How to Transition from Intensive Care to Intensive Care At Home?

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.

In last week’s blog, I talked about,

SUCCESSFUL TRANSITION & BETTER STANDARDS OF CARE FROM PEDIATRIC ICU TO INTENSIVE CARE AT HOME FOR MY TODDLER WITH A TRACHEOSTOMY.

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

https://intensivecareathome.com/successful-transition-better-standards-of-care-from-pediatric-icu-to-intensive-care-at-home-for-my-toddler-with-a-tracheostomy/

In today’s blog post, I want to answer a question from one of our clients through live stream and the question today is

How to Transition from Intensive Care to Intensive Care At Home?

I want to start off with what makes me qualified to talk about this topic? I am an intensive care nurse by background. I have worked in intensive care for over 20 years, and I’ve also worked with many clients/patients at home that need Intensive Care At Home. I initially started out doing this in the early 2000s in Germany. I was part of the first nursing service in Germany, setting up Intensive Care At Home. We were pioneers then, and I worked with a fantastic group of people there. With some real visionaries, with some genuine passionate, intensive care nurses.

Big shout out to Joerg Brambring and Christoph Jaschke that are still running this in various parts in Germany. Real pioneers, real visionaries. Amazing people who were able to create an amazing team there and really change lives, change the industry, give people and families a choice, but also gives hospitals and intensive care units a choice. Saving money for health care funding agencies, mainly for health insurances, because they all of a sudden had the opportunity to save half of the cost of an intensive care bed.

After that I ventured out to work and go back into intensive care. I worked overseas. I worked in the United Kingdom, in intensive care. That’s where I did my critical care training. Started to work in Australia eventually. Worked as a nurse manager in intensive care and then eventually started to set up my own service here in Melbourne Australia, Intensive Care At Home.

Again, pretty much copying what we were doing in Germany at the time. And we have now delivered Intensive Care At Home services for dozens of clients here as well. And I want to talk about the transition from intensive care to Intensive Care At Home, and what that looks like in reality, because I know many of you have a loved one in intensive care, and many of you want to take your loved one home.

And also if you are a health professional watching this, if you are a doctor or a nurse in intensive care, I also want to educate you about what our service Intensive Care At Home can do for your intensive care unit. How it fits in with intensive care units. Because at the end of the day, what Intensive Care At Home does, it creates a win-win situation for all stakeholders that deal with us. And that’s starting from patients, families, health funding agencies, such as health insurances, NDIS, the TAC, the DVA, iCare, Medicare, Medibank, HCF, Medicaid in the US, it doesn’t really matter. It’s a win-win for everyone because we’re reducing the cost of an ICU bed by 50%. And obviously on a family level, the payoffs are around being in your own home. Rather than commuting to ICU every day, being with your loved one, you can have the same service at home and you can continue care and treatment at home.

The other thing that I want to highlight before we go into the nitty gritty of what a transition from intensive care to Intensive Care At Home looks like, I also want to highlight, when should you be looking for Intensive Care At Home? At what stage? Sometimes we have inquiries of people that have been in intensive care for a couple of days, for a couple of weeks, and they’re asking, “Oh can I go home?” And at that stage, it might be a little bit too early. We are focusing predominantly on long-term intensive care patients, mainly patients that are long-term ventilated, can’t come off the ventilator, have a tracheostomy.

Having said that, there are other patients that we can take home earlier. And we certainly have done that. Things like we have done for example at home is palliative care including “one-way extubations.” Meaning that we have focus on taking intensive care patients home that had the breathing tube removed, which was an end-of-life situation. Meaning, the purpose of removing the breathing tube was to have someone approach the end of life, but you can do that at home. You don’t need to do that in intensive care. Intensive care units are not good places to die. And, if you can have an end-of-life situation on your own terms, and in your own home, why would you not do that?

