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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,
HOW LONG IS A PATIENT WITH A TRACHEOSTOMY GOING TO LIVE IN THE COMMUNITY? LIVE STREAM!
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
Does a tracheostomy reduce life expectancy?
Hello. Good morning, good evening, good afternoon, wherever you are. Welcome to another live stream of Intensive Care at Home and intensivecarehotline.com.
Today’s live stream is about, “Does a tracheostomy reduce life expectancy?” It’s a question we get quite frequently, which is why I thought we needed to bring it up here in a live stream to get all your questions answered.
Now, also want to welcome our viewers that watch this video on replay or listen to the podcast. Once again, thank you so much for your support and thank you so much for keeping the questions coming so I can make these videos and podcasts for you.
Now, before we go into today’s topic, just very briefly, what makes me qualified to talk about today’s topic. My name is Patrik Hutzel. I’m a critical care nurse by background. I have worked in critical care for over 20 years in three different countries where I also worked as a nurse unit manager for over five years. I am the founder and managing director of Intensive Care at Home, a specialized Intensive Care at Home service where we provide Intensive Care at Home for long-term ventilated adults and children with tracheostomies, but also for our adults and children customers for BIPAP (bilevel positive airway pressure) or CPAP (continuous positive airway pressure) ventilation, home TPN (total parenteral nutrition), home IV Fluids, home IV antibiotics, seizure management. Anyone that would otherwise be in a high acuity or intensive care unit in hospital long-term, we look after at home, therefore improving the quality of life or quality of end of life for our clients and their families. But we also improve the bed flow and the bed blocks in ICU. We improve them and also as a byproduct, we save the hospital system approximately 50% of the cost of an intensive care bed.
Now, I am also the founder and managing director of intensivecarehotline.com where we have consulted and advocated for families in intensive care all over the world since 2013. We have saved lives with our advocacy for families in intensive care by bringing the advocacy of course, but also by providing second opinions, by providing alternative opinions that are evidence-based, of course, and simply by helping families in intensive care to navigate what is a very complex system. So, that’s a little bit about me.
Now, if you have questions, please type them into the chat pad. If you’re watching this on replay and you have questions, you can, again, type them underneath the video and I will make another video about it and answering your question. Or I would answer them here on the YouTube live stream. Or you can also go to intensivecareathome.com and contact us there with any questions. You can email us either to [email protected], or you can email us to [email protected].
Without further ado, let’s look at, “Does a tracheostomy reduced life expectancy?” Now, some of you might be aware of ChatGPT by now. ChatGPT is AI, artificial intelligence, and apparently ChatGPT can answer any questions much better than any human does. But I’ve typed this question into ChatGPT, “Does a tracheostomy reduce life expectancy?” and here is what AI or ChatGPT is saying, and I’m reading this out.
“A tracheostomy itself doesn’t necessarily reduce life expectancy. It is a medical procedure that involves creating an opening in the neck to provide an alternative airway, often used in cases of severe respiratory or airway problems. The impact on life expectancy depends on the underlying medical condition that necessitated the tracheostomy and the overall health of the individual. Some people may have tracheostomies as a temporary measure and eventually have it reversed while others may rely on it long-term. It is important to discuss these specific circumstances with the healthcare professional for a more accurate assessment of the individual’s life expectancy.”
Look, I do believe this is a good summary of what ChatGPT is offering, but it’s a very basic summary. It’s very broad and it doesn’t go down into the nitty-gritty when it comes to, (A), when should a tracheostomy be done? (B), when can it be removed? What’s the goal of a tracheostomy?
Over the last few weeks in my YouTube live streams here, I’ve done a series of videos talking about some of the aspects of a tracheostomy, and I’ll read out some of the titles of the YouTube live because they’re good for you to get back to.
So, I started a couple of months ago with, “What are the long-term effects from a tracheostomy besides being alive?” Then I did another YouTube live, “Why is there a negative impression of a tracheostomy?” Then another question that I answered on one of these live streams was, “Can you live a long life with a tracheostomy?” I also did a YouTube live, “What is the purpose of a tracheostomy?” I did a YouTube live, “Is a tracheostomy going to work?” I did another YouTube live, “Will a tracheostomy work in the community?” Then, I did another YouTube live, “Will a tracheostomy and ventilation work in the community?” So, I’ve covered this topic in various forms already, but today is really about the reduction or what I would say rather the extension of life expectancy. But it is a question that comes to us quite frequently, which is why I wanted to address it today.
So, first off, generally speaking, a tracheostomy improves life expectancy. However, that doesn’t mean everyone should have a tracheostomy. A tracheostomy should only be done if someone can’t be weaned off a ventilator in intensive care, if they’re on a ventilator with a breathing tube and they can’t be weaned off that ventilator beyond the shadow of a doubt.
