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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,
INTENSIVE CARE AT HOME NOW IN INDIA! MEET RAJIV MATHUR FROM CRITICAL CARE UNIFIED.
You can check out last week’s blog by clicking on the link below this video:
In today’s blog post, I want to answer a question from one of our clients.
My Daughter is in ICU & They Can’t Help Her Get Weaned Off the Ventilator. What Would You Recommend?
Hello and welcome to another intensivecareathome.com livestream. My name is Patrik Hutzel, I’m the founder and managing director of Intensive Care at Home.
Today’s topic is, “My daughter is in ICU, and they can’t help her getting weaned off the ventilator. What would you recommend?” So, we take a deep dive into today’s question, and before we go into today’s question, want to welcome everyone watching this on replay who didn’t manage to get on the YouTube Live. I want to welcome you. Please be reminded that I do those YouTube Lives usually once a week, usually answer relevant questions from our readers and clients, Intensive Care at Home and sometimes Intensive Care Hotline related as well. I pretty much answer all questions Intensive Care at Home and intensive care related on these YouTube Lives.
I usually do those YouTube Lives 10:30 AM on a Sunday, Sydney, Melbourne time, which is usually 8:30 PM Eastern Standard Time on a Saturday in the U.S., which is 5:30 PM Pacific Time in the U.S. on a Saturday. Times will change in October when daylight saving starts here in Australia, or daylight-saving finishes in the U.S.
Anyway, before we get on to today’s topic, just very quickly, what makes me qualified to talk about these topics that I bring up here? (A), number one, we are getting so many questions from readers and clients that we want to share as much information and as much knowledge, publicly, so everyone can benefit from that. (B), I am a critical care nurse by background. I have worked in critical care/intensive care for over 20 years in three different countries. I also have worked with Intensive Care at Home services for over 10 years. I was part of pioneering Intensive Care at Home in Germany about 25 years ago, and I also successfully set it up in Australia in the last 10 years.
So, I have experience with dozens of Intensive Care at Home clients. I haven’t counted them, but I do believe that I have unique expertise and insights by having taken so many clients home from ICU, directly set up Intensive Care at Home for clients with ventilation, tracheostomy, high flow nasal oxygen at home, BIPAP (bilevel positive airway pressure), CPAP (continuous positive airway pressure) ventilation, home TPN (total parenteral nutrition), home IV potassium, home IV antibiotics, central line, PICC (Peripherally Inserted Central Catheter) line management at home. It is a very, very unique skill that we are bringing to the table at Intensive Care at Home. We are employing hundreds of years’ critical care nursing experience combined with Intensive Care at Home.
As far as I’m aware, we are the only service in Australia that brings that level of skill into the community. There’s no other service as far as I’m aware, we are the only service in Australia that actually has third party accreditation for Intensive Care at Home. Again, there’s no other service that has this level of skill. Also, have a look who else is making content about ventilation, tracheostomy at home, BIPAP, CPAP ventilation at home. There’s no one even putting content out there because it’s such a specialized skill that you can only really talk about that skill if you’re actually doing it.
So, as part of my journey, we worked with, as I said, hundreds of families, taking them home. We’re running it on a day-by-day basis, seven days a week, 365 days of the year, keeping patients out of intensive care by making sure they’re living a good quality of life at home.
So, if you have any questions, please type them into the chat pad and I will get to them. Please let me know what you’re curious about, what you want to know.
But without further ado, let’s go to today’s question, “My daughter is in ICU, and they can’t help her getting weaned off the ventilator. What would you recommend?” That is a question that came in from Rochelle earlier in the week, and let’s dive that right into. So, if you look back at my YouTube Lives from the last few weeks, I would’ve made YouTube Lives about, “Can you live a long life with a tracheostomy?”, “What is the purpose of a tracheostomy?, “Can you live with a tracheostomy in the community?”, “Can you live with a tracheostomy and a ventilator in the community?” I would’ve done a whole heaps of videos around the topic of tracheostomy, the purpose of it, when to have it in the community. If you have one in the community, what services do you need? How is it safe? So, I’ve made videos all about that in the last few weeks, so you can go back through my YouTube Live category, and you will find a ton of information there.
