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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,
You can check out last week’s blog by clicking on the link below this video:
In today’s blog post, I want to answer a question from one of our clients and the question today is
My 21-year-old Daughter Died at Home on a Ventilator & Tracheostomy, Was it Preventable? Live Stream!
Welcome to another Intensive Care at Home live stream and thanks for joining in. And today’s topic is, “My 21-year-old daughter was at home on a ventilator with a tracheostomy and she passed away. Was it preventable?” And I’m going to give some case studies today. What happened? Because this is a real situation, this is a real case study. And unfortunately, I have more than one case study about what happened to some clients in the community when they were receiving not enough Intensive Care at Home and unfortunately cost their lives, but I will break it down today with some case studies.
In the meantime, let’s do some housekeeping. So, if you have any questions regarding today’s topic, please type them in the chat pad, I’ll also give you the opportunity to dial into the show and you can ask me questions live here over the phone, or you can just type them in the chat pad. Try to keep them to today’s topic, and if you can’t, if you have other questions about intensive care or Intensive Care at Home, I’ll answer them at the end of today’s presentation.
Now, before we go into today’s topic, also, you might wonder what makes me qualified to talk about this topic today. Again, my name is Patrik Hutzel. I am a critical care nurse by background. I have worked in intensive care/critical care for over 20 years in three different countries. And out of those 20 years, I was a nurse unit manager in intensive care. So, I’ve worked in intensive care at a very senior level, that has certainly given me enough insights to understand intensive care inside out and understand how intensive care units operate besides the clinical. On top of that, I’m also the founder and director of Intensive Care at Home, where we provide a genuine alternative for long term intensive care patients to have quality of life at home. Most of our long-term intensive care clients are ventilated with a tracheostomy, which is also what today’s topic is all about.
I have been lucky to be pioneering Intensive Care at Home over 20 years ago in Germany with a group of amazing ICU nurses where we were pioneering the concept in Germany. And then since 2012, 2013, we were starting to pioneer the same Intensive Care at Home model here in Australia. We have been able to successfully replicate the model to provide an intensive care unit in the home, sending intensive care nurses into the home, 24 hours a day, for long-term intensive care patients and provided genuine alternative to a long-term stay in intensive care, or provide an alternative to end-of-life in the intensive care because a lot of ICUs to this day still think that the best way forward is end-of-life instead of giving people an opportunity to live at home with their families and have the intensive care coming into the home. Okay, so that hopefully sets the scene a little bit.
On top of that, I also provide a consulting and advocacy service, or we provide a consulting and advocacy service at intensivecarehotline.com where we a Intensive Care Hotline (advocate and consult families in intensive care all around the world. So, you can check out) for that.
Let’s get into today’s topic, “My 21-year-old daughter died at home on ventilator and a tracheostomy. Was it preventable?” Great question. One thing that I noticed early on when I started Intensive Care at Home was that we had people come to us and they said, “Oh, I’ve heard of your service. My son, my daughter, my spouse was at home, and they died. They were on a ventilator with a tracheostomy, and we didn’t have intensive care nurses and they died because of medical emergencies.” And unfortunately, that’s not a unique message that I’ve heard. I’ve heard it over and over again and I will give you some case studies where I have firsthand information.
A lot of families came to us and said, “Hey, I’ve heard of your service. It would’ve been great if this service had been here five or 10 years ago because my child, my spouse, my parent, whatever, didn’t survive because they had no support at home or not enough support at home i.e., they had support workers or they had nurses that weren’t ICU trained and so forth.” So, lo and behold, as we were getting the service started and we were proving the concept that Intensive Care at Home is a real thing and not a fancy name as some people still think, “Oh, Intensive Care at Home, that’s just a fancy name.” No, it’s not a fancy name, it is what we do. It is what we’ve been successfully doing now for over 10 years in Sydney, Melbourne, and Brisbane and it’s a real thing.
So, what needs to happen to have Intensive Care at Home? Well, quite clearly, there needs to be the replication of an intensive care unit at home. And that’s what we’ve been doing for the last 10 years. How do we do it? We send intensive care nurses, 24 hours a day, into someone’s home to replicate the ICU bed, continue treatment and therapy at home with the difference that the clients actually have quality of life or a better quality of life. The families have a better quality of life because there is no quality of life in ICUs. So, on top of that, it costs half of the costs of an ICU bed, and it frees up an in-demand ICU bed. That was the case before COVID, now with COVID, I mean ICU beds are in even higher demand and who wants to be in an ICU if they can be at home with ICU nurses? No brainer.