How do you find out, as a family member having a loved one in intensive care, if intensive care teams come to you and say, “Hey, your loved one needs a tracheostomy.” Well, your first question should be, “Well, have you tried to get my loved one off the ventilator and the breathing tube and avoid the tracheostomy?” Then, you’ve got to listen carefully what they say, and then you’ve got to get a second opinion because I have written an article a few years ago saying, “How to wean a critically ill patient off the ventilator and the breathing tube?” and it’s a step-by-step article, “How to wean someone off the breathing tube and the ventilator?”
If the step-by-step process has been followed and your loved one still can’t be weaned off the ventilator, then tracheostomy is almost inevitable. But again, the devil is in the detail in those situations, what sedation has been used? What opiates have been used? How much of it has been used? For how many days has it been switched off early enough? If it hasn’t been switched off early enough, why hasn’t it been switched off early enough? The sooner you can get someone off sedation and opiates, the higher chances you get them off the ventilator and the breathing tube and avoid a tracheostomy.
Now, there are of course, situations where sedation and opiates have been reduced or completely eliminated, and yet someone can’t be weaned off the ventilator. That is mainly the case for clients with neurological conditions such as motor neuron disease, cerebral palsy sometimes, spinal injuries, C1, C2, C3 spinal injuries, spinal muscular atrophy. There could be Duchenne syndrome, there could be those conditions where tracheostomy is inevitable. Guillain-Barre syndrome is another one where tracheostomy is often can’t be avoided. But there could be other conditions as well, such as respiratory conditions, pneumonia, COPD (Chronic Obstructive Pulmonary Disease) asthma, where sedation has been switched off early enough and all the right things have been done and yet a critically ill patient can’t be weaned off the ventilator, making a tracheostomy inevitable. So, I hope that sets the scene a little bit.
Then if, God forbid, a tracheostomy is unavoidable, then you need to look at is it temporary? What’s the goal? It all comes back to the goals of care. Sometimes we have clients come to us and they say, “My mom, my dad doesn’t want to be hooked up to machines. They don’t want all these bells and whistles and fancy equipment and whatnot.” Well, the reality is a tracheostomy can be a vehicle and can be something to keep your loved one alive. Then, the tracheostomy can be removed in a few weeks, few months’ time, sometimes in a few days’ time. So, it’s not a one size fits all approach. It very much comes down to the individual’s circumstances.
Take brain injuries in intensive care where someone isn’t waking up quickly and they might be able to be weaned off the ventilator, but they still need a tracheostomy because with brain injuries such as stroke, seizures, again, maybe Guillain-Barre syndrome, motor neurone disease, spinal injuries, even if there are spontaneous breathing efforts that is compatible with life and people can adequately breathe. They sometimes can’t swallow. They sometimes can’t clear their airway. They sometimes need regular airway clearance, i.e., suction through the tracheostomy.
I also want to quickly show what a tracheostomy looks like. This is what a tracheostomy looks like. Once it’s in, you can inflate the balloon so that it stays in place. Here, through this entry, there’s a guide wire in there, just take it out. That’s where the suction often is taking place through this hole here where the suction catheter is getting inserted and airway clearance is taking place.
So next, the goal is to prolong life. Again, it’s not a one size fits all. How can you prolong life with a tracheostomy? Well, (A), if someone can’t be weaned off the ventilator and the breathing tube, one thing that is clear is once a tracheostomy has been done, then sedation and opiates, generally speaking, can be removed completely because the tracheostomy is as not as uncomfortable as a breathing tube. But again, it should not only be done for patient comfort, it should be done only if your loved one can’t be weaned off the ventilator beyond the shadow of a doubt. That’s the only time tracheostomy should be done.
Then, once again, the goal should be once a tracheostomy has been done, take away sedation, take away opiates, let your loved one wake up, and then wean them off the ventilator as quickly as possible. Once they wean off the ventilator, get rid of the tracheostomy as well. So, you can see it doesn’t reduce life expectancy at all in this situation. There are other situations where someone after a brain injury, whether it’s a hypoxic brain injury, whether it’s a traumatic brain injury where critically ill patients need the tracheostomy, not so much for ventilation, they need it for airway protection, i.e., if they can’t swallow, they’re at risk of aspiration.
So, what that means is, let’s go to get back to our tracheostomy here, they may not be necessarily ventilated, but that cuff needs to be up. As you can see, I’m just inflating the cuff here, and that prevents aspiration because mucus can’t go down into the lungs. If mucus secretions or gastric content travels down into the lungs because someone doesn’t have a tracheostomy and they can’t swallow, that’s a risk of aspiration. Therefore, if they’re aspirating and ending up with an aspiration pneumonia, they could die potentially from that. So again, in this instance, tracheostomy doesn’t reduce life expectancy. If anything, it prolongs life expectancy.