So, when someone, in this instance it’s your daughter, Rochelle, is in ICU, can’t be weaned off the ventilator. It’s an extremely frustrating situation and it sounds to me like she might have a real chance of getting off the ventilator. You haven’t specified why your daughter is in ICU, you haven’t specified what is her diagnosis? What’s her condition? What have they tried, what have they not tried? Is your daughter awake? Is she unconscious? What’s really happened in order to get her to this situation in the first place?
Now, my advice is, in a nutshell, that if your daughter has a chance of getting off the ventilator while she’s in ICU, and if she has a chance to get off that ventilator in a reasonably short period of time, keep her there, get her off the ventilator, and then get onto rehabilitation. Take her home without a ventilator, without a tracheostomy, because then going home is so much easier.
Now, let’s assume your daughter cannot be weaned off the ventilator, for whatever reason, and has a tracheostomy, of course, and there’s no light at the end of the tunnel. Either it takes weeks, months, or, God forbid, your daughter has conditions such as a high spinal injury and she potentially needs the ventilator for the rest of her life. Then, absolutely, she will need to go home because that is best practice. It’s also evidence-based practice.
When you look on our website at intensivecareathome.com, there’s a section on our website where it says Mechanical Home Ventilation Guidelines. Now, those guidelines are, number one, evidence-based. Number two, clearly, the guidelines, are a result of over 25 years of Intensive Care at Home nursing in Germany, as well as over 10 years of Intensive Care at Home nursing in Australia. So, clearly, those guidelines work, and the guidelines clearly say that, in order to take a patient home on ventilation tracheostomy, and it doesn’t matter whether it’s non-invasive ventilation such as BIPAP, CPAP, or invasive ventilation with tracheostomy, or even tracheostomy as such, it needs a critical care nurse, 24 hours a day, with a minimum of two years critical care nursing experience. Period.
So, again, we’re talking about evidence-based healthcare here, and anybody else who says to you it can be done with support workers, registered nurses without ICU experience, is basically signing off on a death sentence. The reason I’m saying that is, we have looked after clients on ventilation tracheostomy at home that were only funded for night shifts, and during the day, they were left with support workers, family members, or even general registered nurses without critical care nursing experience. None of them competent to look after tracheostomies and mechanical ventilation. Three participants, at least, passed away during the day, at home, when no critical care nurse was present.
So, those Mechanical Home Ventilation Guidelines on our website at intensivecareathome.com have a clear purpose, and once again, it’s evidence-based. This has been done now for over 25 years, and enough research has been done to understand what makes Intensive Care at Home nursing safe. It is all about safety.
It’s about safety, but it’s also about quality of life, of course, because Rochelle, it sounds to me like your daughter has no quality of life in ICU. This is when most families reach out to us saying, “Look, we’ve got a big, big problem here. Can you help us take the next steps? The hospital is very risk averse.” Of course, hospitals are very risk averse, and they want to make sure that things are being done safely and so do we. We would never take a patient home when we think it’s not safe.
Our goal is to keep your loved one home predictably. It needs to be a win-win situation. Our goal is for the hospitals to keep their patients out of ICU predictably. No, it can’t be hit-and-miss, that’s not what we are here to do. We are here to provide a reliable, quality service. Once again, Rochelle, I do believe you need to check in with the intensive care team, whether your daughter has a realistic chance to get off the ventilator in the next few weeks, couple of weeks, get the tracheostomy removed, and then go onto rehabilitation, and then go home. That would be the easier path, no question. That would be the best path for your daughter. However, if for whatever reason she can’t be weaned off the ventilator, we are here to set up Intensive Care at Home for you.
So, how does it all work? Well, it works that, obviously, someone needs to refer the patient to us, and that can be you, it can be the hospitals of course. Hospitals have a short supply of ICU beds, ICU staff, so it’s a win-win situation. You want your daughter at home, you want to be at home, because you are probably living in ICU at the moment, that’s certainly not a good position to be in. The hospital desperately needs an ICU bed, needs to free up ICU staff.