And again, from an intensive care perspective, it’s a case of freeing up that ICU bed that is in high demand, freeing up the ICU staff so they can look after other critically ill patients and let us deal with the home care aspect. That’s what we’re specialized on. So that’s sort of setting a little bit of the frame. The ideal client for us, and that we can help you take home, is really someone that’s been in intensive care for a few weeks, maybe even a few months on a ventilator with a tracheostomy. Sometimes they might be intermittently ventilated, maybe they have time off during the day, are ventilated overnight, but nevertheless, even the tracheostomy in and of itself, means they need an intensive care nurse, 24 hours a day.

Even if someone is not ventilated, and has a tracheostomy, they still need an intensive care nurse, 24 hours a day. It really prohibits them from leaving intensive care. Why do I say that? I said that confidently because we have looked after clients at home, either ventilated or with a tracheostomy or both, that did not have 24-hour nursing care. And we were mainly doing the night shifts, and there was no funding for an intensive care nurse during the day at home. And even though, we’ve warned funding bodies, we’ve warned families, we’ve warned hospitals that only funding the night shift for someone with a tracheostomy/ventilator, is simply a risk that patients would pass away during the daytime. And unfortunately, this is what’s already happened.

We’ve had three clients last year in 2020 that had funding for night shifts, and all three clients within the span of four weeks, passed away during the daytime because families or support workers that are not intensive care nurses obviously could not manage medical emergencies. By the time the ambulance was called, and the paramedics arrived, those clients passed away.

Two out of those three clients were children. One five-year-old, one 17-year-old, and the 17-year-old-teenager was a few weeks away from having the tracheostomy removed. So we are still beyond words. We’re still reeling from these situations. And I can only imagine what those families are going through. But we’re not making it up when we say you can’t go home and you can’t replicate intensive care by having family members looking after their loved ones by having even worse, support workers looking after them, or even general nurses without intensive care experience, you can’t do that. It’s literally a life or death decision that you’re making.

And it’s also backed up by evidence. If you look on our website Intensive Care At Home, there is a section about home mechanical ventilation guidelines and those home mechanical ventilation guidelines are evidence-based, and are based on decades of research now from Germany where Intensive Care At Home has been around since the late 1990s, early 2000s. And clearly the only way a patient at home on ventilation on tracheostomy, even on non-invasive ventilation/tracheostomy can be safely looked after, is with intensive care nurses that have a minimum of two years ICU experience or pediatric ICU experience. That’s the only way you can replicate intensive care in the home. And that is exactly what we do here at Intensive Care At Home. We employ hundreds of years of intensive care nursing experience. And that’s why we are, as far as I’m aware, as of the time of this recording, that’s why we are the only service in the English speaking countries that can take patients from intensive care to a home care environment.

As I mentioned earlier, this has been happening in many German-speaking countries for over two decades now. Predominantly in Germany, Switzerland, and Austria. And I also know that other European countries have now been taking patients home from intensive care directly to continue intensive care treatment at home. And I believe other countries are Italy, France, the Netherlands, and so forth.

So, the bottom line is this, that if you have a loved one in intensive care, for many weeks, many months, I mean your loved one will be depressed, you are probably depressed because you can’t see any progress, you are stuck in ICU, especially at the moment with COVID, many ICU’s still have visitation limits. And the reality is there is no quality of life in intensive care. Just simply isn’t. Whereas if you go home, there is quality of life at home for you, and for your family member. You are in control of your routine, you are in control of your day. You can have family come and go. Talking about children, we have children that go back to school, go back to kindy. We have adults going back to work or can work from home as long as they can use a computer often.

You can’t compare intensive care with Intensive Care At Home really because the advantages, you can list them, they’re endless. And again, from a hospital perspective, from an intensive care perspective, we are saving 50% of the cost of an intensive care bed. Intensive care units need their beds urgently. It’s a win for everyone.

