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
Dad’s Been in ICU 4 Months, Ventilated with Tracheostomy, I Want Him Home with Intensive Care at Home
Wherever you are, thank you so much for coming on to another YouTube live stream from Intensive Care at Home and Intensive Care Hotline. I want to welcome you and we’ll just wait a minute until the people have arrived. Before we dive into today’s session, which is, “My dad has been in ICU for four months or 120 days ventilated with tracheostomy. I want him home with Intensive Care at Home.” Today, I want to illustrate of what keeps this gentleman in ICU to this point, which is mainly a mindset. It’s not based on reality. It’s mainly based on a mindset. But I will break all of that down today in terms of mindset shift, practical steps to take to get this gentleman home from ICU after nearly four months.
But I would break all of that down. I will talk about the gentleman’s medical history and the steps that need to be taken to enable this gentleman and his family to have quality of life at home, rather than being stuck in intensive care unnecessarily. Unnecessarily taking up an ICU bed that costs nowadays $6,000 per bed a day is the most highly sought-after bed in a hospital where you also have the highly sought-after staff needed in a hospital, ICU doctors, ICU nurses. Very rare staff to find these days.
Very hard to train these staff, very hard to get the experience because it’s a very tough environment. You got to keep those beds empty at all costs and take patients home instead and make it a win-win situation for everyone.
So, I would break all of that down. We’ll just give it another minute for the people to arrive. It’s 10:30 here in Melbourne, Australia on a Sunday morning. It is just after 6:30 Eastern Standard Time on a Saturday on the East coast in the U.S. And it’s just after 3:30 PM Pacific Rime on the West Coast of the United States because I know we’ll have us here from all over the world and it’s just after 11:30 PM on a Saturday night in the U.K.
So, without further ado, let’s get started. So again, today’s headline or today’s subject or today’s title is, “My dad has been in ICU for four months or 120 days ventilated with a tracheostomy after many complications. I want him home with “Intensive Care at Home.” And this is, again, I’m only talking about real things here. I never make up things that this comes from my personal experience and experience with, I don’t know, hundreds or even thousands of families in intensive care that I work with in over two decades. So that brings me to what makes me qualified, talking about today’s topic.
So, I’m an intensive care nurse by background. I have worked in intensive care for over 20 years in three different countries. Out of those over 20 years in ICU I have worked for over five years as a nurse unit manager in intensive care. As a matter of fact, I have managed two separate ICUs and I have consulted and advocated for families in intensive care since 2013 as part of my intensivecarehotline.com. And I’m talking to families in intensive care all over the world every day.
I’m also the founder and managing director of Intensive Care at Home where we look after predominantly long-term ventilated patients at home as a genuine alternative to intensive care or to a long-term stay in intensive care by enabling people or patients in ICU adults and children to have quality of life at home. In some instances, it’s called end-of-life at home and free up, again, the most sought-after ICU bed or the most sought-after hospital bed there ever is, which is the ICU bed.
It’s also the most expensive bed in a hospital. Again, we’re talking about $6,000 per bed day. That’s U.S. dollars or Australian dollars you can calculate. What’s that in British Pound? I don’t know, probably something like 4,000, four and a half thousand British pound per bed day. And by taking people home from intensive care and provide Intensive Care at Home is slashing the cost of the ICU bed by 50%. And you’re freeing up the ICU bed, which is again, the most sought after and in demand bed in a hospital. It’s a win-win situation all around.
Okay. So, let’s quickly talk about some housekeeping issues before we dive right into it. If you have any questions that are on today’s topic, please type them into the chat pad. If you have questions that are not related to today’s topic, but still intensive care or Intensive Care at Home related, please type them into the chat pad and I will get to them at the end of today’s topic. I will also give you the option to dial into the show live and answer your questions live on the show.