The cost of an ICU bed is around $5,000 to $6,000 per bed day. Challenges from a hospital perspective are of course issues such as not having enough acute care beds for accidents, for surgery, for anything that comes in from the streets, so to speak. Surgery gets cancelled because there’s no ICU beds. So, it makes perfect sense to focus on a solution that provides a win-win situation for everyone. This is exactly what Intensive Care at Home is, it’s a win-win situation for everyone.
Also, next steps are to get your daughter, if you are in Australia, I assume you are in Australia, on an NDIS plan, because most of our clients nowadays are funded through the NDIS in Australia (National Disability Insurance Scheme). Some of you watching this, if you have a family member in intensive care, you might think, “Oh, what does the NDIS have to do with intensive care patients?” Well, a lot. Let me tell you this, a lot.
So, as I said, most of our clients are funded through the NDIS and their journey often, unfortunately, starts in intensive care. But that is a pathway forward for anyone that’s below the age of 65. If you don’t know how to go about it, please contact us, because we can help with NDIS support coordination, as well as NDIS specialist support coordination. We employ our own, but you might also have a good NDIS support coordinator in your network. But if you don’t know how to even get on the NDIS, please contact us and we can help you with that.
Other funding bodies, that we engage with and that support what we do, are the TAC in Victoria, the Transport and Accident Commission in Victoria, iCare in New South Wales, NIISQ in Queensland, as well as the DVA (Department of Veteran Affairs). If you have a family member that is above the age of 65, it should go to the Department of Health. You definitely want to contact us if your loved one has private health insurance, we want to talk to your private health fund to fund Intensive Care at Home. Sometimes, public hospitals even pay for it, because again, hospitals have an interest in freeing up their beds and saving money.
So, once that’s out of the way, we look at getting all the right equipment for you. Again, we’ve set up Intensive Care at Home many, many times. Sometimes your house might need a little bit of refurbishments, depending on what your house looks like. But again, this is, in most cases, all funded through a funding body. Still much more cost-effective compared to a stay in intensive care. So, sometimes your bathroom might need remodeling, or patients might need a ceiling hoist and so forth. Then other equipment, such as ventilators, spare tracheostomy tube, suction machines, hospital bed, wheelchairs, that all need to be organized, and I know that now sounds very overwhelming, but there is a process to go through. Again, with the right team, this can all be done.
The NDIS is funding not only the nursing care, also funding the equipment side of things. There’s definitely a path forward, and we’ve walked that path many, many times with our clients and their families, every single time. So, we are very, very experienced, making that transition possible.
Next, team. Let me talk about team here. Obviously, if you are going home from intensive care, you want to have the right team around you. How do we do that? Well, we are trying to select staff that are the right fit for you and for your family. Having the right staff match with the right client, or having the right client match with the right staff, is incredibly important.
We understand it’s not like an intensive care unit in a hospital, where people come and go, we know that’s not what our clients want. We know that. That’s one of their frustrations in ICU, that they work, have a nurse look after their family member, they really like the nurse, and then that nurse is never to be seen again for whatever reason. Then next thing, they have someone else looking after your family member, and then they see this person every day, but it’s not the right match, whatever the case may be. It is all coming down to having the right match for the right client, and we are well aware of that. Sometimes it also comes down to staff location, of course, but even staff location should not deter you if you think, “Oh, I’m not in a metro area.” Contact us, we have provided, or we are providing staff in remote areas, and that’s all possible as well.
Again, the NDIS is often funding remote area rates depending on the location, so that we can incentivize staff to go to those remote areas. Again, bear in mind, if you’re stuck in a metropolitan hospital, or metropolitan ICU, and you want to go home, but you are remote, again, can all be done. You could talk to some of our remote clients if you wanted to, how we set it all up, and go from there.
So then, once the staff are selected, in certain cases we also have a team leader, that depends a little bit on funding, whether the funding body allows for funding for a team leader, but we certainly know from experience that a team leader absolutely helps to make a smooth transition from ICU or from hospital to home, because the team needs to be coordinated, of course. The team needs to know that there’s a central person they can talk to when issues come up during the transition, going home, until everything is set up properly.
