Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED”, I am here with a live stream today, where I want to answer your questions if you have a loved one in intensive care. And this is one of the most commonly asked questions for families in intensive care and it’s a question that we get all the time. And today’s live stream is about.8
How to Avoid LTAC (Long-Term Acute Care) When Your Loved One is Ventilated with a Tracheostomy in ICU! Live Stream!
Welcome to intensivecarehotline.com livestream. Thank you so much for coming on to today’s livestream.
Today’s topic is, “How to avoid LTAC when your loved one is ventilated with tracheostomy in ICU?” And now this is a topic that is very close to my heart because we are dealing with so many families every day that have this specific issue and this is predominantly today for our friends in the United States, to our friends and clients and interested parties in the United States because generally speaking, LTACs don’t exist outside of the United States. They don’t exist in Canada, they don’t exist in the UK, they don’t exist in Australia, they don’t exist in European countries. It’s something that seems to be very unique to the United States. So again, today’s topic is, “How to avoid LTAC when the loved one is ventilated with the tracheostomy in ICU?” Now let’s look at some housekeeping issues before we get and dive right into today’s topic.
So in case, you wonder what makes me qualified to talk about today’s topic, simply, I am an intensive care nurse by background. I have worked in intensive care for over 20 years in three different countries. Out of those more than 20 years, I have worked for over five years as a nurse unit manager in intensive care and I’ve looked after thousands of critically ill patients and their families in ICU. I have been consulting and advocating for families in intensive care all over the world since 2013, for nine years now, coming close to 10 years. And I’m talking to people all over the world every day when they have a loved one in intensive care.
I also am the founder of Intensive Care at Home where we provide nursing services at home predominantly for long-term ventilated patients with tracheostomy. So the whole arena of ventilation and tracheostomy is very dear to my heart. It’s something that I spend a lot of time on every day because we have so many clients for Intensive Care at Home, but also for the hotline for Intensive Care Hotline dealing with ventilation and tracheostomy and there’s a lot of work that goes into that, a lot of advice that goes into that. It’s a highly specialized area.
Now, if you have any questions in regards to today’s topic, just type them into the chat pad or you can also call in the show later, once I’ve gone through my main topics today, I can get you to call into the show and you can ask questions on the topic today and if they’re not related to today’s topic but intensive care related, you can ask them anyway or if they are Intensive Care at Home related, you can ask them anyway and we can go from there.
Now, where do I want to start today? I actually want to start with an email that one of our readers has sent to us and I really want to read out the email to you so I can set the scene a little bit for today. So this is an email from a client in the U.S.
“Hi Patrik, I’m looking for your insights regarding my father who has been in the ICU for a prolonged hospitalization. Each time we have tried putting him in an LTAC (Long Term Acute Care), it has resulted in a cardiac arrest or being back in the ICU within days or weeks. He’s a tracheostomy patient on a ventilator and we are looking for someone who has the skill set to effectively wean him off to get to decannulation of the tracheostomy which he is a candidate for, provided we can effectively wean off the ventilator later. We have successfully capped the tracheostomy two to three hours a time for multiple days in a row, but as soon as we remove him from intensive care as “next steps,” his condition deteriorates fast without appropriate care in those other settings like HDU or progressive critical care where they admit they are not equipped for tracheostomy patients or LTAC, which have also admitted similar sentiment. Any information or insight is much appreciated. We are based in the United States. Thank you.”
And I’ll keep the name hidden, of course, don’t want to expose this client. Now this email speaks volumes. Email speaks volumes about what I want to talk about today and it really sets the scene.
So in the United States when patients are in intensive care and they end up with a trach, 9 times out of 10 from what we are seeing, it’s a vehicle to send someone out of intensive care and try and push them out to LTAC. Now, LTAC stands for long-term acute care or LTACH with an H at the end stands for long-term acute care hospital, same thing and the same issues that come with the LTACs. So what we are seeing across the board is that LTACs are the better version of a nursing home, often staffed by registered nurses, but no doctor on site or if there is a doctor on site, it’s usually only daytime hours. It’s only sort of 9:00 to 5:00 . Well, when someone is on a ventilator, things don’t just happen 9:00 to 5:00, they can happen 24 hours a day.