I will do that after we’ve gone through today’s topic. So, a few weeks ago I was talking to an intensivecarehotline.com client who has their 63-year-old dad in ICU for 120 days. Initially he had cardiac surgery, open heart surgery, bypass grafts times five in June this year 2022 which was followed by complications. Initially he was unable to be weaned off the ventilator. He had a few failed extubations. He had multiple arrhythmias, cardiac arrhythmias following the surgery. He had few categories that were managed well that helped him to survive, but obviously a combination of cardiac arrhythmias and categories post cardiac surgery, it’s not a good combination to start with.
And then he had a couple of failed extubations. He aspirated and then ended up with a tracheostomy. And even then, he got decannulated at some point. He was weaned off the ventilator, but then again, aspirated again. Tracheostomy was put back in again and ended up back on the ventilator with tracheostomy. So now, we are here roughly 120 days later, still hasn’t left ICU.
Again, this gentleman is only 63 years of age. He lost a lot of weight in the ICU. Now the intensive care team is telling the family he has lung fibrosis. He has been diabetic for the last 15 to 20 years. He’s immunosuppressed and he’s on oxycodone. He’s on clonidine overnight to help him sleep. His ejection fraction of the heart is around 40% and he’s now got apparently lung fibrosis, which makes it very hard for him to be weaned off the ventilator even though he’s currently on some pressure support trials during the day.
But obviously his pressure support is very high because of the lung fibrosis and that will make it very difficult for him to be weaned off the ventilator. He has had some speaking valve trials here and there, but the time he can stay off the ventilator is not long enough, and he has numerous setbacks with infections. And then he goes back on antibiotics. He’s white cell count is high. He’s got a temperature.
That is one of the reasons why he should go home because ICU is just such a high infection risk because there’s just so many sick patients in ICU that the risk of doctors, nurses going to another patient then transmitting an infection to another patient is just very high and it’s a reality.
Now, the ICU team wants to push for palliative care because they’re saying, “Well, this gentleman will never come off the ventilator and that may well be accurate.” That should not stop from enabling the ICU to send the patient home with Intensive Care at Home and let him have quality of life or quality of end-of-life at home. It’s an absolute no-brainer. And this gentleman is begging for it. He keeps telling the family he wants to go home. His brain is intact. His brain is working. He can actually write. His wish is down and the intensive care team so far is conveniently ignoring it.
They’re even telling him that he won’t have any quality of life. Well, we certainly know with Intensive Care at Home that all of our clients report a very good quality of life at home instead of being in intensive care. I know that taxpayers are very happy by having Intensive Care at Home as an option because it saves the taxpayer. Doesn’t matter which country we are in, it saves the taxpayer 50% of the cost of an intensive care bed.
It’s a win-win situation all around. It helps the intensive care team to empty a bed, and give patients choice and options rather than withdrawing treatment prematurely and unnecessarily and inappropriately and not give patients the quality of life they want and they deserve. As a matter of fact, this particular ICU is conveniently, again, ignoring the patient’s wishes, which he has clearly written down on a piece of paper and trying to go behind his back and basically “make him” NFR (Not for Resuscitation) or DNR and do not want to resuscitate him in case he has another cardiac arrest or heart attack.
Again, patient clearly wants to live, even if it’s on a ventilator. He wants to go home. He’s got five children. He’s got grandchildren. He’s got every reason to live, and he wants to exercise that right to live. And at his young age of 63, here in Australia, the NDIS (National Disability Insurance Scheme) will fund for Intensive Care at Home with the right advocacy. Why is that? Because someone can’t come off a ventilator, well, they need 24-hours intensive care, intensive home care nursing according to the Mechanical Home Ventilation Guidelines, which I will link to after we published this video here.
You can read the mechanical home ventilation guidelines. They are evidence-based, and this evidence clearly demands, not even suggests clearly demands that only intensive care nurses with a minimum of two years ICU experience can look safely after ventilated patients at home with the tracheostomy. And this is exactly where this man finds himself in, where this family finds themselves in. It’s time for the ICU to release this man and let him go home with the right support structure with the right funding under his belt and make things happen.