This takes a little bit of time, but we are very experienced in making that transition from hospital or from ICU to the home, so that we can walk you through it and help you through it as well, like we’ve done with all our other clients. So, that is what I would recommend, Rochelle. I know it sounds overly simplistic, but that is the way forward here.
Another option for your daughter could be, she might be able to be weaned off the ventilator, but she might need the tracheostomy in the long run. As I said, I don’t know, you haven’t shared the ins and outs, but one way or another, even if your daughter doesn’t need ventilation but needs a tracheostomy for a longer period of time, that she still will need 24-hour critical care nurses at home, because everything else is not safe. As I said, patients have died and we have the evidence to back up what we are saying here. So, Rochelle, I hope that does answer your question. Contact us as a next step so that we can walk you through it, especially around the funding side of things, but then obviously also setting it up.
If you are an intensive care medical director or intensive care specialist and you’re watching this and you can resonate with a similar situation, I encourage you to contact us as well. If you are an ICU nurse manager and you are faced with a similar situation, please contact us, we can help you help your patients to live a better quality of life. We can help you free up your ICU beds and you don’t even pay for it. If you’re a hospital executive watching this, and you know where your bed blocks are, I encourage you to contact us as well.
If you’re an NDIS support coordinator and you have a participant potentially requiring our service, but you don’t know where the funding is coming from the NDIS when it comes to nursing care, 24-hour nursing care in particular, please contact us as well, we would love to talk to you about this specific issue. If you are looking for an NDIS support coordinator, I would also welcome you to talk to us, so that we can point you in the right direction.
Now, let’s also answer a few more questions that came in during the week. Obviously, if you have any questions regarding today’s topic, please leave them in the chat pad. Let’s just quickly look at the questions that came in during the week.
Question coming in from Annette. Annette says, “Hi, Patrik. My mother has had open heart surgery. She also had surgery to remove several clots the following day. The day after that, repair an artery. My mom has never had any kind of surgeries, no illnesses before, ever, she’s healthy. She’s exercising and eating right, so it was a big surprise. So, the surgery was 12 days ago and she’s non-responsive and has been removed from sedative drugs. I’m very concerned she hasn’t woken up. She’s 75, and I mean a healthy 75. Is this normal?” Great question, Annette. I’m sorry to hear about your mother’s situation after open heart surgery.
Look, I have seen these situations many times when I worked in ICU. So, when you say they removed several clots the following day, she probably had a tamponade. What that means is, blood from the surgery accumulates around the heart and puts the heart at risk of stopping, going into cardiac arrest. So, they probably removed the tamponade, they had to put her back into an induced coma.
So, what often happens is, or what normally happens is, when patients after the induced coma and open-heart surgery, they should come out of the induced coma within less than 24 hours. If they’re hemodynamically stable, they move onto a hospital ward or a hospital floor, it’s pretty straightforward.
But, especially after open-heart surgery, one of the risks is cardiac tamponade, which is probably what’s happened here. So, they had to take her back to theatre, to the operating room, remove the tamponade, put her back in ICU, probably kept her ventilated for a little bit longer, because she was probably also hemodynamically unstable. She might have needed blood transfusions, she might have needed inotropes or vasopressors. Then, waking up can be delayed.
Now also, you’re mentioning she had several clots. Now, I also hope she didn’t have a stroke. So, go and find out whether she had a stroke, whether they’ve ruled out a stroke. If she did have a stroke, God forbid, there could be delays in waking up and there may be some neurological damage. At the moment, I think your biggest challenge is that you don’t know what you don’t know. You don’t know what to look for. You don’t know what questions to ask. You don’t know your rights, and you don’t know how to manage doctors and nurses in intensive care. I think that’s exactly what you’re dealing with at the moment, that you haven’t asked the right questions yet.