So let’s break it down and let’s look at “How do you make a transition possible from intensive care to Intensive Care At Home?” So what we often do is, especially if we have a little bit of time, we often start with doing some shifts in the hospital with our team to get to know the client, get to know the family, get to know their preferences, look at their medical/clinical conditions. Look at their ventilation, look at their tracheostomy. And even if they don’t have a tracheostomy, if they’re, for example, ventilated with a mask, BIPAP, CPAP, NIV (noninvasive ventilation), we still need to get to know the intricacies of all of that, work with the discharging intensive care team so that we can learn, how can we adapt the clinical care at home to maximize quality of life or in some instances, quality of end-of-life. Making sure we get to learn the routine that clients prefer. What’s their day and night rhythm like? When do they want to get out of bed? How often do they want to get mobilized? Is there a good time to take them to a shower, is there a good time to get them on a commode? So they can move their bowels or whatever it is they need done. What are their routines around feeding?

Some of our clients might have a neurological condition, some of our clients might have regular seizures. And again it’s then a case of getting to know their patterns. Getting to know how do you manage a seizure for example, does it compromise their airway? What other risks around a seizure for example? So what medications is a client on? What are the types of medication intake? Can they potentially take those medications orally? Do they need them crushed and given through a PEG tube or through a nasogastric tube? Do they need IV fluids? Do they need IV fluids even at home? Do they have a PICC line? Do they have a central line? Do they have a Hickman’s line? So all of these questions need to be answered. And that’s how we often get started, by doing some shifts in the hospital and getting to know the client and go from there. And also the client and the family getting to know our staff which is obviously also very important because it does take time to build trust of course. It does take time getting to know a client, getting to know the family, but also for the client and the family getting to know us and making sure that you are comfortable with the staff that we’re sending you. And there can be a little bit of trial and error.

And most of the staff that are working for us, I believe are really cut out for Intensive Care At Home. And even though I believe all of our staff are cut out to do this work, sometimes they may just simply not be the right fit for your family, and it’s no hard feelings. It’s just a case of us matching you with the right staff, and the longer we’ve been doing this, the more experienced we’re getting with the selection of staff and also matching them with the right client.

Having said that, I am talking about the ideal scenario here, where I say, we can do shifts in a hospital to begin with. I can tell you, after all these years of doing this, we have been in situations also where we have been asked either by hospitals or sometimes by the Department of Health. Sometimes by Child Protection, we’ve looked after many foster children, medically complex foster children at home. Now sometimes we’ve been asked to take someone home from intensive care, literally overnight, and we wouldn’t be in business if we weren’t in a position to make that happen also.

It is much better to do or to start shifts in a hospital, there’s no question about that. But even if for whatever reason, that is not an option, and it may actually not be an option at the moment with COVID, we may have to start at home straight away. Again, certainly not a novelty for us. We have been able to pull that off many times, and we’ll just adapt to it. But I guess for everyone’s sake, the ideal scenario is to start in a hospital.

So once we’ve gotten to know a client in the hospital, worked with them for a few shifts, obviously had the in-services, the training, on the ventilator. I mean, all of us are intensive care nurses, we certainly know how to operate ventilators by the same token, we may come across a ventilator every now and then that we haven’t heard of before, that is new to us too. So there certainly needs to be some education around the ventilator, for the staff, and also for the family. And often the ventilator companies have their educators. They come out, provide the training, there’s also often online tools, videos, and online resources where one can get education around that.

Obviously we need to know about the tracheostomy. What size? Is there an inner cannula? How often does it need nebulization, how often does the inner cannula need to be changed? What is the plan going forward with tracheostomy changes? From our end, we can often do them at home, but sometimes, the discharging hospital has a preference of doing them in hospital. Sometimes the first few tracheostomy changes might even be done on the bronchoscopy. Again, it varies from client to client.

Obviously before a transition can be made going home, the house needs to be set up with all the right equipment, hospital bed, often hoist or lifting machines. A second ventilator as a backup, at least two suction machines, often a monitor obviously to continue monitoring vital signs. Blood pressure machine, oxygen saturation monitor, sometimes a cough assist machine is needed. Also, it is definitely advantageous, if an allied health team is involved in the discharging process, such as an occupational therapist (OT), physiotherapist/physical therapist, is almost always the case when we take patients/clients home.