Anyway, so coming back to today’s case study, “My 21-year-old daughter died at home on a ventilator and tracheostomy. Was it preventable?” So, we’ve had a number of clients in 2020 where they were at home with a ventilator and with the tracheostomy. Two clients were at home only with a tracheostomy, not ventilated, but one client was at home ventilated. Now, all of those clients had one thing in common. They had in common that they all needed an intensive care nurse 24 hours a day because that’s what they would be getting in a hospital, why would it be any different at home? Their clinical condition hasn’t changed.
So, when we first took them home, we were only funded for the night shifts i.e., the day shifts were left vacant and were filled either by support workers or by family members. In either case, neither is trained to manage medical emergencies with a tracheostomy or with a ventilator. And again, in a hospital, someone on a ventilator with a tracheostomy would be in intensive care and they would have an intensive care nurse 24 hours a day, why would that be any different at home? Why?
So, cutting the long story short, the families at the time were desperate to get their children at the time, get them out of ICU, get them out of hospital. They were desperate and they were begging us to use the funding that was there to at least fill the night shifts. And again, we made it very clear at the time to the families as well as to the funding body, which was the NDIS (National Disability Insurance Scheme) by the way, that there is a massive risk of patients going home that have intensive care nursing needs and are only staffed overnight. We said that is a risk that could cost someone’s life. We were referring to the mechanical home ventilation guidelines, I should say, to the evidence-based mechanical home ventilation guidelines.
Now, if you look at the evidence-based Mechanical Home Ventilation Guidelines on our website that are research-based out of over 20 years intensive home care nursing in many countries now, you will find that the only evidence that there is, is that the only way a patient with a tracheostomy, ventilation and tracheostomy, also non-invasive ventilation such as BIPAP or CPAP ventilation at home, the only way that’s safe is with an intensive care nurse, 24 hours a day. And those intensive care nurses need to have a minimum of two years ICU experience and that’s basically our minimum quality standard here at Intensive Care at Home. It’s documented, it’s part of our accreditation, it’s third party accredited and verified that this is our minimum qualification requirement.
Now, as a matter of fact, as of 2022, we are employing hundreds of years of ICU experience that we get into the community. As far as I’m aware, there is no other service provider worldwide that has the level of expertise in the community that we have with all the intensive care nurses that we get into the community. It’s a unique skillset, a unique proposal that we bring to the table. It’s also a unique intellectual property that we bring to the table that no other organization really has.
So, cutting the long story short, with all of the advocacy that we did for those clients, besides the 21-year-old person that I’m referring to here, there were two other clients that passed away around the same time. It was a matter of five, six weeks at the time, late 2020 where those clients passed away at home due to medical emergencies that could not be managed either by a support worker, by family members, or by even general nurses because general registered nurses don’t have ICU experience either.
So, whilst I argue, we are looking after the highest acuity clients in the community, the sickest clients in the community, there needs to be minimum qualification standards that we bring to the table in order to manage it safely. The risk is fairly high even for us, but the way to manage it is simply by sending intensive care nurses, 24 hours a day. And if the funding body denies that out of ignorance and also when we talk to the NDIS in particular, there’s non-clinical people making decisions about patients that have intensive care needs. How can non-clinical people make life or death decisions about people that have intensive care needs, that otherwise would be stuck in intensive care? We are providing a solution. How can you provide only half a solution? That is in this situation, the cases that I’m presenting here, the solution that was provided was a deadly solution because it led ultimately to patients and NDIS participants dying and it’s an absolute disgrace.
So, ignoring evidence-based research like, as I mentioned, the mechanical home ventilation guidelines, is simply medical negligence. It’s negligent from the NDIS, ignoring advice from clinicians that have been in the industry for decades and it costs lives of children, and it’s just a disgrace, an absolute disgrace.
Now, bear in mind, during that time, that was late 2020, ICUs were full of COVID patients. And bear in mind that we kept our clients safe at home. And if they had gone back to ICU because of lack of staff, (A), the first question is, would there have been an ICU bed? If there had been an ICU bed, would they have contracted COVID just by being in the ICU? So, we are doing the healthcare system a favor. We’re helping the healthcare system to offload ICU patients instead of occupying an already full ICU, but the funding has to be made available. The appropriate funding has to be made available to keep it safe at home so that patients don’t die.