There’s no need for him to stay in ICU. His PO2 (partial pressure of oxygen) is low, but again, that can all be managed at home. There are oxygen concentrators available and his PCO2 (partial pressure of carbon dioxide) is a little bit high as well still. But again, then his ventilator settings need to be adjusted. Clearly if CO2 (carbon dioxide) is a little bit elevated, the gentleman’s Glasgow Coma Scale is still a 15, which enables him to make his own decisions and enables him to make his own call about his quality of life, not for anybody else to determine or to suggest what that should look like.
It’s his quality of life. Not my quality of life, not the ICU team’s quality of life, it’s his quality of life, it’s the family’s quality of life, not anybody else’s quality of life. We don’t need any judgement here. We need solutions. And ICUs are very quick in making judgments instead of seeking solutions. Well, here at Intensive Care at Home, we’re all about seeking solutions for our clients. And that’s why we can help this gentleman in going home.
Everything else can be managed at home whether it’s Clonidine at home, whether it’s pain management at home, whether it’s mobilization at home, whether it’s steroid treatment that he’s still having for the lung fibrosis, that can all be managed at home. Nowadays in 2022, hurray, you can also do chest x-rays at home. We are doing this all the time. We’re doing just x-rays at home with another organization that we partner with. The development in the communities rapidly evolving where other services can see what we are doing, and they tie in with what we are doing.
It makes perfect sense. And rather than the ICU now involving palliative care and basically trying to push for withdrawal of treatment, ICU should be pushing for Intensive Care at Home because if they want to have palliative care involved and if they want to, “palliate this patient by starting midazolam, starting morphine infusions with a patient that is compos mentis that is fully oriented and has expressed his wishes”, that in my mind is euthanasia. It’s potentially murder. And I stand by this.
In this situation, family needs to keep asking for Intensive Care at Home and needs to keep pushing for that, for what the patient wants. But here is another lesson that needs to be learned out of this. We strongly recommend that whether it’s for yourself or a family member, that you have an advanced care plan in place before anything like this happens. Because if it was clearly documented what your loved one wants, the ICU has no leg to stand on because it’s all about choice and control for a patient or for a family.
And again, we have evidence here that the ICU has issued a DNR without the patient’s consent. Patient is vehemently refusing a DNR. He wants to be resuscitated and that’s well within his right. So, what are the next steps? Next steps really are that after 120 days in ICU, it’s probably now even a bit more because the first contact that I had with the family was about two or three weeks ago.
The next step really is to go home and set it all up, get funding, get a team of intensive care nurses together that can look after this gentleman at home and improve his quality of life. We need to set up the equipment. We need to hire staff and set it all up. There is absolutely no reason why this gentleman can’t go home. There’s no clinical indication why he can’t go home. There’s only a mindset shift needed to make it happen.
For example, still in this day and age in 2022, many ICUs still think that the only avenue for patients in ICU is either go to a hospital board or go to a hospital floor and survive ICU or that they die. That is a very, very limited mindset. A very limited mindset. Well, there is another option, especially for long-term ventilated adults and children with tracheostomy. The other option is Intensive Care at Home, and that is a viable option. We’ve provided hundreds of thousands of hours of intensive care home nursing and kept patients out of ICU.
Again, creating a win-win situation for all stakeholders, providing quality of life in some instances, quality of end of life at home for patients and their families at home. Cutting the cost of an ICU bed by roughly 50% and by freeing up the most sought-after bed in the hospital, which is the ICU bed, right? No-brainer. Win-win situation for everyone.
In case you’re wondering, why am I not going into more detail about the clinical issues at hand, some ICU staff might tell you, “Oh, you can’t do this. You can’t do that at home.” Well, I’ve spoken to the family, and I know what’s happening there and there’s nothing we haven’t done before. Nothing we can’t do at home. It’s all a myth to say that these things can’t be done at home just because most ICUs still operate from that limited mindset that a patient in ICU can only go to a hospital ward, hospital floor or die. Those are the only two options.