Now you may wonder does a house or a home need to be modified before someone can go home from intensive care. Now, if your home needs to be modified, I’d encourage you to do that. But I would also say nine times out of ten, it’s not always necessary and a lot more is possible at home than you think it is. Again most clients that we take home, the house doesn’t need to be modified and we can show you how to work around certain issues in setting up Intensive Care At Home.

Then, other things that we are looking for is obviously, selection of the team, we like to get you involved in selecting staff. We want you to meet our staff and we want you to talk to them and vice versa, of course. It’s got to be the right fit for you and your family. And whilst you’re excited and we are excited taking you home, we are very much in the relationship business. And I think it’s critically important that you feel trust and comfort with our staff. And again, that often only happens over time. It doesn’t happen overnight. Where we have the right team from the get-go, and there is definitely going to be a little bit of trial and error. So as long as you can work with us and we can work with you, nothing that can’t be worked through for a 24-hour roster that you need at home with our team.

So then, looking at obviously the medical setup at home, when patients leave intensive care to go to Intensive Care At Home, generally speaking, they may not be stable. So there definitely needs to be a medical oversight and that can sometimes come from the hospital, can sometimes even come from a general practitioner, can come from a respiratory physician, can come from a pulmonologist, can come from an intensivist. So there’s various ways of setting up the medical governance at home. But it’s definitely not an obstacle to make this happen. Again with our experience team, where we employ hundreds of years intensive care nursing experience, we can liaise with the doctors very closely. But what is important obviously, is that there’s a 24-hour that a doctor is contactable 24 hours a day.

What we sometimes also do is, in certain situations, we might use emergency departments, emergency rooms as a backup if we need, maybe sometimes blood’s taken, a quick assessment. We do advise our staff and our families that depending on the relationships we have with certain emergency departments, make use of them. Maybe they need gloves, maybe they need extra medications. We certainly have those relationships to liaise with hospitals, with doctors closely to avoid hospital readmissions.

That also brings me to KPIs for those of you that don’t know what KPIs mean. KPI stands for Key Performance Indicators. And I believe it’s important that we talk about that because we believe what we have in our service, the KPIs we have in our service, are selected around creating that win-win situation for all stakeholders. So the KPIs that we focus on are, number one, having non-elective readmissions back to intensive care. Well, what does that mean? It means that we are needing to perform to a level where we manage our clients every day that they can stay at home predictably. I mean, nothing would be worse of a client going home, and then they keep bouncing back into ICU. That’s not the purpose of our service. So, that means for us, we need to plan, we need to convene every day, how to make sure that you can stay at home predictably or your loved one can stay at home predictably. And that mainly comes down to managing the clinical situations every day that your loved one or you are presented with. Number two KPI is having 100% of all shifts filled, no brainer. So KPIs for us are quite simple, but they’re also critical for everyone’s safety and sake to make sure that this is working. And we have a track record of achieving those KPIs.

Other things that we have found is certainly, that as time goes on, that the team at home, and you or your loved one, will also benefit if there is a team leader managing the team, leading the team, and liaising with families very closely. Whilst I understand that you want to be in control, and that’s part of the promise of our service. Our families can be in control. It can also be overwhelming having your loved one at home, having a team coming and going at home. But we are finding that everything is running much more smoothly if there is a team leader. But we can identify that over time. Again, it wouldn’t happen necessarily day one.

Other things that we have been doing and that are available now in most metropolitan areas is home x-rays. Home chest x-rays in particular, can be very important for our clients to have x-rays at home. And again, there are no services that can provide that x-ray service at home. Same with pathology services. If someone needs to be having bloods regularly, that can be done at home.

Other things that are important at home are, some patients go home with our service, they need intravenous fluids/IV fluids, and they might have a central line, they might have a Hickman’s line, they might have a PICC line and that can be managed as well. So it’s also then a case of having all the right equipment at home. But again, we are very experienced in making sure all the right equipment is at home to stop hospital admissions.