And getting worse, one of our clients, one of the clients that I’m referring to here, was just a few weeks away from having the tracheostomy removed because the client was scheduled for the second part of a surgery to get a diaphragm pacer and that would’ve ultimately led her to have the tracheostomy removed. So, all that was needed was short-term, 24-hour nursing funding to get this young girl liberated from the tracheostomy and from the ventilator.
It’s tragic beyond words what happened here. And it’s tragic that the NDIS to this day still hasn’t taken any responsibility for those cases and is trying to sweep it under the carpet. Has not with one word said, “Yep, those clients going forward need 24-hour intensive care nursing to keep them safe and get them out of hospital.” So, I appeal to the NDIS here to look at clinical evidence, evidence-based out of over 20 years intensive home care nursing. And it’s clearly documented and researched what needs to happen to keep someone safe at home. And that was escalated at the time to the NDIS Quality and Safety Commission. And again, they’ve been trying to sweep it under the carpet. They’ve not answered our questions about, “What’s the outcome of the investigation? Will you be funding 24-hour intensive care nursing for mechanically ventilated patients going forward?” And they do in some instances. We’ve got clients that have 24-hour intensive care nurses through the NDIS. So, thank you, NDIS that you’ve approved it there for some clients, but the reality is you need to approve it for all mechanically ventilated or tracheostomy clients as is evidence-based.
The next issue is that, with NDIS support coordinators that are supposedly advocating for the NDIS participants, we are finding that some NDIS support coordinators are simply not advocating enough, and they don’t know what they don’t know. What I mean by that is, they take the path of least resistance. They just say to the NDIS, “Oh, we need a funding package for this client.” Not realizing that it’s actually an intensive care patient that needs to go home and that can only be done with intensive care nurses, 24 hours a day. So, they don’t know what they don’t know, they don’t know clinically what the client needs. And again, we can help them with that. And we have worked with some amazing NDIS support coordinators, but most of them don’t really know what to advocate for. They don’t really know the clinical side of things.
I have asked many NDIS support coordinators, “What makes them qualified to make life or death decisions about an NDIS participant on a ventilator with a tracheostomy?” And I get silence because they simply don’t have the clinical know-how and expertise to make those decisions, to put in the right advocacy. Now, again, there are some wonderful NDIS support coordinators out there that work with us closely and they ask us, “What needs to happen in terms of advocacy? What evidence do we need to provide to get to the 24-hour intensive care nursing to get them out of intensive care?” So, we can help them, and we’ve certainly advocated successfully from day one when we started the business because quite frankly, we had to create funding out of thin air and that’s what we did. And now, it’s easier because we’ve proven the concept, but by the same token, it’s an ongoing advocacy process that we all need to go through to get the best outcomes for the NDIS participants and hold the schemes, feet to the fire, making sure they deliver on what they’ve promised on
Apparently, it’s all about choice and control within the NDIS. Well, if it’s about choice and control, then it shouldn’t be a big deal for the NDIS to fund 24-hour nursing care, especially if it’s evidence-based because again, it cost three lives within the span of six weeks, at the end of 2020 in Melbourne or in the Melbourne metropolitan area.
So, what other ways forward? Other ways forward so that we can help our clients better, going forward, is we are also in the process of hiring our own NDIS specialist support coordinator so that we can work closely with them and that they can work closely with our clients to get better outcomes. And I’m putting out an expression of interest here, we are actively looking for an NDIS specialist support coordinator. They don’t necessarily have to be a critical care nurse. They don’t even need to understand critical care, but they need to be able to take direction and they need to be a goal-getter and they need to be able to move mountains or believe they can move mountains. They need to be passionate about our clients and they need to be passionate about what we do as an organization.
And if you are that person, then we would absolutely love to hear from you. You also need to have at least the basic working knowledge of the NDIS. And if you don’t have the basic working knowledge, we certainly would have the expectation that you can get that basic knowledge pretty quickly. So ideally, you are a fast learner, a goal-getter, you can work with KPIs (key performance indicator), you are a strong advocate, you’re not taking no for an answer, you know how to think outside of the box, you know how to get outcomes and results for NDIS participants. And if you are that person, we would absolutely love to hear from you. You can go to our website, intensivecareathome.com, you can find more information on what we do there, or you can just listen to this presentation, or you can send us an email to [email protected]. That is again, [email protected].