That’s also something we help with here at Intensive Care at Home and Intensive Care Hotline. I would love to get you on the phone, and I would love to talk to the doctors and nurses directly, because I think that is exactly what’s needed here. To find out what’s exactly happened, has a neurologist been consulted? Has she had a CT scan of the brain and MRI scan of the brain? Those are the questions that I would want to have answered in a situation like that.
So, not waking up after more or less double surgery within a couple of days, is not uncommon. It’s not uncommon. It’s 12 days ago now, however, I would say that you absolutely need to seek a neurological consult, CT scan of the brain, MRI scan of the brain, EEGs need to be done and see what the neurologist says. I fear that there may have been a stroke when you’re talking about blood clots as well. How have they treated it? Have they mentioned anything about a stroke at all? It sounds to me like they may not have. It sounds like they may have kept you in the dark so far. I hope that helps, Annette.
Let’s get on to another question. This is a question from Tom. Tom says, “I had bowel cancer back in 2015. I had an operation in September 2015 to remove the cancer from the rectum. I was very lucky, no follow-up treatment, etc., built up my strength. For 10 months, I had the reversal of surgery in July 2016. I developed a bowel leak within three days of the surgery and ended up in ICU. I had serious complications from this event, and I was put into an induced coma for three to four weeks. My question to you is, was this too long, as I ended up being like a baby again. When I woke up, I couldn’t walk, I couldn’t talk or anything. It was horrendous for me and my family. Plus, for seven years now, I’ve had short-term memory loss, repeating myself, and I’m still having bad nightmares and dreams. Is this normal?”
Tom, I’m incredibly disturbed by what you’ve been through. I’m incredibly sorry on what you’ve been through. I don’t quite understand why you would’ve been in an induced coma for three to four weeks. That means you would’ve been on a ventilator. Especially, you’re talking about three to four weeks, so I would’ve thought that after maybe two weeks, they would’ve given you a tracheostomy and then taking you out of the induced coma. So, they may not have followed the right evidence-based guidelines.
They may not have followed evidence-based practice here, because most of the time, the purpose of a tracheostomy is to get someone out of any induced coma as quickly as possible to let them wake up, exercise, breathe, and speed up the process of getting them off the ventilator because if you keep in the breathing tube, that means you have to keep them sedated, even though there are different schools of thoughts now as well, whether you have to keep someone sedated while they are on a breathing tube.
If you look up a podcast that I’ve done a few months ago with Kali Dayton, she worked in an ICU where they never sedated patients on a breathing tube, and they had very good results in terms of weaning patients off the ventilator, because they weren’t sedated. So, Tom, you have to find out, or we can help you finding out by looking at medical records, what exactly happened, because a lot of it comes down what exactly happened.
So, if someone has been in an induced coma for three to four weeks, is it normal that they have to start from scratch again, like walking, talking, eating, drinking. You mentioned you had memory loss and whatnot. Well, I’ve made countless videos over the years where I say, you have to minimize the time spent in an induced coma. If you can’t minimize the time spent in an induced coma, you need to continue doing physical therapy, movement therapy, move the body, move the joints, move the legs, move the arms, so that people, when they do eventually come out of an induced coma, don’t start from scratch, which is unfortunately, probably, what’s happened here, Tom, that you had to start, like you said, like a baby, learning everything from zero.
This is why it is so important that you have an advocate, while you are in intensive care, who can help you, guide you through the process, because your family probably didn’t know that, instead of staying in an induced coma for four weeks, another alternative would’ve been a tracheostomy after two weeks.
Now, there are exceptions to that rule, and there might’ve been a contraindication that I’m not aware of. Maybe your PEEP was too high, maybe you were on heparin, I don’t know. There are sometimes contraindications why a tracheostomy can’t be done, but once again, it all comes down to having an advocate, while you are in intensive care, who can walk you through the process, who can talk to doctors and nurses directly, who can ask all the questions you haven’t even considered asking. Now, you need to start these things from zero, I’m afraid. I can only imagine what nightmares you are going through.