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So that’s the first pet peeve that I have with ICU patients going to LTAC, that’s simply there’s no skill in LTAC and ICUs are trying to “sell” you on sending patients to LTAC because they can be rehabilitated. That is a whole lot of nonsense. That’s a whole lot of nonsense. That’s their selling point, but the reality is that there’s no rehabilitation in LTAC. The rehabilitation unfortunately doesn’t take place in ICU either in the United States and so a lot of patients are in no man’s land, so to speak.
ICU is just doing their things, the medical things to keep people alive, but they’re not really mobilizing them and they’re not really doing the physical therapy that’s necessary to get your loved one off the ventilator and that can be really frustrating, heartbreaking, and very debilitating to your loved one and if they do go to LTAC, you go there with those huge expectations and then only to find them disappointed, because if you look up LTACs, if you look up their online reviews, they are shocking at the best of times.
Absolutely shocking and then what we’re finding is people go into LTAC and then in ICU generally speaking, the nurse-to-patient ratio is one-to-one, one to two at the most and that’s with an ICU nurse with a respiratory physician, a respiratory therapist with ICU doctors, Allied Health, and then they’re going into LTAC and all of a sudden no more ICU nurses, no more doctors there 24 hours a day, let alone intensive care doctors. The nurse-to-patient ratio goes down. It’s going from one to one, to maybe one to four, one to five, sometimes what we’re hearing one to eight or one to 10 overnight. I mean the care standards are literally dropped by 10 miles. That’s the best way to describe it as far as I can see. So to illustrate that even further, when your loved one is in intensive care with a ventilator and the trach, they’re probably the most vulnerable they can ever be.
They’re probably one of the most vulnerable patients in a hospital and then all of a sudden ICU says, oh, well we need to go to LTAC instead of keeping them in ICU, yet they are at their most vulnerable state ever. That is insanity in my mind. Even if on the other end there was better care provision and there was more safety, I would still say that it’s insanity to send someone to LTAC in such a vulnerable state.
Let me illustrate that with another example and if you are watching my quick tip videos, I’ve put up a couple of quick tip videos in the last few days where one of our clients asked me to get on the phone with an LTAC and asked some clinical questions and we did that. I think it would’ve been about a week ago. Yeah, it would’ve been about a week ago. I was on the phone with a client to the LTAC and she got sent out of ICU a few days earlier against their objection.
So, she didn’t go with consent and I’ll come to the consent issue a bit later and then I was on the phone to this nurse who looked after our client’s mom and then the nurse says, “Oh, your mom isn’t doing well. She’s got pneumonia,” and if it hadn’t been up to me probing, the nurse would’ve just left it there. So then I was obviously asking all the clinical questions that go hand in hand with when someone is having a pneumonia and is on a ventilator, I was asking all the questions, what ventilator settings is the lady on, what’s her FiO2 (Fraction of inspired oxygen), what’s her PEEP (Positive end-expiratory pressure), what are blood gases and then she says, without flinching, she says, “Oh, your mom is on 80% of FiO2.”
That’s 80% of oxygen support on the ventilator room air, the air that you and I are breathing in is 21% of oxygen and this lady is on 80% of oxygen that’s significantly higher than room air.
So I knew immediately that something was very wrong with this lady and then I asked the nurse what medications is she on, and what are her arterial blood gases, and then she was sort of getting more and more quiet with her answers because she simply didn’t know and when someone is on 80% of FiO2, their life is literally hanging at a thread and the nurse didn’t know what exact ventilator setting she was on.
She didn’t know what her blood gases are. That is intensive care nursing 101, people need to know and that just illustrates what I said in the beginning, that when patients go from intensive care to LTAC, the skillset more or less disappears and the care that’s being delivered is based on profit margins but not based on clinical need and that pretty much should tell you everything you need to know about what’s happening in those LTACs.
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I then said to the nurse at the time, I said, “Well, this lady should better go back to ICU very quickly because she should not belong. She doesn’t belong into this LTAC where they simply are not equipped to look after ventilated patients,” and then I said to our client that if the LTAC doesn’t send her back to ICU, she should look for an ICU bed herself.
Anyway, cutting a long story short, two days later the client contacts me again and says, and I think that might’ve been last Monday and then the client says, “Patrik, I am so sorry. I need to let you know that my mom has passed away in the LTAC,” and I wasn’t surprised by the slightest because she needed to go back to ICU as quickly as possible, but LTACs are even lacking the warning sign system when patients need to be readmitted back to ICU, right, but it just goes to show it’s cruel, it’s cutthroat.
