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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,
MY MOM HAS MOTOR NEURONE DISEASE AND CAN’T COME OFF THE VENTILATOR IN ICU. CAN YOU HELP ME BRING HER HOME WITH INTENSIVE CARE AT HOME?
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
Can You Live on a Ventilator at Home? INTENSIVE CARE AT HOME Live Stream!
Welcome to Intensive Care at home live stream. My name is Patrik Hutzel and today’s live stream is about, “Can you live on a ventilator at home?” It’s a question we get very frequently and today I want to break it all down for you, especially if you have a loved one in intensive care, being stuck on a ventilator with a tracheostomy. But I know a lot of you also want to know, can you live at home on a ventilator with a breathing tube or an endotracheal tube? And I will break it all down for you in today’s presentation.
So, if you have any questions today, type them in your chat pad. You can also call in live on the show, I will give the numbers later. If you have questions, please keep them to today’s topic, and I will get right to them. If you have questions that are not related to today’s topic, but are intensive care related, you can type them into the chat pad or call into the show later, and I will answer them then.
A little bit about me, you may wonder what makes me qualified to talk about today’s topic. My name is Patrik Hutzel, I’m the founder and director of Intensive Care at Home. I’m a critical care nurse by background. I’ve worked in intensive care/critical care for over 20 years in three different countries. I was part of pioneering Intensive Care at Home in Germany in the late 1990s, early 2000s. And then I started a similar service in Australia as I was immigrating to Australia. And we have now had this service up and running here in Melbourne, Sydney and Brisbane in Australia since 2012.
We are also helping clients in the U.S. to try and get people home. Even though we don’t have a physical presence in the U.S. yet, same in the U.K. We’re trying to help people in the U.K. getting their loved ones home again. We don’t have a physical presence in the U.K. yet, but we are proactively working on that. As part of my work in intensive care and Intensive Care at Home, we’re also running a service Intensive Care Hotline where we consult and advocate for families in intensive care all around the world. And we have done so for the last nine years. So that’s a little bit of background before we go into today’s topic.
So, today’s topic again is, “Can you live on a ventilator at home?” And we have named it Intensive Care at Home livestream. So why have we named it Intensive Care at Home? Because yes, you can live on a ventilator at home with Intensive Care at Home. So, let’s describe the current environment a little bit more in intensive care. If someone is on a ventilator in intensive care, whether they’re on a ventilator with a tracheostomy or with a breathing tube, they are in an ICU, in an intensive care unit, critical care unit, whichever term you want to use.
Why is that? It is because ventilation and tracheostomy are life support, and it requires specialist skills. Keeping someone alive with equipment with machinery requires specialist skills full stop. What are those skills? Those skills are, you need ICU doctors, ICU nurses, ICU physiotherapist, and so forth. That is the prerequisite to have an intensive care unit set up. Now what happens in intensive care is that people come in, they are critically ill. They have life-threatening illnesses that need, again, the specialist skills of intensive care doctors, intensive care nurses, physiotherapists, and so forth. Now, paradigms in ICU have pretty much been that there’s two pathways for patients in ICU. The first pathway is you recover and you go to a hospital floor, a hospital ward, and then you go home or you go to onto rehabilitation. The other pathway is people don’t survive intensive care and die, and that’s the end of that.
Now, with Intensive Care at Home, we have created a third pathway. We can take successfully and evidently take patients home from intensive care with a critical illness, especially if they’re long-term ventilated with a tracheostomy, but we also have intensive care patients at home that are not ventilated, but have the need of an intensive care nurse, 24-hours a day. But to stick to today’s question, which is, can you live at home on a ventilator? The answer is absolutely a clear yes. With the right support structure, which is what we are offering here at Intensive Care at Home.
Now, how do we do it? So, once we have inquiries, either from hospitals, from intensive care units or from families, we’ll set up a team, we’ll organize equipment. And we might even have to help you with organizing funding, but funding is much more easier now than it was 10 years ago because (a) the concept has been proven. There’s research and evidence out that we publish on our website, how it should be done safely or how it can be done safely. And then it’s a matter of selecting the right staff members. And what do those staff members need to have? We are hiring ICU nurses with a minimum of two years ICU experience, ideally with a postgraduate critical care qualification. And that’s our minimum selection criteria. Furthermore, the average ICU experience staff member we have is probably eight to 10 years. So we are literally employing hundreds of years of intensive care experience in our service, which gives us a very strong foundation to having made that innovation, to take patients home from intensive care, to provide the intensive care in the home. And having that skill set with hundreds of years of ICU experience in our service enables us to provide this service safely.