So, also, I should say, when we took those clients home, we were well aware of the risk that the night shifts potentially wouldn’t be enough to keep those clients safe and because that was the case, and we knew that we were making a lot of noise then that fell on deaf ears. And also, the clients were rather desperate to not stay in hospitals, especially with COVID running rampant at that stage and still running rampant to this day. But the reality is that the clients were, for lack of a better term, desperate to leave intensive care and leave hospitals so they could get away from COVID. And they were willingly taking the risk that not having someone during the day would put their children’s lives at risk and they did it anyway because of the environment. But that’s not an excuse on an NDIS level not to fund services that are evidence-based and fund services that are absolutely needed. Absolutely needed. We have provided now, hundreds of thousands of hours of intensive care home nursing. So, the concept has been proven way back when.
Okay, so I think that’s about it. And here is another thing that I want to add to this situation. When we first started the business, it was very tough. Nobody wanted to know about us, everyone said, “Oh, this is just crazy. You can’t do Intensive Care at Home. There’s no funding, there’s no this, there’s no that, it’s just not safe.” Yeah, well, as we’ve seen now, it’s not safe if you don’t have the right support structure, but not having an ICU nurse, 24 hours a day, is not Intensive Care at Home, that’s just a washed down service and we don’t provide a washed down service. We provide a one stop solution for long-term intensive care patients. That’s what we do. But all those clients had very long times they stayed in ICU, and they were very traumatized, they were absolutely desperate to go home and that’s why they were willing to take the risk because they thought taking that risk is better than staying in ICU. Unfortunately, they paid for that risk dearly and it’s very sad.
Okay, so I hope that makes sense, what I’ve talked about today and what I should also say is very important for you to know, that when we have a 24-hour nursing roster for our Intensive Care at Home patients funded through the NDIS, those clients often have also a support worker there, 24 hours a day, so it’s not only an intensive care nurse. The support workers are great if they are complimented by an intensive care nurse. I should say the other way around, the intensive care nurse is complimented by a support worker because there’s manual handling and we can’t just ask the intensive care nurse to do all the manual handling and hurt their backs. So, there’s a lot in the NDIS if you know how to advocate and have all the clinical evidence.
Okay, so I think that’s highlighting the issue of clients passing away at home if they are not having intensive care nurses, 24 hours a day, as is evidence-based. Other examples, and yes, let me explain this. So, it would’ve been around 2014 when we were sort of in the very early stages of this service. There was a client in the community with a tracheostomy, a child actually. A child in the community with a tracheostomy and seizures. And the child was looked after by a combination of support workers and general registered nurses. And the child passed away due to a medical emergency once again, that could not be managed by support workers or by general registered nurses. And that was actually at the time, a door opener for that. One of the local hospitals recognized our skill and said, “Hey, we mustn’t repeat a child dying in the community because they don’t get the appropriate skills appropriate to their clinical need. And one hospital then, here in Melbourne, finally opened the door for us because they realized we can’t have kids dying, but it’s not only kids, it’s also adults dying.”
So again, the evidence was mounting, leading up to it. Leading up to these situations. And it’s a tragedy beyond words and it mustn’t repeat itself. And I urge you that if you get this message, if you watch this video that you share the video with, there would be someone out there that has a loved one in intensive care that could go home with Intensive Care at Home. There might be someone you know that has someone at home on a ventilator with a tracheostomy that has a support worker. Please show them this video because it could save a life. It could save a life, it could save an ICU readmission, it could save further damage.
So, I think that’s it for this specific issue.
If you have a loved one in intensive care, with a tracheostomy and with a ventilator, you should reach out to us here at intensivecareathome.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected].
Now, I also want to quickly address our friends and audience in North America, whether you’re in Canada or in the U.S. So, we have many inquiries from Canada and the U.S. and the U.K. and our friends in the U.K. And I will have a special case that I’m going to talk about in the U.K. next week, same time, but I’ll come to that in the end.
So, in the U.S., we have a lot of inquiries where people say to us, “Hey, my loved one is in ICU. They now want to send them to LTAC, can I go home?” Now, I would love to help you send the loved one home. The problem in the U.S. is we haven’t found anyone that can do it. We haven’t found anyone that has set up a specialist service like we have. There is a small provider in New York and there is a small provider in Virginia. We have had some touch points there, it looks like they might be able to help some families, but overall, unfortunately, you have to bite your tongue and you have to contact us because what we can help you with potentially, is we can help you with some staff training. We can help you with some staff training. If you find a provider that’s happy to take it on, we can provide the training for staff for the ICU nurses.