So I just want to try and answer questions here. If you could give me a second, so I’ve got a couple of questions from Mine. You are saying Mine, “In the USA, hospitals will go after guardianship of 17-year partner because the partner caretaker always brings up head not above 30 degrees while feeding, while turning, urine/bowel motions in bed. They say partner will never come home, even though insurance said partner qualified for urgent care at home, so I should have shut up and sit down.”

Well, I have certainly seen that hospitals go after guardianship, but certainly not what you’re telling me here about because you bring up head needs to be elevated above 30 degrees, which makes a lot of sense to me. I think nothing you’re saying here doesn’t make sense to me. I mean, head of bed needs to be above 30 degrees to avoid aspiration during vomiting. You’re saying, “That was in January now it’s August. Something new in his health. New meds always subscribed when issue presents, no time to diagnose, watch for patterns.” Can you share a little bit more there Mine? Is your loved one in intensive care? Are they ventilated? Why do you think they’d really go after the guardianship? What’s the underlying reason? “Blind/disabled upon arrival to hospital for fall. Immediately put on mechanical respirator.” And your family member, partner, loved one has been on a ventilator since January? While I’m waiting for your answer, I’ll just carry on a little bit more about backup equipment at home.

So I talked about backup ventilator, two cough assists ideally, two monitors, two suction machines, spare tracheostomy tubes, a dilator, resuscitation bag or bag valve mask. Face masks, Guedel airways, potentially nasopharyngeal airways. Oxygen, even though you or your loved one may not need oxygen, you still want to have backup oxygen at home. You ideally want to have a generator at home in case of a blackout. Most ventilators and other machines have internal batteries, but you’ve got to look for the worst case scenario that you can be prepared for potentially a prolonged power failure. You don’t want a power failure happening and then your loved one needs to go back to a hospital because you don’t have electricity at home. So a generator we highly recommend, things like fire extinguishers, fire blankets, should be at home also. So that’s it in a nutshell.

Now Mine you’re sharing more, then you’re saying “Now, back and forth to nursing home rehab though no rehab since March when they filed with court for guardianship. Paralyzed, mute, and still blind. Doctor said, organic food. He said water will not help.” Right. So Mine, what stops you from going home? Is it that you are no longer the guardian? You’re telling me that your partner will qualify for home health care, but it sounds to me like he’s still stuck in the system. What stops him from going home? Is it that you have lost guardianship? If you have lost guardianship, you should seek legal advice. My expertise is more of the clinical side of things, but certainly you should be seeking legal advice if guardianship is an issue. That’s all I can say there. Because logistically, going home on a ventilator with a tracheostomy leaving intensive care, it’s all there. It’s all been done, it can all be set up. Despite what everybody else says, there’s hundreds if not thousands of case studies out there for Intensive Care At Home. So it sounds to me like this is more of a legal guardianship.

Now you’re saying, “Within weeks, they put a DNR for him though no one knows him because of stranger. I was surrogate, but they said he will never come home. I don’t have guardianship, trying to find help since January, but in USA, is not free with liberty. Doctor’s rule, not law.” I disagree there. With guardianship. I cannot help you with guardianship. But what I will say is this Mine, we are working with clients in the USA all the time. And we have worked with lawyers in the USA. So what we do for example with clients in the USA, we have another side of the business, which is called Intensive Care Hotline. I don’t know whether you’ve checked that out. Have a look at the Intensive Care Hotline, where we basically provide consulting and advocacy for families in intensive care. Generally speaking, if there is a guardianship issue, we advise that families seek legal advice. And I would advise you the same to seek legal advice.

Now you’re saying, “The state they filed in says the spouse, it’s domestic partner.” Yeah. Again, Mine, I am not a guardianship expert. That is not my area of expertise. What I will say, after this, send me an email to [email protected]. Send me an email to [email protected] and I’ll tell you why. We have worked with lawyers in the US and I can probably give you a contact that might be able to help you with that guardianship issue. You’re saying, “I called months ago, but we didn’t get to speak.” Yeah. Oh, you called me months… okay. All right, sure, contact me again. I’m here to help.