So, what does it look like at home? It looks like you need, from an equipment point of view, you need two ventilators, two suction machines, you need two monitors, you need spare tracheostomies, you need tracheostomy dilators, you need bag-valve masks or resuscitation bags, but we can help you with organizing all of that. And we can also help you with obtaining the funding that is needed for such a service. None of our clients are really out-of-pocket. It’s funded here in Australia, predominantly by the NDIS, by the National Disability Insurance Scheme. But it’s also funded by organizations such as the TAC (Transport Accident Commission) in Victoria or iCare in New South Wales or the Department of Veteran Affairs (DVA). So, there’s different avenues for funding. And keep in mind on an economic level, an ICU care bed cost around $6,000 per bed day, whether that’s here in Australia or in the U.S. Intensive Care at Home can probably be provided for around 50% of that cost. So, really, it’s a win-win situation for all stakeholders, whether it’s the hospitals, whether it’s the funding or the insurances, whether it’s for the hospital who frees up a hospital bed, who frees up staff and equipment. It’s a win-win situation all together.
So, then you might be asking, how long can someone live at home? It really depends. Depends on whether someone is going home for palliative care, depends whether someone is going home for ventilation weaning, depends whether someone might be going home with a C1 spinal injury that is otherwise healthy. But if someone has sustained a C1 spinal injury, they’re quadriplegic and they are dependent on a ventilator for the rest of their lives. And you can’t wean those clients off the ventilator, but they can live a good quality of life at home for potentially for decades.
So, it really depends on the situation and what the goals of care are. And the goals of care really should be driven by you as a family or by your family member. What the goals of care are? Are they end-of-life? Are they quality of life? Are they even more aspirational? Such as, does someone want to go back to work, or to university, if that’s possible. We have had clients where it is possible, and we have clients where it is possible, but we also have other clients where the focus is on end-of-life care. So, it really depends on what you want.
How can it be put in place? It can be put in place with a 24-hour nursing roster, similar to intensive care., Needs a 24-hour nursing roster with 12-hour shifts, eight-hour shifts, depends a little bit on against staff availability, depends on your preferences. Probably also depends on location. So, it depends on a number of things, but the bottom line is that it needs to be a 24-hour roster without interruptions to keep things safe.
Now, I mentioned earlier about evidence-based practice. And if you look on our website intensivecareathome.com, you will find the Mechanical Home Ventilation Guidelines. And unlike in ICU, we are, I believe, the first organization worldwide that actually puts standards in place, how Intensive Care at Home can be done at home safely and how it’s also evidence based. And if you look at the article, the mechanical home ventilation guidelines, it clearly says the only way it can be done safely is if you have an ICU nursing or 24-hours a day. And all those ICU nurses need to have a minimum of two years ICU experience. It’s clear-cut. Otherwise, we couldn’t name our service Intensive Care at Home. It’s as simple as that.
Now, coming back to our original question, can you live at home on a ventilator? I’ve answered the question already. I mainly focus in the last few minutes on ventilation with tracheostomy, but there’s also another situation where patients can live at home on a ventilator without a tracheostomy that’s if they are BIPAP or CPAP dependent, we have a number of clients at home that are not having a tracheostomy but are having BiPAP ventilation with a face mask.
And again, if you look back on our Mechanical Home Ventilation Guidelines, it’s the same guidelines apply here that if someone is at home on a BIPAP machine, but they need intensive care and assist 24-hours a day to make that possible, to keep them out of ICU and manage them similarly to an ICU patient. But obviously in a much nicer environment in a home care environment surrounded by their family, it’s such a better environment. And we know that all of it really at home is driven by the families, how do they want the routine being done. We try to get them involved in staff selection. We are working in collaboration with our clients to make it a win-win situation for everyone so that the clients can stay where they want to be, which is their home.
I just want to take a quick breather here and just want to find out if there are any questions so far, if you have any questions, you can type them into the chat pad. Or I’ll now give you phone numbers, you can also dial into the show if you like. I’ll give you the phone numbers now, and then you can dial in and we can answer your questions on the show. If you are in the U.S., you can call 415-915-0090. That is again for our U.S. audience, 415-915-0090. For our Australian viewers, you can call, 041-094-2230, 041-094-2230, if you’re in Australia. And in the U.K., 0118-324-3018, 0118-324-3018.
Coming back to how you can live at home on a ventilator? So, I’ve broken it down to if you have tracheostomy and the ventilator. And I’ve also broken it down, if you need BIPAP or CPAP at home. Often when patients are at home on BIPAP or on CPAP, they also have other medical needs such as seizure management, they might have type 2 respiratory failure, they might have asthma or COPD (Chronic obstructive pulmonary disease). And we need to manage that together with the medical team, with the care plan, with medications that are being given, with all the equipment that is needed. And again, with a 24-hour nursing care roster, making sure that it’s a safe process going, a safe transfer going from ICU to a home care environment.