Next, if someone has reduced ability to cough, if their cough is not strong enough or they can’t cough at all for whatever reason, once again, that might be the case in motor neurone disease, cerebral palsy, or spinal injuries, especially C1, C2, C3 spinal injuries, they can’t cough and they can’t breathe. So, they definitely need a tracheostomy. They often also need a cough assists device. Cough assist means cough assist device gets connected to the tracheostomy, gets connected here at the tip of the tracheostomy, inflates a positive PEEP, high positive pressure, and then triggers a negative PEEP, negative pressure into the lungs, and it makes patients cough. That can be done non-invasively as well, like with a BIPAP or CPAP mask, but especially for patients with a tracheostomy, cough assist device needs to be connected to the tracheostomy and clear the airway that way. So once again, in a situation like that that I just explained, or in the situations that I just explained, tracheostomy expands life expectancy. It doesn’t diminish life expectancy, not at all.
Other situations that I’ve seen over the years is, for example, if someone has had a successful lung transplant after they might have lived a few years, they might come point where the lung, the donor lung is rejected and often patients end up in ICU again ending up with a tracheostomy once again. Not reducing life expectancy, but improving life expectancy because people potentially get a second lung transplant if they’re lucky or other remedies can be found, other treatment can be found.
So, it inevitably then leads to the next question, how long should a tracheostomy stay in? Once again, it depends, for as long as necessary for as short as possible, that’s the answer. Most patients that end up with a tracheostomy only need it temporarily, and that’s a very good thing, and some patients need it for the rest of their lives, i.e., again, C1, C2, C3 spinal injuries, patients with motor neurone disease or muscular dystrophy, some cerebral palsy patients. So, it really depends. It’s not a one size fits all, but for most patients in ICU, this should be temporary.
Now, God forbid, if someone can’t be weaned off the ventilator, then once again, you should be looking for our Intensive Care at Home service and have weaning done at home or have treatment continued at home, because you certainly don’t want to be stuck in ICU for very long times. You should then be looking at going home as quickly as possible.
Also from an ICU perspective, if you’re watching this and you are an intensive care consultant or you’re an intensive care nurse or a nurse manager or a hospital executive, clearly you don’t want those long-term patients be stuck in intensive care long-term. On top of that, it costs, like I said, five to $6,000 per bed day to keep someone in intensive care and with no quality of life.
Coming back to what I said a minute ago where I said some patients say, “I never want to be hooked up to machines. I never want to live on a ventilator,” and blah, blah, blah. Look, that’s your right to not wanting any of that, of course, but the reality is that tracheostomy is also a vehicle to get patients to the other side, to get them to improve their quality of life. If that means you need to be on a ventilator with a tracheostomy for a period of time in ICU to get to the other side, the question needs to be raised, is it worth going through that? I can’t answer that question for you. I’ve seen it many, many times and most patients are very happy to be alive. That’s just a thought for you to think about it.
Now, are there a situation where a tracheostomy does really reduce life expectancy? I don’t really think so, with very, very, very, very few exceptions. Let’s just say a tracheostomy procedure doesn’t go right, whether it’s a percutaneous tracheostomy done in ICU at the bedside, or whether it’s a surgical tracheostomy being done in the operating theatre or operating room. Yes, then, of course, it would reduce life expectancy, but that’s never the goal. The goal is always to improve life expectancy.
Coming back to brain injuries, and here is another example. Again, you might have someone in ICU with a brain injury, whether that’s a traumatic brain injury or whether it’s an acquired brain injury such as a hypoxic brain injury. So, in those situations, patients are not waking up. In those situations, you can’t keep patients on and tracheostomy on the ventilator and the breathing tube for more than two weeks.
Then, if patients are not waking up, they’re off sedation, they’re off opiates, they should be waking up, but they’re not waking up because they’re having a brain injury, once again, either a traumatic brain injury or an acquired brain injury/stroke, hypoxic brain injury, then a tracheostomy definitely doesn’t reduce life expectancy. If anything, it will improve life expectancy. So, it gives people a second chance. It gives people a chance and time to recover, and it also gives people a chance to go home, once again, with our service Intensive Care at Home.
One of the issues with the tracheostomy, and I’ve talked about this on other countless videos, you can’t just send a patient with a tracheostomy onto a hospital ward unless they continue with one-to-one specialist nursing. So yes, someone might be weaned off the ventilator and they then might be ready to go to a hospital ward in theory, but that’s not what’s happening really because you still need nurses with ICU experience looking after a tracheostomy, countless of patients with a tracheostomy on the ward have died. Because they didn’t have the specialist nurses around or they bounced back into ICU because medical emergencies couldn’t be managed on a hospital ward because it is a rare skill of nurses to look after tracheostomy safely. It’s really an intensive care nursing skill or a critical care nursing skill.
I’ll tell you when a tracheostomy actually does reduce life expectancy. If you’re sending a patient with a tracheostomy in the wrong environment, it absolutely reduces life expectancy. That’s what I mean. If someone from ICU goes to a hospital ward, hospital floor where the nursing staff are not tracheostomy competent, yes, that will definitely reduce life expectancy. If some patients go home from ICU to a home care environment without critical care nurses, yes, that reduces life expectancy.