Again, we have the intellectual property to take someone home from ICU to a home care environment. We can advise you on how to do it. But what I do with our friends in the U.S., we reach out to intensivecarehotline.com Where we can help you with consulting and advocacy. We can help you with keeping your loved one in ICU until you’ve found a solution. We’ve got outcomes there for our clients, there’s enough case studies. And our sister side intensivecarehotline.com, how we help families in intensive care all over the world with advocacy and consulting. We’re talking to doctors directly, we’re talking to nurses directly, we’re talking to case managers directly, we’re reviewing medical records. And again, we’ve kept patients in ICU for much longer than the ICU wanted due to our advocacy. Asking the right questions, coming in as a clinician, as a second opinion.
So, that’s what I will have to say to our friends in the United States. Now, before I wrap this up today, are there any questions? Please type your questions into the chat pad. You can also call into the show. If you’re in the U.S. or Canada, you can call now in the show on 415-915-0090. That is again U.S., Canada, you can call in now, 415-915-0090. If you’re in the U.K., you can call 0118-324-3018. That is again U.K., 0118-324-3018. Or if you’re in Australia, you can dial in, 04 1-094-2230. That is again, 04 1094-2230.
Now, again, if you are in a situation where you need help because you’re at home with a ventilator or with a tracheostomy or non-invasive BIPAP ventilator, you should reach out to us at intensivecareathome.com. If you have a loved one in intensive care that wants to go home because they’re long-term ventilated, they’re BIPAP ventilated, they have a tracheostomy or they need home TPN, we also provide home TPN for our client, central line management, we provide IV fluid therapy at home. Also, we have some clients at home that are actually not ventilated, but still need an intensive care nurse, 24 hours a day. They often have seizures, they need seizure management, and if they have seizures, their airway becomes unstable. And that is again, where the skill of an intensive care nurse comes in.
So, go to intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].
And if you have a loved one in intensive care and you need general advice and you need consulting and someone to advocate for your loved one, you can go to intensivecarehotline.com and you can call us on one of the numbers on the top of our website, or you can simply send us an email to [email protected].
Also, check out our membership for families in intensive care at intensivecaresupport.org, where we build a membership for families in intensive care. You can have access to me there via email and via an online platform, and you can get your questions answered there.
We also review medical records for our clients when they have a loved one in the intensive care or after intensive care, that’s part of the service we provide as well. And again, if you have a loved one at home already on a ventilator with a tracheostomy and you’re finding that you’re going back to ICU all the time, you’re finding your loved one’s life at risk, you’re finding that other providers don’t work with intensive care nurses, you’re putting yourself at risk and you need to reach out to us urgently so we can fix the problem for you. You’re putting your loved one’s life at risk without an intensive care nurse, 24 hours a day.
Now, if you like this video, please give it a thumbs up. Subscribe to my YouTube channel for regular updates for families in intensive care. Share the video with your friends and families. Share it with someone that has a loved one in ICU. Share it with someone that has someone at home on a ventilator. And click the notification bell.
Now, next week, next Sunday or Saturday night for our U.S. friends in the U.S., I will talk about Archie Battersbee. Archie is a 12, I should say was a 12-year-old boy in the U.K. that passed away yesterday on Saturday the 6th of August. He was found unconscious at home in the U.K. in April, and he was in ICU. And the courts ruled that it was quote, unquote “in his best interest to die.” And apparently life support was withdrawn yesterday from what I heard from the latest media reports.
I will dissect the case next week and do a live stream about Archie, probably a memory of him, but also to highlight what is going on in the U.K. where they’ve now killed more than one child that was in ICU without respecting patients’ and families’ wishes and basically killing children before they had a good go at treatment and therapy and before they had enough time to go overseas for alternative therapy, which is what I believe the family there wanted. But also, in the past, there were other cases like Alfie Evans in Liverpool in 2016, 2017, and there was also a case Charlie Gard in the U.K. around the same time, 2016, 2017, where the courts in the U.K. ruled that it’s “in the best interest for these children to die.” Rather than having them flown to America or to Italy or to Germany to look for alternative treatments or to get them home with Intensive Care at Home.
It’s disgraceful what’s happening in the U.K., and I believe that the overall situation that those children deserve to have a live stream made about them, (A), in memory of them, but also to change the things that need to be changed so that those children will have a good go at life and that the wishes of the families are being respected.
That’s it for today.
I presume there are no questions today. Maybe you feel overwhelmed after all the information that I shared today. It’s very confrontational information, I get that. But I call a spade a spade when it needs to be. And if there are no questions today, then I’ll wrap it up and we’ll talk again next week.
I want to thank you so much for watching. Thanks for your support.
Share the video with your friends and families, give it a thumbs up, and subscribe to my YouTube channel.
I will talk to you next week.
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.