And again, it all comes back to the home mechanical ventilation guidelines that are linked below when we publish this video. Now also, we have a lot of inquiries where families say, “Hey, my family member has been in intensive care for three days. They’re on a breathing tube, can I take them home?” Now, as much as we would like to do that, it wouldn’t be the right time to take someone home, unless it’s for a clearly end-of-life care. But it’s often, probably too early, after two days in ICU, three days in ICU to see what the next steps are. It needs a little bit of time, and we also need a little bit of time to get ready to take patients home.
“Can you live at home on a breathing tube, on a ventilator only for a very short period of time?” You can live at home on a ventilator with a tracheostomy for a very long time. The simple reason is this, a breathing tube can only stay in for two weeks, 14 days max. And then if someone can’t come off the ventilator for whatever reason then, you need to look at doing a tracheostomy. So, taking someone home on a breathing tube is very risky because if the breathing tube came out, for example, we wouldn’t have the skills and the resources to do a re-intubation at home. Whereas if the tracheostomy came out, that can be reinserted very quickly, and we are trained and competent to do so. Not so much with the breathing tube, it needs an intensive care specialist, they’re 24-hours a day. And a breathing tube also requires an induced coma or sedation. Whereas tracheostomy generally speaking, doesn’t require an induced coma and sedation.
So, you want to have your loved ones at home being awake. Whereas with a breathing tube, a breathing tube in the throat is so uncomfortable that it needs sedation and the induced coma. Therefore, it’s very difficult to make that happen at home. Now, there is one exception to that rule. There is one situation where people can go home on a breathing tube. We have basically provided end-of-life care at home for patients with a breathing tube. And that is predominantly for a “one-way extubation.” What do I mean by that? So sometimes in ICU, patients are end-of-life, and they might have a breathing tube. And for whatever reason, it’s being decided that the only way forward is to take the breathing tube out and let patients approach their end-of-life by taking the breathing tube out.
And a lot of families in ICU think, “Well, we can accept that because we think that is what’s happening here.” But we don’t want that to happen in a hospital, can’t we have that at home? So yes, that is the exception to the rule, we have provided end-of-life care at home for patients with a breathing tube or endotracheal tube, where we take them home. We take the breathing tube out at home, and then we can let patients approach the end-of-life at home. We have palliative care involved. We make sure that patients are comfortable, that pain is well controlled, that they are sedated well enough and so forth. So that’s how we do this at home. That is the exception to the rule. And that’s what we can provide in this situation. But Intensive Care at Home predominantly is for long-term ventilated patients with a tracheostomy because you’ve got a safe airway.
Okay. So, Helene, nice to see you again, you’re asking how often does the inner cannula need to be replaced? “When late mom was in LTAC, facility did not have the cannula, therefore respiratory tech sanitized the cannula.” Okay, great question, Helene and very topical. So, interestingly enough, some of our clients at home have an inner cannula and some of them don’t. Most pediatric clients do not have an inner cannula. Some adult clients do have an inner cannula, and then we need to change it. But again, some of our clients don’t have inner cannulas. So, if they don’t have an inner cannula, it’s very important that they get regular nebulizers, regular suction, and that the nursing staff inspect that cannula regularly so that there are no blockages. If you have an inner cannula like the case with your mom, Helene, it needs to be changed, I’d say, once a shift, every eight hours at a minimum.
I have seen clients where it needs to be changed every four hours. Let’s just quickly make the distinction when to use an inner cannula and when not to use an inner cannula. So, some of our clients that don’t have an inner cannula don’t have a lot of secretions. Let’s just put it that way. The clients that have an inner cannula, generally speaking, have a lot of secretions. And if you have a lot of secretions, chances that the cannula or the tracheostomy blocks are much higher, which is why you need to change it more frequently. If someone without inner cannula had a lot of secretions, the risk of the tracheostomy blocking is much higher than with an inner canula, assuming you’re changing it quite frequently and every four to eight hours, but a lot of it really depends. The way to assess that, Helene, is really you take out the inner cannula, you have a look, and you actually see whether it’s soiled and you actually see, if you look through the cannula, and see whether it’s narrow and whether it needs to be changed or not. That’s the way to assess it.
And once you get to know a client, you also know what the likelihood of the inner cannula needing to be changed three, four, five times a day. You get into the habit of it and because you know a client’s routine. So, I hope that answers your question. It’s for pediatrics as well, they don’t have inner cannula because their tracheostomies are too small. So, it’s predominantly for adults where inner cannulas are used, and most adults actually have an inner canula. There’s the rare exception where they don’t have an inner cannula. I hope that answers your question. But in both cases, whether you have an inner cannula or you don’t have an inner cannula, nebulization is really important, humidified air or humidified oxygen is very important to not have secretions dry up in the first place.