It’s almost like they’re murdering people because of the way the system is structured, and the way the system is structured simply sucks. It’s not in the patient’s and family’s best interest. Now, again, how can someone that’s on a ventilator with a tracheostomy in ICU, probably one of the most vulnerable patients in a hospital at that particular part time, go to an LTAC where the care standards simply disappear and are not there? No ICU nurses, no, ICU doctors, nurse to patient ratio drops. Anyone with a ventilator and a tracheostomy, even without a ventilator and only a tracheostomy needs to have an intensive care nurse 24 hours a day and that is evidence-based and I will link to that below this video to the mechanical home ventilation guidelines that only intensive care nurses with a minimum of two years ICU experience are qualified to look after patients with a tracheostomy and or a ventilator including BiPAP or CPAP, non-invasive ventilation with a mask. The standards are there, just no one seems to be sticking to them and it costs lives.
So that illustrates the challenges in the environment and once your loved one leaves intensive care and goes to LTAC, it’s a bit like, yeah, you’re going from an ICU to a better version of a nursing home. It’s just shocking. It’s all about money. It’s about money flow, it’s about managing ICU beds. It’s not about clinical relevancy and that is very concerning. That is very worrying and it really comes down to families asking the right questions in those situations.
Now, coming back one step and talking about consent, right. There are many situations that we are facing when families come to us and they say, “Oh, tomorrow they’re going to send my loved one out, and they told me they will do it anyway even though I don’t want it.’ So here is our advice in those situations. You need to ask for the hospital discharge policy and the hospital discharge policy 10 often says that they can’t discharge patients without either patient consent or without family consent. That should be an easy fix.
Now, you might hear from the ICU that they say, oh, the insurance stops paying and they’ve already contacted us the insurance and told us that they will stop paying, blah, blah, blah. Here’s my advice on that. Unless you hear it from the insurance directly, unless you hear it from the horse’s mouth so to speak, I would not worry about it. I would not worry about it. If the insurance contacts you directly as the power of attorney or next of kin, fair enough, they might have a point. If you hear it only from the hospital, it’s just politics. It’s just hearsay. It’s just hearsay. Get it from the horse’s mouth, which is the insurance.
Next, God forbid if someone does go into LTAC, they often bounce back into ICU in no time. Now again, to illustrate this further, your loved one on ventilation and tracheostomy, at the most vulnerable state they’ve probably ever been and then families say, and then hospitals say, you know, need to go to LTAC, and then they go to LTAC and then they bounce back to ICU within a couple of days. That in and of itself is insanity given the vulnerability therein, but more importantly, if the ICU the discharging ICU doesn’t have a bed anymore, right, they’ll end up in another ICU, that means they’ve been to three different hospitals slash facilities within potentially days or weeks. That again is insanity and I believe it’s in my mind that is medical negligence. Sending people on ventilators with tracheostomies from place to place is simply not safe, simply not appropriate.
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Next, we generally advice that there are so many families that come to us and they say, “Hey, I want to find out whether tracheostomies the right thing to do for my family member?” And we say, “Well, depends. A tracheostomy might well be the right thing to do. Tracheostomies can be wonderful things, but the reality also is that most ICUs in the U.S. are not transparent.” They will advocate for a tracheostomy, but they’re not telling you that as soon as your loved one has a tracheostomy, they’re a strong candidate to go to LTAC. They’re not telling you that part. It’s almost a bait and switch tactic where they want you to give consent for a tracheostomy, and next thing you know, they’ll be sending your loved one out to LTAC.
Now, how can you avoid that? So when they ask you for a trach, they will often also ask you for a PEG (Percutaneous Endoscopic Gastrostomy) tube. Often in ICU, especially in the U.S., trach and PEGs go hand in hand because ICU are under the impression that if you need a trach, you also need a PEG tube, need a feeding tube. Now I can assure you nothing could be further from the truth and again, whilst PEG tubes have their time and their place. We advocate against PEG tubes simply because PEG tubes have a level of permanency about them that makes people complacent. What do I mean by that?
So once someone has a PEG tube, people will try and feed patients because nutrition can be given via the PEG tube and if nutrition can be given via the PEG tube easily, why would you bother feeding a patient? Why would you bother giving a patient oral nutrition?