I have evidence for what I’m saying here. I know of patients in hospitals that have died or have taken massive steps back, medical negligence and all of that where patients didn’t have the one-to-one ICU nurse on a hospital floor and ward nurses or floor nurses, general nurses couldn’t manage medical emergencies with tracheostomies.
The same is applicable in the community. We have evidence for tracheostomy patients having died in the community because either parents or family members or disability support workers or even general registered nurses/enrolled nurses could not manage medical emergencies with a tracheostomy. You need to have worked in ICU for at least two years to be competent with medical emergencies with tracheostomies, knowing how to troubleshoot them, knowing what to do in an emergency because if those emergencies happen, you only have three minutes. You need to know what to do very, very, very, very quickly. Otherwise, patients can die. Once again, I have seen that.
If you look on our website at intensivecareathome.com, when you look at the section on our website, the Mechanical Home Ventilation Guidelines, which are evidence-based, you will see that the only way, safe way that patient in the community can be looked after with a tracheostomy or with a ventilator and a tracheostomy, even with non-invasive ventilation, is with 24-hour critical care nurses with a minimum of two years critical care nursing experience. Makes perfect sense. If you have a new nurse starting in ICU, you wouldn’t give them a patient with a tracheostomy. They have to go and meet certain competencies, certain education. So, it’s the same in the community. You can only have someone in the community safely with critical care nurses, 24 hours a day, so that they can safely lead critical care.
Now, other situations where a tracheostomy can be used, and we’ve done that too with Intensive Care at Home, I’ve also seen it in ICU, sometimes patients can’t improve. They can’t improve for whatever reason, but there’s still time to prolong their life. Then a tracheostomy is also a vehicle to prolong life. It might not be for many months, it might not be for many years, but it might be for a few more weeks. It might be very important for a particular patient. It might be very important for a particular family to have that time with their loved ones, and it’s also then a vehicle to go home, again, with our service Intensive Care at Home. Then it doesn’t reduce life expectancy. It prolongs life expectancy, and it improves life expectancy.
Once again, what is important when your loved one is potentially approaching end of life? Do you want to have that happen quick? Do you want to have that happen at home? Can it only be done if your loved one has a tracheostomy? Those questions are all important to ask. End of life is not a one size fits all. It’s a very unique and individual approach where you and your family want to have a say in as well. You just don’t want to have the hospital tell you how to approach end of life for you and your family. But we have these all the time.
We have these inquiries all the time where families say, “Tomorrow at three o’clock, the ICU told us they’re going to withdraw life support. My loved one’s going to die, but I’m not happy with it.” You should not be happy with that. You want to have a say. That sounds like it’s almost like an execution lined up for 3:00 PM. It sounds horrible, but I’ve seen those situations unfortunately, and you’ve got to stand your ground. The ICU has no right to do that. Absolutely no right to do that. So, if you need more information around withdrawal of treatment, you should contact us as well.
So, bear in mind also that when a tracheostomy is being done in ICU, just to illustrate more of the environment and to illustrate more of the moving pieces, it means that if you give consent to a tracheostomy for your loved one in ICU, that your loved one might stay in ICU for quite some time. That’s often also a big decision for the ICU to make because ICUs run their beds on having a high patient turnover, high patient throughput, low average length of stay. The minute you consent for your loved one to have a tracheostomy, their length of stay is often literally going through the roof, extending from five days to five weeks, sometimes five months. It definitely shouldn’t be five months, especially with, again, our service intensivecareathome.com where we take long-term ventilated adults and children with tracheostomy home from ICU. We can do that within a few days really. It’s not a super remote location.
So, I hope that answers the question, “Does a tracheostomy reduce life expectancy?” I welcome you to type your questions into the chat pad. What I will do next now is I will answer some questions that have come in during the week. There’s a whole bunch of emails sitting in my inbox that I want to address now. In the meantime, please type your questions into the chat pad and I will answer them here whilst I’m looking for the emails that have come in during the week, and I will get to them in one moment.
I have just got to go to my emails and get up the first one from Babu. Babu says, “I need information on prognosis of hypoxic brain injury due to cardiac arrest.” Well, I actually think that ties right in with our topic today, “Does a tracheostomy reduced life expectancy?” I’ll connect the dots in a moment. Let’s just answer Babu’s question.
So, a lot of it depends, Babu, on how severe has been the hypoxic brain injury? Has it been secondary to a cardiac arrest? Has it been secondary to a stroke? What does the MRI scan of the brain show? What does the CT scan of the brain show? Has an EEG (electroencephalogram) been done? What are the neurologists saying about prognosis? I also presume that your loved one might be in ICU on a ventilator, and if they’re not waking up within the 10 to 14-day period, and then a tracheostomy needs to be done, that will buy your loved one time to wake up. So, I would need a lot more information here.