The worst thing that can happen really, and that doesn’t matter whether it’s at home or in an ICU, is that the tracheostomy blocks. That is the worst-case scenario, and you need to avoid that at all cost. And that’s what you do with nebulizers. That’s what you do with humidified oxygen or humidified air. And that’s what you do with inner cannula changes. Other options, for example, for someone without an inner cannula is, and we have one client where I can actually give a very good example is, to use a cough assist machine because that’s putting a lot of pressure down the lungs. May also clean the tracheostomy a little bit.
And what also happens is some of our clients or one client, I should say, doesn’t have a blocked cannula, which is very unusual for an adult. The cannula, the tracheostomy tube is not blocked. And then a lot of secretions actually run down the nose simply because there is no blockage, the secretions can also blow up the nose and then down the nose. And that also makes it less likely that the tracheostomy tube is blocking because less secretions accumulate in the tracheostomy tube. Okay. So, I hope that clarifies that. If you want to call in Helene, sure, at 415-915-0090. That is again 415-915-0090. You can call in if you like. So, I should also talk about a couple of case studies. Well, we have a lot of case studies, but so that I can illustrate what it means for someone to live at home on a ventilator.
So, for example, we have some motor neurone disease clients at home. Motor neurone disease is a progressive neuromuscular disease. And then there are two of our clients that live at home on a ventilator with a tracheostomy. And they came home after very long ICU stays until we had set up Intensive Care at Home until the funding was organized. And now they both have been at home for, I think coming close to three years now. And they live surrounded by their families, they’re both very young. Motor neurone disease is something that often happens very young in people’s lives, in their 30s or 40s.
Patrik: Hi Helene, how are you?
Helene: I’m okay, Patrik, how are you?
Patrik: Very well, thank you. Thank you for calling into the live stream. I appreciate that.
Helene: Oh, you’re welcome. Excuse me, one moment.
Helene: Okay. You had made a comment about that there could be drainage out of the nose-
Helene: … or mouth and you said that can happen when now?
Patrik: Predominantly for clients of patients that don’t have a blocked cannula.
Helene: Got you. Okay. Well, let me ask you this, because that happened to my mom when she was at home. And at that point, she was off the ventilator. She was at home. She was breathing pretty much 98 to a 100% on room air. Remember her O2 stats was around 98 to 100. However, I remember, well, there was two things going on, but one morning I awakened, and I found that she had on this drainage that came out of her nose. It came out of her nose and in her mouth. Remember I shared it with you she had a BIPAP machine injury where they had her on the BIPAP machine beyond the necessary need. And it caused her salivary gland to become overactive. So, it was pouring out like water.
Patrik: Right. Well-
Helene: So, I hear. Pardon me.
Patrik: Yeah. No, I’m just acknowledging what you’re saying.
Helene: Yeah. Okay. And they prescribed her fentanyl patches that was to be changed every 72 hours, but they never told me that it was addictive. It was opiate. They lied about that to me because you shared with me there’s another option to dry up the saliva-
Patrik: There is.
Helene: … when it’s overactive.
Patrik: There is. So let me ask you two questions. And I’ll come to what can be used to dry up saliva. It needs more explanation than just drying up saliva. But let me ask you this, did your mom not have a blocked cannula? Do you know?
Helene: When she was at home, no, because even when she was on LVAD (Left Ventricular Assist Device), she was already on a T-piece. When she was at the hospital, the pulmonary doctors in the hospital they were trying to cover up their malfeasance malpractice. And she suffered a brain injury. And as a matter of fact, they gave her so much drugs. It caused her to suffer. I called it hypoxia encephalopathy but there’s one that is induced by too many narcotics. I can’t remember the name and I have the notebook put it in my briefcase, so I don’t want to run away and get off the call to do that.
Patrik: Sure. But I mean, that’s not the first time that someone is… You’re basically describing an overdose from opiates. Is that what you are describing?
Helene: Oh yeah, opiate.
Patrik: Right. Right.
Helene: Yeah. Like I said, my mother was forced on the ventilator. Give me one minute. Let me see if I can get my notebook.
Patrik: Right. Okay. While we’re waiting for Helene, I’ll just keep talking in the meantime.
Helene: Give me a moment. It was quite toxic, metabolism encephalopathy. Does that make sense to you? Does that ring a bell?
