh bleed? Is she still ICP (Intracranial Pressure) or CPP (Cerebral Perfusion Pressure) monitored, or have they stopped monitoring? Are you just guessing now? Those are the questions.

If she’s still bleeding from the brain and there’s brain swelling, does she need medications such as mannitol, 3% saline, hypertonic saline? Does you need more sedation? There are a lot of grey areas here, Prasan. Look, I do want to slowly wrap this up today.

Maybe we have time for one more question. This is also from Yvonne. This is a follow-on question, it says, “If my grandson is still present, I will have them do everything for him, such as breathing, feeding. Then I’m also worried that we have to do everything for them at home, like suctioning, breathing, feeding.” Yes, that might be the case if you’ve decided on that, that would be the goal of care for your grandson. He’s also still on morphine, you’re saying. So that could be an option. Do a tracheostomy, I think he’s got one already, take him home, and let him have time at home. He could be focusing on quality of end-of-life, he could be focusing on palliative care potentially, depending on how things go and depending on what you would like for your grandson.

Anyway, I do want to slowly wrap this up for today. Also, I want to, once again, thank you for coming onto the call, or if you’re watching the replay, I want to thank you for that as well.

Now, if you have a loved one in intensive care who needs home care, I encourage you to go to intensivecareathome.com. If you have someone in ICU and you’re asking the question, will a tracheostomy and ventilator work in the community? Absolutely yes, contact us on the numbers on the top of our website, or send us an email to [email protected].

If you are at home already, whether you are a patient or a family and you’re realizing what you’re doing is not working, and you think you’re at risk of dying because you don’t have the Intensive Care at Home support, please contact us as well.

Next, if you are an NDIS support coordinator and you’re looking for options for your ventilated or tracheostomy line, and you’re wondering, “Well, the NDIS is saying I can only get support” because no, that’s not accurate. The NDIS says, “You can have critical care nurses because otherwise we wouldn’t be in business.” However, you also need to know how to go about things. You need to know how to advocate for the funding, how the nursing assessment works, then doctor’s assessments work, and so forth. So as an NDIS support coordinator, we highly, highly encourage you to reach out to us, and you can do so on our website. Call us on one of the numbers on the top of our website or send us an email to [email protected].

If you are a critical care nurse and you’re looking for a career change, please have a look at our career section at intensivecareathome.com. We currently have jobs all around Australia, mainly on the East Coast, Brisbane, Sydney, Melbourne, and country Victoria, country, New South Wales, country Queensland, but also in other areas within Australia. I welcome you to contact us again through our intensivecareathome.com website.

Again, if you’re an NDIS support coordinator, we’re also currently expanding our team of NDIS support coordinators, please contact us as well. We want to hear from you, especially if you have experience with ventilation and tracheostomy and you know that a support worker simply won’t cut it, and that you are ethical and you are driven, and you are determined to make this happen for our clients.

If you’re an intensive care specialist, intensive care medical consultant, please contact us as well. We are currently expanding our clinical team, our doctor’s team. We want to hear from you.

Now, also, have a look at our membership for families in intensive care and intensivecareathome.com, at intensivecaresupport.org . There, we have built a membership for families in intensive care, and intensivecareathome.com. You have access to me and my team, 24 hours a day, in this membership, and we answer all of your questions, intensive care and Intensive Care at Home related.

We also review medical records  in real-time. We also provide NDIS nursing assessments. I also offer one-to-one consulting for families in intensive care prior to Intensive Care at Home, if that’s of interest. You can find more information there at intensivecarehotline.com.

Also, if you’re finding my videos valuable, please subscribe to my YouTube channel, click the like button, click the notification bell, share the video with your friends and families, and comment below what you want to see next and what questions and insight you have.

Also, quick shout out, next week, next Sunday, 10:30 AM, Sydney, Melbourne time, 8:30 PM, Eastern Standard Time, on a Saturday night in the U.S. I will have my good friend here, Bill Gasiamis, who is a stroke survivor, in the topic of next week’s YouTube live at the same time, 10:30 AM, Sydney, Melbourne time on a Sunday, Saturday night, 8:30 PM, Eastern Standard Time.

The next week’s topic is, “What are survival chances after stroke?” I will bring a stroke survivor on, Bill Gasiamis, and I’m really looking forward to Bill. Bill is a very good friend of mine, I’ve known Bill for many years. Very strong advocate for stroke survivors and for families in intensive care as well. So, looking forward to that.

Thank you so much for watching.

This is Patrik Hutzel from intensivecareathome.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.