However, I hope that this gives you the gist of the information that you need to speak to a neurologist here. Simply by doing a tracheostomy, assuming your loved one is on a ventilator with a breathing tube, you can buy your loved one time, help them to wake up, get them mobilized, stimulate them, do physical therapy, and simply give them time. The brain doesn’t recover overnight. It may never recover at all, but plenty of cases have shown that the brain does recover over time and gets some functionality back. But you need to talk to neuro to your neurologist to get the in and out information there.
Next question that I want to address here has come in from Carly. I know Carly has sent questions before. Carly’s in the U.S. and Carly writes, “They tried to send my daughter to a subacute facility that was being sued for severe medical negligence and abuse and had no visitation rights, and I had no visitation rights due to COVID. I said no, because it was in a different state than I lived, and I knew she wouldn’t have lasted a week. They said they didn’t need my permission due to all facilities being overcrowded due to the pandemic.” So obviously, this must have happened during the pandemic.
“They went behind my back and set up the transfer anyway and had security on standby to physically restrain me because they knew I would’ve protected her with my life. So, I convinced them to just give her to me on hospice since I was the one taking care of her the whole time in hospital. After talking to all the staff and doctors, they agreed, as long as I found a hospice, a doctor, and got insurance from my state and a way to get her life flighted within 24 hours. I did all of it in four hours besides the life flight. So, they arranged that part because they were impressed how I was able to get all that done so quickly. I got her off hospice within a week of getting her home into home care. Give a mother hope and she’ll move mountains.” Carly put a big heart and smile into that email.
Now, Carly, that is an amazing story and I’m very proud to hear that you were able to advocate for your daughter and not let her go to a subacute facility in another state during the pandemic. That sounds horrible. So, you should be very proud of you having done the advocacy for your daughter so well, and basically keep her alive. That’s another thing that we’ve done over the years over and over again.
The number of times we’ve had people come to us and saying, “ICU is telling us my loved one is not going to survive, ICU is telling us tomorrow at three o’clock, we need to stop life support.” The number of times we have successfully intervened and literally saved lives by our intervention, and by giving a second opinion is countless. You need to question everything. You need to absolutely question everything.
Let’s move on to the next question from Paula. Paula says, “Thank you for all the information on your website and on YouTube so far. I’m only speaking for myself to release the stress of being away from the situation that exists. You people perform a great service, but beyond this point, the cost is from my reach and of my family. I will continue to pray that the trained doctors and nurses who are involved will continue their efforts to make sure that the best care is being provided. My daughter is in God’s hands as we all are. Sincerely, from Paula.”
Then she says, “My daughter is in an induced coma after an aneurysm burst in her brain. This happened 11 days ago, and each day we are told that the tube down her throat will be removed tomorrow, and nothing happens. She has had three surgeries so far to stop the bleeding from the one aneurysm that burst, another one to put in a coil, and the third one to remove a clot in her left thigh. Can this situation go on indefinitely? She has a breathing tube and a minimum feeding tube.
Now they are discussing putting a larger feeding tube in place because she’s so thin. She’s 72 years old, and when this trauma occurred, she weighed less than 90 pounds. I’m a Christian and I trust my God to be in charge, but my granddaughter lives with her and she’s doing a great job of keeping the family informed. The doctors in ICU tell her that they’re going to remove the breathing tube tomorrow, and then they don’t. I call this an induced coma, but my question is, how long is this safe to go on not knowing how much she’s suffering neurologically?” Great question, Pauline.
Well, (A), it can’t go on forever. (B), if they’re saying they’re going to remove the breathing tube tomorrow and then they don’t, obviously, something’s not working. It’s probably coming back to our question that I just read out a minute ago where after a hypoxic brain injury, how long does it take to wake up? It’s probably the same here that your daughter might’ve been heavily sedated because of the aneurysm recoil and aneurysm surgery, and she simply hasn’t woken up, especially after head and brain injuries or neurological issues. It can take even longer to wake up.
So, how long can this go on? It shouldn’t go on indefinitely with a breathing tube. If they can’t remove the breathing tube, they need to do a tracheostomy, as we discussed all the way along in this video today, that a tracheostomy is the next best thing. You mentioned she’s been in there 11 days. Again, the cutoff is around 10 to 14 days in ICU before you do a tracheostomy. I think your daughter is right there to have a tracheostomy done very, very soon because this can’t go on forever, but that is exactly what gives her time to wake up, and that is exactly what extends her life expectancy. So, I hope that helps you to understand what is next, but it does tie right in with all the things we talked about today.