Patrik: No. Yeah, not necessarily in combination with an opiate overdose. It could be, but I probably would need to know more, but look, an opiate-
Helene: They were giving her overdoses of antibiotics, overdoses of clonazepam. They were even giving her propofol under false pretenses to get her on the bed because they were covering up malpractice, injury that happened on the BIPAP machines where I told you she chewed off a piece of the mask and it was blown down her throat and cut her esophagus, which caused an infection, septic shock.
And then they tried to, what do you call it? Discharge her abruptly. And it was an unsafe discharge, but I refused to take her out because I saw her physical deterioration and she was very lethargic. They were trying to send her home so they would not be liable. But the name of the… It’s something called… I’m going to spell it out for you. Another word I found was M-I-T-O-C-H-O-N-D-R-I-A. And it says if damages then recognized as a cause from the side effects of a critical-
Patrik: Some mitochondrial damage by the sounds of things, which is often a neuromuscular thing but it’s very detailed. It’s more of a question for a doctor than for me in this situation, but-
Helene: Yeah. But I’m just saying that was one of the things I believe that happened because I mean, the thing is for her to have been given fentanyl on the false pretenses and it was the wrong medicine, there was no way she was going to get weaned off of fentanyl. I mean, young people have a hard time getting weaned off of fentanyl, who I mean-
Patrik: Fentanyl should only be given in the short-term for, if someone comes into ICU needs to go into a coma, has a lot of pain. It’s more for the short-term. It should not be used for the long-term, ideally. But I know there are people on fentanyl long-term as well, unfortunately.
Helene: Well, the thing is, that’s the whole point. They never educated me on it either. They sent her home, I mean, I asked, “How long she’ll be on fentanyl?” “Oh, we’ll let her primary care doctor make that decision.” So, I was always kept in the dark, which put me at a high risk to be negligent, but fortunately, I wasn’t because I was very intent to my mom and when something was off, I was definitely advocating to get out for her. It’s already stressful enough being a full-time caregiver and I didn’t have anyone helping me with my mom. I had to do it 24/7 with God’s grace and learn to because I surely wasn’t equipped, but that’s the other part that really bothers me, that not only do some pulmonologist or primary care doctors in ICU withhold information from you, they don’t even prepare you. Well, they didn’t prepare me for what was to come with my mom.
Patrik: And nobody-
Helene: I had to figure it out for myself.
Patrik: Nobody will prepare you for what’s to come. And that’s why I keep saying the biggest challenge for families in intensive case is that they don’t know what they don’t know. It’s very hard to predict. And it really comes down to asking the right question in the first place. And that’s very difficult of course. Now-
Helene: If you don’t know what questions to ask-
Patrik: That’s right.
Helene: How can you ask the right questions? When mom first went on a ventilator and it was also induced, it was caused, it was like malfeasance malpractice in 2012, I don’t think you came in into play until 20. Was it? 20-
Helene: 13, I think.
Patrik: 2013. I started going online.
Helene: Yeah. And then in 2016, I didn’t even know about you. And that’s the other thing, I mean, a lot of people don’t even know how to find you, your company.
Patrik: Yeah, no, for sure.
Helene: That’s the part… I mean.
Patrik: For sure. It’s getting better and we have no shortage of work, Helene. We definitely have no shortage of work. Now I do want to come back to you. I’ve just got another question here in the chat pad that I quickly want to answer. Sorry.
Patrik: So Elfaraon83 is asking, “Hello, my father died on a ventilator from a cardiac arrest. Is that common?” That’s a very broad question. People die in intensive care on a ventilator from cardiac arrest, but I should also mention to you that only about 10% of patients in ICU do not survive. So, 90% of patients do survive roughly.
So, people die on ventilators with cardiac arrest, but I would need to know more to really understand what was happening, what led to it, why was your dad in ICU in the first place? So, I wouldn’t say it’s common. I looked after thousands of patients in ICU, and I would say only a small minority of them have passed away on a cardiac arrest or he was in a nursing home.
Again, I would need to know more about what was his underlying condition before I can answer the question, but I can tell you, it is not common that patients die with a cardiac arrest on a ventilator. It’s not common. That much I can answer you. Sorry, Helene, so I just had to answer this.
Helene: No problem.
Helene: Let me ask you one thing really quickly. My original question was the drainage.
Patrik: Yes. Yeah.
Helene: There was so much drainage on her pillow. I mean, it was soaking wet. And my question, I was wondering, did it come from the excessive fluid overload? If they give somebody excessive fluid overload and it could still be in their bodies, and they don’t urinate it all out, can it come back up through their esophagus? Or can it come up through their nostrils? I mean, how does all that fluid-
Patrik: How is it-
Helene: … come out of the body?
Patrik: Yeah. Great, great question. Great question. So, there’s a number of things there, Helene. On the one hand, yes, there needs to be a very tight fluid balance, need to watch what’s going in and what’s going out every 24 hours. Was your mother in kidney failure?