“I also want to know if this is classed as medical negligence.” Well, I’m not a lawyer, Tom. However, what I will say is this, that if the ICU didn’t do a tracheostomy and they could have done one, and you stayed in an induced coma for longer and you didn’t get physical therapy, you didn’t get the buildup that you needed to get better while you were in an induced coma, then I would say it might be medical negligence.
You are saying, “As I tried to sue the hospital for this foul operation.” Look, again, we can help you find out whether it was medical negligence or not by looking at the medical records. That’s rather simple. We can look at that pretty, pretty quickly and find out whether there has been medical negligence or not. We can have our legal nurse ICU consultant look at it. So, I hope that helps. Don’t give up, Tom. You’re doing a great job in getting through this, and getting answers, and getting back to “normal.”
So, I want to wrap this up here today. Bit shorter than usual, but I do want to wrap it up today here.
Now, if you have a loved one in intensive care and you want to go home with Intensive Care at Home, I encourage you to contact us, especially if your loved one has a ventilator and a tracheostomy, or a ventilator without a tracheostomy, or a tracheostomy without a ventilator. That’s us. We do that. It’s bread and butter for us. Also, we do home TPN, home IV antibiotics, home IV fluids, home IV potassium infusions, magnesium infusions. We do all of that.
Our clients are NDIS funded. We are now also employing an NDIS support coordinator that can help you with the funding side of things. But even if you are an NDIS support coordinator and you have a participant that needs Intensive Care at Home, but you don’t know how to go about the funding, I urge you to contact us as well, we can help you and walk you through the process as well. We’ve been involved in many successful advocacies for our clients that always led to 24-hour nursing care, even with the NDIS, but also with other funding bodies.
If you are an ICU doctor, ICU nurse manager, and you know your patients that need Intensive Care at Home and you have a bed block, please contact us as well. If you’re a hospital executive and you have a need to eliminate your bed blocks and partner with your consumers so that they can enjoy a much better quality of life, please contact us as well. If you are an ICU nurse, or critical care nurse looking for a career change, please contact us as well. We have CCRN jobs in Melbourne, Sydney, and Brisbane at the moment. If you’re an ICU specialist and you want to join our medical team, please contact us as well, we are currently expanding our medical team as well.
We also have a membership for families in intensive care at intensivecaresupport.org. There, you have access to me and my team, 24 hours a day, and we answer all questions, Intensive Care at Home and intensive care related. We also offer NDIS nursing assessments, as well as medical record reviews including medical record reviews in real time. So, we do all of that.
Now, if you are liking my videos, please subscribe to my YouTube channel, click the like button, share the video far and wide with your friends and families, and comment below what questions and insights you have from this video.
Thank you so much for watching.
This is Patrik Hutzel from intensivecareathome.com and intensivecarehotline.com, and I will talk to you in a few days.
Take care for now.
Now, if you have a loved one in intensive care and you want to go home with our service intensive care at home and if you want to find out how to get funding for our service and how it all works, please contact us on one of the numbers on the top of our website, or send me an email to [email protected]. That’s Patrik, just with a K at the end.
Please also have a look at our case studies because there we highlight more about what we can do for clients, how clients can live at home with ventilation and tracheostomies and you can look at our case studies as well at our service section.
Intensive care at home Case studies
And if you are at home already and you need support for your critically ill loved one at home, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of that.
And if you are an intensive care nurse or a pediatric intensive care nurse with a minimum of two years, ICU or pediatric ICU experience, and you ideally have a critical care certificate, please contact us as well. Check out our career section on our website. We are currently hiring ICU and pediatric ICU nurses for clients in the Melbourne metropolitan area, Northern suburbs, Sunbury, Bendigo, Mornington Peninsula, Bittern, Patterson Lakes, Frankston area, South Gippsland, Drouin, Warragul, Trida, Trafalgar and Moe as well as Wollongong in New South Wales.
www.intensivecareathome.com/careers
So we are also an NDIS, TAC (Victoria) and DVA (Department of Veteran Affairs) approved community service provider in Australia. Also have a look at our range of full service provisions.
Thank you for watching this video and thank you for tuning into this week’s blog.
This is Patrik from Intensive Care at Home, and I’ll see you again next week in another update.