There are other options. Again, Intensive Care at Home is that option. So, irrespective of what it is, whether it’s oxygen delivering, whether it’s chest X-rays at home, whether it’s management of steroids, whether it’s management of changing ventilator settings, it’s so much easier to be managed at home, whether it’s pain management. We can do all of that at home. We’ve proven this now for nearly 10 years. And again, we didn’t even reinvent the wheel. Intensive Care at Home services have been available in Germany, Austria, and Switzerland since the late 1990s. And it’s a well-accepted concept there and it’s a well-accepted concept here now in Australia as well.
So, it’s time that ICUs make the shift full stop, especially with the ICUs struggling for beds anyway. Even things like diabetes can be managed at home with insulin. Again, that is the skill of our nursing staff. We can monitor this gentleman at home if he, God forbid, goes back into AF (atrial fibrillation) I’m sure we can manage that at home by replacing potassium, replacing magnesium, doing a 12-lead ECG, getting telehealth consult, which is what we’re doing now over and over as well, over and over again as well.
We’re doing more and more telehealth consults at home mainly with emergency consultants, right? But they’re really good. They do understand what it takes to take a patient home and there’s a lot of synergy having intensive care nurses at home with emergency consultants on the other end. There’s so much synergy there and they can order chest x-rays at home. They can order up bloods. They can order IV antibiotics. It just makes a lot of sense to do that. Right?
So then obviously services need to be provided around the mechanical home ventilation guidelines. And with the mechanical home ventilation guidelines, now, you will see… Now again, I will post then underneath this video once the video is live. And you can also find the mechanical ventilation guidelines on our website at intensivecareathome.com.
When you look at the mechanical home ventilation guidelines, you will see that in order to enable and provide Intensive Care at Home, all staff need to have a minimum of two years ICU experience. Here at Intensive Care at Home we employ hundreds of years of ICU nursing experience, pediatric and adult intensive care nursing experience that we bring into the community. I do understand that we are the only organization probably worldwide that has that much intellectual property in an organization that goes out into the community and enables patients to live at home instead of intensive care. And that’s amazing. That is really amazing.
So, where to from here? Obviously, that’s the selection criteria for staff, for nursing staff. Then obviously there needs to be equipment set up such as need ventilators. You need at least two ventilators. You need monitors. You need suction machines. You need emergency equipment such as a back valve mask or a resuscitator. You need spare tracheostomy tubes. You need a tracheostomy dilator. You need a speaking valve. You need oxygen that can come in form of oxygen cylinders or oxygen concentrators.
We need a hospital bed, a recliner chair, ideally, a portable hoist to begin with. Maybe a seating hoist down the line. A hoist is also named for a lifting machine. So, medications need to be made ready to go home, but a lot more is possible at home than you think there is. And the house doesn’t necessarily need to be remodeled. We have looked after patients at home in some small flats, small apartments.
Again, what’s needed here is a mindset shift rather than anything else. Mindset shift is critical. It’s not so much the location or we can’t do it or that’s all nonsense. It’s a case of mindset shift. We can do it. We’ve done it for nearly eight years. And I was doing this type of work over 20 years ago in Germany and we were doing it there and then. So, anyone who says that can’t be done has not done their research.
And we certainly have the workforce knowledge, accreditation, and intellectual property to make it happen for pretty much any patient, long-term patient in ICU, adult or child to go home. On that note, also, if someone is on noninvasive ventilation such as BiPAP or CPAP and stuck in ICU, we can look after BiPAP and CPAP ventilation at home as well. We are also looking after patients at home on TPN. TPN stands for total parental nutrition, also known as IV or intravenous nutrition.
So that can all be done at home. And it doesn’t have to be complicated. That’s the other thing. People think it’s complicated. It’s not complicated. It just needs the experts to make it happen. And we are so specialized on this niche that we know what to do when it comes to taking patients home from intensive care and making a seamless transition to a home care environment.