Helene: They were trying to induce it before. Thank God, she did not have kidney failure.
Helene: I mean, one thing I’ve learned, some illnesses are driven, which I mean, they’re inducing it because they make money. And see that’s what my mother was constantly being a victim of. It was driven because like I shared with you the last time we spoke, there were times they would order a hold on water for three days. And there was no reason to do that, but to induce her metabolism to get off track where she needed soft pills, or they totally discontinued water and gave her saline indefinitely in her PEG (Percutaneous Endoscopic Gastrostomy) tube, which is not even for human consumption.
I mean, so that’s where a lot of foul play was happening. For me, I love talking with you because it was so much done that was egregious and it was malfeasance to cause damage and harm. I have to take what I remember happening and bring it back to what should have happened. That’s why I asked you the question because it’s almost like brainwashing, like this is normal, but it’s not normal.
Patrik: No, it’s not normal. By the same token, Helene, a lot of patients in ICU look like they’re fluid overload simply because they’re immobile.
Helene: Well, she really was because I did advocate to be moved for physical therapy and all that. The hospital, well, they said the insurance company would not pay for it. So, what they were willing to do was let the physical therapist come in and show me how to do most range and motion exercises. And I also advocated for her bed to be put in a position like a chair so she could sit up, so it can expand her lungs so she could breathe better. And this was like God sensed because again, I don’t have a clinical background, but I knew it was logical.
Patrik: Helene, there’s probably-
Helene: Which is just common sense.
Patrik: Right. There’s probably more to it though. And I’ll tell you why there’s more to it.
Patrik: So, a lot of patients in ICU or in LTAC, they have low albumin. Albumin is a blood product. And if albumin is low, people are swelling up. That’s probably another reason why your mother was very swollen. I argue that eight out of 10 ICU patients have a low albumin and the combination of them being immobile end low albumin gets them to swell up. Next-
Helene: I can understand that but here’s the deal, I’ve witnessed them giving her the excessive fluid overload. I saw this as a pattern and to me it can look like she had been on congestive heart failure. Plus, I took, she was being seen by a cardiologist who documented and wrote a paper prescription for me to give to anybody. Whenever she went to the hospital that she only have edema or congestive heart failure, which when she’s in the hospital from excessive fluid overload, so that is factual.
Patrik: Yeah. No, no. Look, I’m sure it’s very factual. Now other question here, Helene, did your mother have heart failure?
Helene: Yes. Because of the excessive fluid overload.
Patrik: Right. Well, I guess it’s almost a chicken or-
Patrik: It’s almost a chicken or egg question. A lot of patients in ICU that have heart failure are also ending up with fluid overload.
Helene: Yeah. Because it’s congestive heart failure, that makes a lot of sense.
Patrik: Correct. Correct.
Helene: But that wasn’t the case with my mom. They were intentionally giving her excessive fluid overload to cause respiratory failure.
Patrik: I see.
Helene: That’s what I’m saying. My mother was treated like a commodity. They were making money off her. She was being medically exploited. And I saw this happening time and time again from 2012 to 2016, and many times I was able to stop it because I saw this was… Because I would ask, or if she’ll be dehydrated? And I asked, what was the numbers for somebody to be dehydrated? And at many times she was not.
Patrik: Right. Right. Okay.
Helene: And that’s why I’m saying she was forced onto ventilators. She was forced to have those procedures where they stick the needle into your lungs and drain that fluid off. I saw this, nothing since malpractice that was manipulated. That’s why I stand so strong about what I’m saying because I saw the pattern.
Patrik: Yeah, for sure, for sure.
Helene: And that’s why, I had to file a lawsuit in the federal courts versus the state because it shows, being that they’re inducing illnesses for profit, that is a felony, that’s an assault and battery.
Patrik: Right, right. Helene, I do have more questions in the chat pad that I want to get to.
Helene: I’ll hang up and I’ll listen. Thank you.
Patrik: Okay. Thank you so much. Thank you for your input. I really appreciate it. Thank you for sharing this.
Helene: You’re welcome.
Patrik: Thank you. Bye.
All right. Let’s get back to your questions in the chat pad. It was really nice for Helene to share what she’s been going through. So Elfaraon83 had a question earlier, whether it’s common for someone on a ventilator to have a cardiac arrest and pass away. And I said, it’s not common at all. I don’t know your dad’s clinical history, but so then you are saying “He had pain because of bed sores. They were heavy. They were heavy, pretty good, almost completely. Then the last three days of his life, he was breathing faster sometimes at 60 breaths per minute. I visit him every day for three hours and we did exercises every day because Medicare didn’t pay it.”