Let’s get to the next question from Ellis. Ellis says, “My fiancé is in ICU. No luck in waking him. His pupils are still, they’re not reacting. He’s never had a seizure before. His liver isn’t doing great, and recently he’s had pneumonia and sepsis, but they seem to be a little bit better now. We’re hoping to get him back to the U.K. The language barrier is hard. We are in Portugal. They said they can’t tell of any brain damage until he’s awake. I’m scared he won’t wake up. I think he needs a lot of time though due to being on such high sedation medicines. He’s now on Lacosamide, Lorazepam, and CBD oil. What’s the prognosis? From Ellis.” Well, it’s good to hear that he hasn’t had a seizure before.
You said that he’s got pneumonia and sepsis, so he would’ve been in a prolonged induced coma with a sepsis and a pneumonia. He would’ve been very, very sick. He would’ve been hemodynamically unstable. His pupils are still, but they might simply be non-reactive because he’s been on so many sedatives and opiates and potentially also muscle relaxants that the pupils are not reacting at the moment. So, be patient here.
If they can’t talk about brain damage, well, there’s a simple answer to that. Again, CT scan of the brain, MRI scan of the brain, potentially an EEG, but if he’s still sedated, an EEG will give you limited insights. Of course, language barrier, if you’re in Portugal, doesn’t help. So, either get a translator or I can talk to the doctors and nurses directly. Not that I speak Portuguese, but surely there would be someone on that team that speaks English that would’ve worked overseas at some point in an English-speaking country, potentially even in the U.K. So, I don’t think that should be the issue, but of course, you want your fiancé home as quickly as possible.
Now, you’re talking about his liver isn’t doing great. It’s probably because he’s been filled up by all the medicines during the sepsis, antibiotics, sedatives, opiates, steroids, probably vasopressors, inotropes to keep him alive during the sepsis, potentially muscle relaxants. So, the list of medications is very long and that might well impact on the liver function.
But it also sounds to me like your fiancé here is making improvement. If you’re talking about taking him back to the U.K., that’s a good sign, and you also need to know, Ellis, that approximately 90% of intensive care patients survive. So, don’t give up and don’t think that your fiancé won’t be surviving this. It’s only really 10% of patients in intensive care that don’t survive.
Then again, if your fiancé doesn’t wake up, can’t come off the ventilator within the Day 10 to Day 14, he probably needs a tracheostomy, and then it’s so much easier for him to wake up. You can take off sedation, you can take off opiates, you can mobilize him better. Not that not having a tracheostomy should stop them from mobilizing him, but it is a little bit easier compared to a breathing tube.
Now, I’m going on to the next question, but I also want to welcome you once again to type your questions into the chat pad. Type your questions into the chat pad so I can answer them here.
Let’s move on to the next one from Yashif. Yashif says, “Hi, Patrik. My brother recently had a massive accident in Tennessee on the 3rd of July. He went into trauma ICU followed by cardiac arrest, which led to loss of oxygen supply to his brain and his EEG, MRI, CT scan shows no signs of major injury, but it’s been 14 days. My brother hasn’t responded. He’s currently in ICU. Doctors believe there must be an anoxic brain injury. I’m terrified though. We all live in India, and I can’t go to Tennessee because of the coronavirus. It’s been a very rough situation. I really have hope he will respond but would take some time for recovery. Could you please help me?”
Sure. So, Yashif, once again, this often takes time. This often takes time. I know from your email, it’s been three weeks now. Once again, what helps to buy your brother time? What helps is him having a tracheostomy. What helps is simply being patient. Recovery in ICU is a marathon, not a sprint. Sometimes when someone is critically ill, they might come off sedation and they might have all the sedation out of the system, and yet, they’re still not waking up simply because they’re crook. They’re critically ill. They simply just need time to recover. Their body is not ready for response yet.
Then what needs to happen? A lot of work needs to go into recovering these patients, mobilization, good nursing care, excellent nursing care, regular washes, showers, mobilization, breathing exercises, stimulation, good day and night rhythm. Going back to your email, it’s 14 days, your brother hasn’t responded. Give it some time. Out of those 14 days, he might’ve been in an induced coma for 10 days with heavy, heavy sedation and opiates. He needs to get that out of the system first. So, be patient.
Let him have a tracheostomy if that’s what’s needed to help him wake up, then sedatives can be reduced, opiates can be reduced. They can be switched off completely, and once again, don’t underestimate what can happen over time. People are overestimating a recovery time, but they’re underestimating how long it really takes. I know it’s probably not what everyone wants to hear, but that’s just the unfortunate reality that it simply takes time for someone to recover in ICU.
Next question from Bernard. Bernard writes in, “My brother attempted to take his own life yesterday morning. We don’t precisely know just how long his brain was deprived of oxygen, but our best guess was that it was very brief. I do know that with oxygen deprivation, time is of the essence. Right now, my brother’s body is being cooled, and once his body temperature is brought back to normal levels, they will attempt to decrease the sedation. My anxiety is high because I’m deeply worried and scared, but I do feel that we have a superb team of doctors and nurses caring for him. I’m in another state and I can’t be near, which is what I would prefer to be. I just want to get through these next few days and then we will have a better understanding of what is the next step, but I feel so heartbroken right now as well. But I’m pushing forward because I need to be there for my brother during time of need and advocate for him. From Bernard.”