Well, we are humans. We’ve been eating for millions of years. Why would we all of a sudden try to avoid that? Now again, PEG tubes have their time and their place, but when someone’s in ICU for a few weeks, it’s definitely not the time and the place. You can happily continue with the nasogastric tube that’ll do the trick just as much as a PEG tube and it’s easily reversible. You can change it. It’s not an operation, whereas a PEG tube is actually a smallish operation, a smallish surgical procedure. If you can avoid that, I would avoid it.
But more importantly, once your loved one has a trach and a PEG, he can be sent, he or she can be sent to LTAC, whereas without a PEG tube, no LTAC will take them. So by you avoiding a PEG tube simply gives you all the leverage you need to keep your loved one in the right environment until you are ready or until your loved one is ready or until if your loved one can be weaned off the ventilator in ICU, that would be the easiest way to deal with it because then you don’t need to bother about a PEG and you can go onto a normal or “normal” rehab, whatever that means and whatever that looks like. So that sets the scene there a little bit, I would hope. So, you got to move heaven and earth to let your loved one not go to LTAC.
The other thing that we’re seeing with LTAC is that often LTACs are hours away from the hospital. So if you are in, I don’t know, we’ve seen situations where, especially in Florida, and I don’t know why, apparently there are no LTACs in Florida. I don’t know whether that’s accurate or not, but we’ve had some situations in Florida in particular where clients were sent out to Georgia, to the state of Georgia to LTAC because there were no LTACs in Florida and I’m not talking about border regions where you are close to the border in Georgia. I’m talking about South Florida. So that’s the situation there.
Now, how can you avoid it? (A) ask for hospital discharge policies. They will most likely reaffirm that a patient can only be discharged from ICU with your consent or with the power of attorney consent, that’s number one. Number two, do not give consent to a PEG tube. We’ve done some articles and research on why a nasogastric tube is just as good as a PEG tube. You can get some articles there on our website. I have worked with patients in ICU that had a nasogastric tube for up to six months, potentially longer, no need for a PEG tube. The PEG tube really makes patients permanently disabled, if you will, by almost pushing nutrition aside and saying, “Well, we’ve now got a PEG tube, now we can just pour the food in through a PEG. Don’t worry about spending all that time feeding a patient,” God forbid, right? So don’t give consent to a PEG unless for a fact that your loved one can definitely not be coming off the ventilator.
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So what else? Again, I can talk about health insurances. With the health insurance, if you don’t hear from the health insurance, you should assume that everything is covered. Obviously do your own checks, but if the hospital comes to you and says, “Oh, the health insurance will stop covering,” don’t take that for gospel. Find out for yourself and if you don’t hear it from them, assume it’s not happening. That would be my advice there and then lastly, the email that I read out in the beginning where someone writes an email about describing their experience in LTAC, we’ve seen similar emails over the years. It’s not unique, unfortunately, it’s not a unique email, not a unique experience.
Next, the other thing that we are seeing over and over again is when we are starting to ask questions, whether we ask those questions directly ourselves or whether we act on a patient’s behalf and we give them the questions, we are finding that there’s so many hidden opportunities. So what I mean by that is once someone actually starts to ask all the right clinical questions, you will actually see that the dynamics change. So for example, the ICU might be telling you, oh, your mom, your dad, your spouse can’t be weaned off the ventilator and then we say, “Well, show us the proof. Show us the evidence, show us the pictures, let us talk to the doctors and nurses?” And then we often find, well, there is a very good chance that your loved one can be weaned off the ventilator in the next few days. No need for LTAC.
So you got to really look at the situation from all sides. You got to talk to the right people. You got to talk to professional advocates and consultants like we are here at intensivecarehotline.com, and that’ll help you with getting the outcomes that you would want. So that is really important to know as well.
Okay, so I hope that helps. That also wraps it up for now. I mean, I’ve made so many videos about how to avoid someone going to LTAC, you shouldn’t avoid the tracheostomy for longer than you need to. You should be having that window of opportunity around the 10-day to 14-day mark to do a tracheostomy. You shouldn’t delay there, but you shouldn’t automatically go over to the PEG tubes right away for the reasons that I just mentioned. I would hold off on a PEG as much as I can. Yes, they would be putting pressure on you because you will be perceived as difficult because it means they can’t send your loved one to LTAC, which is the ultimate goal.