Okay. So, coming back to your original question, Elfaraon83, it’s not common for patients on ventilator to have a cardiac arrest. I mean, as we all know, our earthly lives are limited. At some point we’re all going to die. But it’s not common for someone on a ventilator to have a cardiac arrest, that much I can tell you. The question is, did he have a cardiac history? Was there anything wrong with his heart? Do you know? Also, probably would be interesting to know how old was your dad? How long was he on a ventilator to begin with? Those would all be questions that would help me to answer your question. It would be interesting to find out if you had any cardiac history specifically.And you’re saying last two days of his life, he was breathing faster. Sometimes at 60 breaths per minute. Was he in pain? Did they send him back to the hospital? What was the background? He’s saying, “Not that I know”. Okay. All right.
So, Jennifer has a question, “Any advice for someone weaning at home that seems mentally dependent on the ventilator, but physically clear to get off?” Great question, Jennifer. Great, great question. So, I would argue that a lot of patients, especially in ICU, not so much at home and I tell you why I think it’s not so much at home, but that they’re mentally dependent on the ventilator, but are physically clear to get off. There’s definitely a physical component on being on the ventilator and being dependent on it. So, I’ll give you some examples that I can illustrate that for you. So, when someone is in ICU or at home on a ventilator, and let’s just say, you take them off for a few minutes and they can’t cope. And all of a sudden, they feel like they can’t breathe. And that can be very traumatic for them. It can be very traumatic for them.
So, then you put them back on a ventilator, but they don’t want to repeat that traumatic experience because they might feel like they’re going to die, and that can be very, very traumatic. Then you might give them some sedation, something to calm them down. Then they might get mentally dependent on that. So, it’s almost like a vicious cycle that people need to get out of. On top of that, the trauma, the mental trauma they sustained in ICU, just of being there, being in an induced coma and so forth. You could also argue should anti-depressants being used. I do believe the best case is to start all over again, very slowly. Take someone off the ventilator for two minutes, maybe increase then to four minutes, then increase then to eight minutes. I do believe that is the best approach. It’s also important that they are in a regular day and night rhythm, that they can sleep at night and be active during the day.
Okay. So, then Jennifer, you’re adding on, “Dad doesn’t know whether he’s in AC (Assist Control) or SIMV (Synchronized Intermittent Mandatory Ventilation). He hates CPAP. He’s oxygenating at 96 or above and says he can’t breathe.” Okay. Can you give me a little bit more detail there, Jennifer? Why is your dad on a ventilator? How long has he been on a ventilator for? Can you share some insights there and also, is your dad at home already or is he still in the hospital? “If you can, he’s got hypercapnia”. Sure. I can get that. And that’s why he hates CPAP. That makes sense. Why is he on a ventilator? “Put on June 2021”, but why? Just the hypercapnia? I wouldn’t think so. There must be more to it. “Home since October.” Okay. And why is he on the ventilator in the first place? Is it COVID? What led him… “COPD.” Okay. So, he’s got COPD. Okay. And he doesn’t like CPAP. Okay.
I can tell you straight away that with COPD (chronic obstructive pulmonary disease), you might want to try BIPAP instead. And the reason you want to try BIPAP instead is simply for someone with COPD, you’re having a high CO2 or a carbon dioxide. High carbon dioxide, you can better eliminate with BIPAP than with CPAP. If the CO2 can’t be eliminated, your dad might get confused, agitated, and that might just exacerbate the mental dependency on the ventilator.
Jennifer, you’re saying your dad was originally diagnosed with COPD then a month later, 911 to hospital, unresponsive with 88 CO2 per ABG (arterial blood gas). So, at that stage, Jennifer, did he have a tracheostomy already at that stage when his CO2 was 88 and you had to call 911? Did he have a trach already? In any case whether he had a tracheostomy or no tracheostomy, “Not yet.” Yeah. Okay. I would argue you’ve got to try BIPAP. Because that will help you eliminate the CO2 most likely.
So, if he’s on CPAP and even with the SIMV (Synchronized Intermittent Mandatory Ventilation), if he is in an SIMV mode, you probably have to look at what’s the rate also important. Is he in a volume control mode or in a pressure control mode while’s he in SIMV? So maybe try BIPAP but try BIPAP with the same rate than SIMV. If he’s getting a rate of 15 breaths per minute, for example, with SIMV, PEEP 5 and rate of 8. A rate of 8 for someone with COPD, I argue is too low, it’s too low. Try BIPAP with a rate. I don’t know who manages your ventilation settings, bear in mind. I’m an intensive care nurse, I’m not a doctor. But I’m talking from experience here, I’m not talking because I’ve prescribed anything. I’m not qualified to prescribe ventilation settings, but I am telling you from experience that for someone with COPD with a high CO2, and you might try BIPAP mode, PEEP of 8, pressure support of 15, and maybe a rate of 15 breaths per minute and see what happens.