Bernard, that’s very, very sad what you are describing here, but once again, do not give up. You don’t know how long his brain was deprived from oxygen. Probably the doctors and nurses there don’t know that either, but the rubber will hit the road where … What would he show in terms of waking up? What does the CT scan of the brain show? What does the MRI scan of the brain show? Is there EEG being done? What does the neurologist say? Has he been on sedatives for a long time? What are those sedatives? Can those sedatives be excreted through the liver, through the kidneys? Is his liver working? Is his kidneys working or are they in failure? Because that all plays a big part whether someone can wake up or not. It’s good to hear that your brother’s body is cooled.
“They will attempt to decrease sedation.” Yes. What can happen is when they decrease sedation and he’s got a brain injury, he may not wake up straight away. He may get combative, aggressive, confused because the brain isn’t working, and he can’t be reoriented. That’s certainly something that I’ve seen over and over again, but especially when you’re trying to wean someone off a ventilator with a significant brain injury that it takes time for them to wake up because they are not cooperative or they can’t be cooperative because of the brain injury, that’s when they also need a tracheostomy sometimes.
You’re deeply worried and scared. That’s only understandable, but I’m glad to hear that you feel like you’ve got a good team of doctors and nurses. Bear in mind, I also offer one-to-one consulting and advocacy for families in intensive care. If you wanted me to talk to the doctors and nurses directly, ask all the questions that you haven’t even considered asking, I can do that as well.
Now, before I move on to the next question, once again, I do want to encourage you to type into the chat pad what questions that you have so I can answer them here. If you have any questions after this live stream ends, you can also type them below the video or you can just email them to [email protected] or to [email protected].
Also, I have about another 10 minutes before I wrap this up. I just want to quickly come back to what we do with Intensive Care at Home before I come to my next question. Once again, with Intensive Care at Home, we are operating all around Australia in all major capital cities, including remote and regional areas. We bring intensive care and critical care nurses into the home predominantly for long-term ventilated adults and children with tracheostomies, but also for long-term ventilated BIPAP, CPAP children and adults. We’re looking after clients at home, adults and children with tracheostomies. They’re not ventilated, but still need a critical care nurse, 24 hours a day. We’re providing home TPN, home IV fluids, home electrolyte infusion, such as potassium seizure management as well.
We are in Australia, NDIS (National Disability Insurance Scheme) funded, TAC (Transport Accident Commission) funded in Victoria, iCare funded in New South Wales, NIISQ (National Injury Insurance Scheme) funded in Queensland. We’re preferred providers there. We are also DVA funded for the Department of Veteran Affairs. We have received funding through public hospitals, through departments of health, so there’s a number of funding avenues. We have a team of about 80 critical care nurses providing our service. We are third party accredited for Intensive Care at Home. No other service has developed that intellectual property and can take patients home from ICU as quickly as we can and keep our clients home predictably, of course. For anyone watching these, NDIS support coordinator or NDIS specialist support coordinator who has a participant with a tracheostomy or a ventilator or a tracheostomy without ventilator, BIPAP, CPAP, whatever it is, please contact us if you’re looking for nursing care.
If you’re unsure about whether the NDIS will fund it, assuming your client is less than 65 years of age, please contact us. We can help with the advocacy. We also have our own NDIS support coordinator, so we have a lot of insights about the funding side of things for nursing care with the NDIS. But as I said, we can look at other funding bodies as well.
If you have a loved one in intensive care and you want to go home, please contact us. If you are at home already and you have insufficient support, please contact us. Even if you’re in the United States, please contact us. We can point you in the right direction what to do. Same in the U.K. We have helped clients in the U.K. to get home care through our advocacy going home from ICU directly.
If you are a critical care nurse, please contact us. We have jobs in Sydney, Melbourne, Brisbane at the moment, predominantly. If you’re looking for a career change, please contact us and if you’re interested in home care, we need a minimum of two years critical care nursing experience, ideally with a postgraduate qualification. If you are an intensive care specialist, please contact us. We are currently expanding our medical team as well. Once again, if you’re an NDIS support coordinator or NDIS specialist support coordinator, please contact us as well. Or if you’re an OT and you know of patients with tracheostomy ventilation, please contact us as well. We can help you with all of that. If you’re a hospital executive, please contact us as well. You’ve got bed blocks in ICU. We can help you with that, especially now with the NDIS funding.