Okay, Helene, welcome back to the call. You have a question, “If a patient goes on T-piece, what is used to replace the ventilator?” Well T-Piece is the next step to wean someone off the ventilator. So here’s how this goes Helene. So when someone can be weaned off the ventilator, has a trach, the next step for them is, to have the T-piece. And if they can tolerate the T-piece, hopefully they can be liberated from the ventilator. So, what the T-piece does is, it’s moisturizing air, it’s moisturizing the tracheostomy. And sometimes it’s both. It’s humidification, moisturizing and oxygen, depending on the clinical needs of a patient. But basically once the patient is on the T-piece they are liberated from the ventilator. The T-piece is not a ventilator, it’s the next step. Patients are breathing spontaneously if they’re on the T-piece. So that is more or less the replacement, but the replacement really is that a patient is breathing spontaneously. That is the replacement. And all they need is a little bit of humidification, maybe a little bit of oxygen, often some suctioning. The reason they need humidification is simply, when we are breathing through the nose, the nose humidifies the air. But when someone breathes through a tracheostomy, there’s no organic humidification if you will. Therefore they need the humidification from a humidifier or through a nebulizer. I hope that clarifies Helene.

Okay, so Mine coming back to your situation. So you’re saying, “Finances are tight, I understand your expertise but found no lawyers who’d help me object and help me assistance in finding help, especially with American Disability Rights, he’s alone 20 hours per day.” That’s terrible. I’m so sorry to hear that Mine. Yes again, my area of expertise is more around the clinical advocacy rather than what’s involved legally around guardianship issues. But again, I can only encourage you Minnie to reach out to me again after this call and we have some contacts in the United States with lawyers or where I can set you up with someone that can hopefully point you to the right lawyer. I hope that helps.

Okay. So look, I want to wrap this up conscious of the time. Are there any other questions that we haven’t answered? I’ll give everyone a couple of more minutes to type their questions in. I want to thank you so much for coming on to this call, I will do another live stream next Saturday, 8:00 PM. Eastern Standard Time. 10:00 AM, Melbourne time on a Sunday.

Mine you’re saying, “Blind at check in, now paralyzed, mute, because only gave speech valve a couple of times and he said, ‘Hello.’ But then staff kept head below 30 degrees…aspiration.” Oh my goodness. I’m so sorry to hear that. Yeah, and if he’s by himself 20 hours a day and you can’t visit, I can only imagine that you don’t feel in control of the situation. And it would be imperative for you to get guardianship. Mine you’re saying, “Yes, I’m on Roku. So I don’t see links below at all, provide on screen for all with limitations on viewing methods.” I haven’t put any links below as yet Mine. I haven’t put any links there. The links I will put there after the video has been uploaded, then I will put links there. But best way to contact me is send me an email to [email protected] or if you’re in the US you can also call me. Write down this number. You can call me on (415)-915-0090, that is again, US number. (415)-915-0090 that’s where you can call me Mine.

So you are saying that you visited 12 hours a day in March, treated you like dirt. “Always mention the site, email but need to provide on screen for many non-techs.” Okay, sure. You will find all the contact details after the video is. I don’t have live chat here Mine. I always provide all the contact details below the video. Once the video is uploaded. Yeah, so Minnie if you have a pen now send me an email to [email protected]. That is, [email protected] or, I’ll give you my number, (415)-915-0090. That is again, (415)-915-0090 for our viewers in the US.

I’m going to wrap this up now. Thank you so much again for coming on to this live stream, watch out for the next topic next Sunday, next Saturday, if you’re in the US. And take care and look after yourself, look after your families, stay safe, wishing you all the best.

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, Mornington Peninsula, Frankston area, South Gippsland, 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.

Also, we have been part of the Royal Melbourne health accelerator program in the past for innovative healthcare companies.

https://www.thermh.org.au/news/innovation-funding-announced-melbourne-health-accelerator

https://www.melbournehealthaccelerator.com/

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.