Okay. So, the advocacy really helps. The advocacy is critical and you need to ask the right questions. You need to have someone there representing you so they know you’ve got someone on an even field with them, i.e., a clinician that can understand intensive care inside out and that can challenge them on any clinical level. Often there are many loopholes that we can exploit to keep your loved one in intensive care instead of going to LTAC, but you also need to give us enough warning and you need to do your research pretty much from day one when your loved one is in intensive care.
There are too many families that reach out to us the day when they’re having a trach, they say, “Oh, should we consent to this? They’re telling us once the trach is done we’ll send them out to LTAC.” You got to do your research from day one. Okay. I think I’ve covered all bases for now, but if you have any questions, how to avoid your loved one going to LTAC from ICU on a ventilator with a trach, now is the time to ask the questions.
You can type them into the chat pad or you can dial in live on the show. I’ll give you the numbers now. If you are in the U.S., you can dial in on 415-915-0090. That is again, U.S. 415-915-0090. If you are in the UK, you can call 0118 324-3018 and if you’re in Australia, you can call 041-094-2230. That is again, Australia 041-094-2230 and if you don’t want to dial in the show, that’s great too. Just type your questions into the chat pad, even when you are watching this now, when it’s not live, type your questions into the chat pad or below the video and I will answer them and get back to you.
So, if you have a loved one in intensive care, you should 100% check out intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected]. You can also check out our membership for families in intensive care, and you can do so at intensivecaresupport.org. Also, if you like the video, give it a thumbs up. Subscribe to my YouTube channel for regular updates for families in intensive care and Intensive Care at Home.
Click the notification bell, comment below what you want to see next and or what insights you have from this video. Share it with your friends and families of course and if there are no other questions, I do want to wrap this up. We’ll be back again next Saturday, 8:30 PM Eastern Standard Time in the U.S., which is 10:30 AM Sydney, Melbourne time in Australia on a Sunday. Our topic for next week will be… Where is it? Our topic for next week will be… Hang on.
Our topic for next week will be, “The evidence-based, why a tracheostomy patient at home needs ICU and pediatric ICU nurses 24 hours a day”. That’s the topic for next week and that is also the case in LTAC and it’s not happening and that’s why it’s dangerous, but I talked about it sort of halfway in the video that you need an ICU nurse 24 hours a day for someone with a tracheostomy. Full stop.
Okay, thank you so much for watching. I’ll wrap it up here. I’ll see you again next week in the same channel, same time. Keep an eye out on our quick tip videos during the week.
Take care for now.
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- How to ask the doctors and the nurses the right questions
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- Why decision making in Intensive Care GOES WAY BEYOND your critically ill loved one’s DIAGNOSIS AND PROGNOSIS!
- The 4 ways you can overcome INSURMOUNTABLE OBSTACLES whilst your loved one is critically ill in Intensive Care!
- How to get PEACE OF MIND, more control, more power and influence if your critically ill loved one is DYING in Intensive Care!
- The 5 QUESTIONS you need to ask, if the Intensive Care team wants you to DONATE your loved one’s ORGANS in an END OF LIFE SITUATION!
- MY PARTNER IS IN INTENSIVE CARE ON A VENTILATOR! THE INTENSIVE CARE TEAM WANTS TO DO A TRACHEOSTOMY AND I WANT TO HAVE HIM EXTUBATED! WHAT DO I DO? (PART 1)
- How MEDICAL RESEARCH DOMINATES your critically ill loved one’s diagnosis and prognosis, as well as the CARE and TREATMENT your loved one IS RECEIVING or NOT RECEIVING
- WHAT WOULD YOU DO if you knew that you COULD NOT FAIL, whilst your loved one is critically ill in Intensive Care
- How the Intensive Care team is SKILFULLY PLAYING WITH YOUR EMOTIONS, if your loved one is critically ill in Intensive Care!
- My father is in Intensive Care ventilated with LIVER FAILURE and KIDNEY FAILURE, I DON’T THINK HE WILL SURVIVE! HELP
- HOW TO GIVE YOURSELF PERMISSION TO HAVE PEACE OF MIND, CONTROL, POWER AND INFLUENCE WHEN YOUR LOVED ONE IS CRITICALLY ILL IN INTENSIVE CARE!
- My father has been weaned off the ventilator in Intensive Care and still has the Tracheostomy in. When can the Tracheostomy be removed?