So, one more last question that I’m going to answer and then I’m going to wrap this up. A question from Lynette. Lynette says, “Hi, Patrik. My boyfriend’s dad went into cardiac arrest three times this past Sunday and suffered without oxygen to the brain for 40 minutes. The doctors are saying he will never wake up again and that he has no brain activity, but one thing we know this is a tear coming out of his left eye. Could that be something? I swear for the life of me, I don’t think he’s done just yet, but the doctors are saying otherwise. He’s on his way right now to take him off life support.”
Well first of all, you should trust your gut. If you think that your boyfriend’s father is not done with life yet, then you should trust your gut. You’re saying about a tear coming out of his left eye. Well, that could be a reflex. It could be something, he could be crying. It’s hard to say. Very hard to say for me. But one thing is clear, if they want to withdraw life support tomorrow without your consent, that is murder. In my mind, that is murder, and you need to put a stop to that, and you should contact us in a situation like that.
We have turned many similar situations around because we know all about patient and family rights in intensive care. So, you should absolutely contact us if that is the case that they want to stop life support without you or your family’s consent or your boyfriend’s dad’s family consent. That is illegal. I have evidence for that, what I’m saying, because we help many families in similar situation, turning the situation around, reminding hospitals of their rights, asking all the questions you haven’t even considered asking.
Just because the doctors are saying he will never wake up, that doesn’t mean anything. They’re not God. They can’t look into the future, and it’s only been a few days. So, way too early to say what’s going to happen here. Way too early for you to throw in the towel. You have to ask, what is the hurry for the doctors there to rush end of life? Is there an agenda? What’s their agenda? What’s the hurry in ending someone’s life? Do they need the ICU bed? I’ll let you answer that question.
Once again, instead of end of life, it comes back to should your boyfriend’s dad have a tracheostomy instead and prolong his life, give him a chance to wake up? Those are the questions that should be asked, not “Can we take him off life support tomorrow?” It’s only been a few days. Again, what’s the hurry in ending someone’s life? Is it a real or a perceived end of life situation? What’s the difference?
I’ve made videos about this before with the title, “What’s the difference between a real versus a perceived end of life situation in intensive care?” Well, a real end of life situation in intensive care is that no treatment, no surgery, no medications, no nothing can save someone’s life. A perceived end of life situation is when someone could live with life support and yet ICU wants to take off life support and you’re not stepping in because your loved one can live. I hope that explains to you, Lynette, what to do next. Do not give up.
Tom, so nice to see you here. Tom just sent a message. “Thanks, Patrik, for the service, even for those of us in the U.S. who cannot benefit directly. Very helpful info.” That’s very nice. Tom, I did see your email this week. Thank you so much currently for sending an email and acknowledging our email newsletter. I really appreciate that. I haven’t had time to respond to you, but I do appreciate you coming on this call. I can tell you a lot of families in the U.S. benefit from our service, even if it’s only from the consulting and then the advocacy side of things.
I know your son has been at home 22 months and is counting. I know you’re doing an amazing job there, Tom, by keeping your son at home after, I can’t remember many months or many years in ICU, and I know you’re now looking after him at home in the U.S. That’s fantastic. You’re doing a great job and I hope you can keep this going because I know it’s been tough for you and your family at times. Be strong. Be strong, and I know you’re giving it your all. Very nice to hear from you.
Thanks, everyone, for coming onto the live stream. Thanks for all your support. I’m going to wrap this up now. I wish you a wonderful weekend, and I will be back again next week around the same time, Sunday, 10:30 AM Sydney, Melbourne, time at 8:30 PM on the Saturday, Eastern Standard Time, which is 5:30 PM Pacific Time.
I hope you have a great weekend. Have a good one.
Take care for now.
Now, if you have a loved one in intensive care and you want to go home with our service intensive care at home and if you want to find out how to get funding for our service and how it all works, please contact us on one of the numbers on the top of our website, or send me an email to [email protected]. That’s Patrik, just with a K at the end.
Please also have a look at our case studies because there we highlight more about what we can do for clients, how clients can live at home with ventilation and tracheostomies and you can look at our case studies as well at our service section.
Intensive care at home Case studies
And if you are at home already and you need support for your critically ill loved one at home, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of that.
And if you are an intensive care nurse or a pediatric intensive care nurse with a minimum of two years, ICU or pediatric ICU experience, and you ideally have a critical care certificate, please contact us as well. Check out our career section on our website. We are currently hiring ICU and pediatric ICU nurses for clients in the Melbourne metropolitan area, Northern suburbs, Sunbury, Bendigo, Mornington Peninsula, Bittern, Patterson Lakes, Frankston area, South Gippsland, Drouin, Warragul, Trida, Trafalgar and Moe as well as Wollongong in New South Wales.
www.intensivecareathome.com/careers
So we are also an NDIS, TAC (Victoria) and DVA (Department of Veteran Affairs) approved community service provider in Australia. Also have a look at our range of full service provisions.
Thank you for watching this video and thank you for tuning into this week’s blog.
This is Patrik from Intensive Care at Home, and I’ll see you again next week in another update.