And I don’t know where you are. It sounds to me like you’re in the U.S., Jennifer. But if you are in Australia, we should definitely talk about helping your dad at home. But it sounds to me you’re talking about 911. I would think that you are in the U.S. But if you’re in Australia, I would definitely like to talk to you because I’m certain… Yeah, you’re in the U.S. That’s okay. That’s okay. I hope I can still help you with this. So that would be my advice. And Jennifer, does your dad have a lot of hospital admissions? Or have you been able to keep him at home so far? Look, Jennifer, we’re probably halfway there to get the program to the states. Look, the limitations for us at the moment are, we are so busy here, we can barely keep up here. And it’s also, we need to invest some money to go to the U.S. And we need to find the right location to start out in the U.S. We have inquiries from all over the country, but we have more inquiries from some locations than others.
“Since December, he’s been home and doing well.” That’s great. That’s great. That’s fantastic. That’s fantastic. So, it’s definitely possible to live at home on a ventilator with a tracheostomy, but it takes work. It’s ongoing, it’s nonstop, and you definitely need to know what you’re doing, and you need to have the right support structure in place to make it happen. So, I hope that Jennifer… Oh yeah. So, “November the 2nd, 911 calls mucous issues, LTAC sent him home with an infection without telling us.” Right. Well, I would hope Jennifer that at home he’s infection free because you’re in a much cleaner environment. At home is a much cleaner environment. Oh, it’s a pleasure. It’s a pleasure, Jennifer. Always happy to help wherever I can.
Okay. I think we’ve been going for an hour now. And if there are any more questions, please type them into the chat pad now, otherwise I do want to wrap up in a minute. Any final questions I will take.
I will do another YouTube live stream again next week, around the same time, 8:30 PM on a Saturday Eastern Standard Time, 10:30 AM on a Sunday, Sydney, Melbourne time.
Jennifer, you’re saying, “I’m really strict on tracheostomy care of which he didn’t get much in LTAC.” No surprises there, no surprises there. Unfortunately, LTACs are just better version of a nursing home. Maybe that brings me back to our question from Elfaraon83, you’re asking, “Is it common that people die on a ventilator with cardiac arrest?” Not at all. But you also mentioned that your dad was in a nursing home.
Nursing home is one level down from LTAC. LTAC is pretty bad. Now you’re telling me your dad is in a nursing home. I wouldn’t be surprised if simply they didn’t know what they’re doing there. You can’t have lay people looking after someone on a ventilator, you just can’t. That’s why I mentioned earlier, the mechanical home ventilation guidelines. That’s the only safe way to look after someone at home on a ventilator or in a nursing home for that matter. You’re saying, Jennifer, “They rarely changed things. It was a nightmare.” Yeah, no surprises there. No surprises there. So yeah, look, I do want to wrap this up.
So yes, next week, same time, Saturday night. US 8:30 PM, Eastern Standard Time, 5:30 PM Pacific Time, 10:30 AM on a Sunday Melbourne time, Sydney time here in Australia. Unfortunately, it’s in the middle of the night in the UK, but the live stream here will be uploaded, and you can watch it retrospectively.
Jennifer, you’re saying, “If I can help get your program here, please let me know. I respect you and your health expertise.” It’s not so much that we could start in the U.S. pretty quickly, it’s a matter of having some manpower, female power, which whatever you want to call it. And the physical presence, that’s our next step.
Go and check out intensivecareathome.com for more information.
Also check out intensivecarehotline.com where we advocate and consult families in intensive care. And I also offer one-to-one consulting and advocacy for families in intensive care. Again, I’ll put a link below this video.
I want to thank you for all your support.
Share this video with your friends and families, subscribe to my YouTube channel for regular updates and regular live streams for families in intensive care and Intensive Care at Home, click the notification bell.
Also, check out our membership for families in intensive care at intensivecaresupport.org. We also offer medical record reviews for families in intensive care. Again, we’ll put a link below this video.
Thank you so much again for watching this video.
I wish you all a wonderful weekend and I’ll talk to you next week.
Take care. Thank you.
If you have a loved one in intensive care, you should be contacting us 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].
Also have a look at our case studies because there, we highlight more about what we can do for our clients, how clients can live at home with ventilation and tracheostomies instead of in intensive care. And you can look at our case studies.
Intensive care at home Case studies
And if you are at home already, and you need support for your loved one, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of the above.
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This is Patrik Hutzel from Intensive Care at Home and I’ll talk to you in a few days.