So, I hope that helps that no matter how long your loved one has been in intensive care with a tracheostomy, there’s really nothing stopping us from taking your loved one home, especially if you are in Australia. We operate in all major metropolitan areas in Australia, and if you have a loved one in intensive care, if you’re below the age of 65, you should get NDIS (National Disability Insurance Scheme) funding. If you’re above the age of 65, you should get Department of Health funding or you might come through an insurance scheme such as a motor legal accident, God forbid scheme like the TAC (Transport Accident Commission) in Victoria, like Icare in New South Wales or any other scheme in other states when it comes to motor vehicle accidents or work cover insurance, whatever the case may be.
Other funding avenues are the DVA, the Department of Veteran Affairs, and you should also contact us if you need a specialist support coordinator for the NDIS application and for the NDIS funding. In any case, you need to contact us if you need help. We have been involved with the advocacy for all of our clients from day one, and it really helps because, again, most organizations have really no idea what they’re talking about when it comes to Intensive Care at Home and mechanical ventilation at home and tracheostomy. It has to be safe.
I can tell you now that if it’s not safe, if it’s not according to the mechanical home ventilation guidelines and if people try to take shortcuts, it costs lives. So, to illustrate that, we had clients at home that where we were funded for night shifts only. They were all having a tracheostomy, some of them were ventilated, some of them were with the tracheostomy but not ventilated and we were funded for the night shift only during the daytime.
There was only family members or support workers, disability support workers. I think all three clients passed away just as we predicted at the time during the daytime because families or support workers could simply not manage a medical emergency. And the NDIS needs to take responsibility for that. We believe that it was gross negligence where the NDIS didn’t fund, despite us warning the NDIS that this is what will most likely happen. They were laughing at us, and it cost three lives. One of them was a five-year-old boy, one of them was the 17-year-old girl who was four weeks away from having the tracheostomy removed, and one of them was a 60-year-old lady with a tracheostomy. So, we will not give up advocating for our clients. We will keep putting the facts on the table here in these videos so that the general public can be educated, and we’ll go from there.
So, if you have any questions, please type them into the chat pad. You can also call in live on the show. If you are in Australia, you can call in life on the show now on 041-094-2230. That is again for our Australian viewers, 041-094-2230. For our US audience or North American Audience, Canada as well, you can dial in live on the show on 415-915-0090. That is again, 415-915-0090. And if you’re in the U.K., you can dial in on 0-118-324-3018. That is again, UK 0-118-324-3018.
So, if you have any questions, tap them into the chat pad or just contact us through also intensivecareathome.com or through intensivecarehotline.com. You can contact us through those websites as well for any questions. Again, if you have a loved one in intensive care, if you want to go home or if you have questions around intensive care, contact us through intensivecareathome.com or intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected] or [email protected].
Also, have a look at our membership for families in intensive care at intensivecaresupport.org. There you have access to me and my team 24-hours a day in a membership area or via email, and we answer questions there around intensive care and intensive care at home 24-hours a day. If you need a medical record review, please contact us as well. We can help you with the medical record review, while still your loved one is in ICU or after ICU especially if you suspect medical negligence. We often review medical records in real time because in this day and age, they should be online in real time and the hospital should just give you access to the medical records in real time through a URL and the username and a password.
I would very much appreciate if you shared this video with your friends and families. If you subscribe to my YouTube channel for regular updates for families in intensive care and Intensive Care at Home, and also regular YouTube live streams. I would also appreciate if you click the notification bell and if you comment below what you want to see next, or what questions and insights you have from this video.
There will be another YouTube live next Sunday, 10:30 AM Sydney-Melbourne Time, which is 6:30 PM Eastern Standard Time. Looking forward to seeing you then. Take care for now.
This is Patrik Hutzel from Intensive Care at Home and Intensive Care Hotline. Have a wonderful weekend. 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.
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.
So we are also an NDIS (National Disability Insurance Scheme), 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.