Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED”, I am here with a live stream today, where I want to answer your questions if you have a loved one in intensive care. And this is one of the most commonly asked questions for families in intensive care and it’s a question that we get all the time. And today’s live stream is about.
What if the ICU is Guilt Tripping You? Live Stream!
Hello and welcome to another intensivecarehotline.com and Intensive Care at Home livestream. Thank you so much for coming onto the show. I also want to welcome our viewers that watch the recording. Today’s topic is “What if the ICU is Guilt Tripping You?” and I want to talk about that in much detail today.
Just quickly before we start, couple of housekeeping issues. You are welcome to call in live on the show and I will then answer your question on the show. I will also address any questions that came in the last week, coming via email.
Furthermore, what makes me qualified to talk about today’s topic? Well, just very quickly, I am a critical care nurse by background. I have worked in intensive care/ critical care for over 20 years in three different countries. I have worked as a nurse unit manager in intensive care for over five years, and I have been consulting and advocating for families in intensive care all around the world for the last 10 years at intensivecarehotline.com. I’m also the founder and CEO of Intensive Care at Home, where we provide Intensive Care at Home services at home, predominantly for long-term ventilated adults and children with tracheostomies, but also for other medically complex, long-term intensive care patients.
We are currently operating all around Australia in all major capital cities, including regional and remote areas, and we are also now going to the United States with Intensive Care at Home.
Okay, so today’s topic, “What if the ICU Team is Guilt Tripping You?” So you can also type your questions into the chat pad, but this is obviously a big topic. We have so many families in intensive care contact us, quite frankly, and saying the ICU team is negative. They’re saying that treatment is futile. They’re saying that if my loved one is going to survive, that they won’t have any quality of life. They’re saying things like, “How can you be so cruel to your loved one? If it was my family member, I would just let them go.” And the list goes on and on. And the negativity of the ICU team is just enormous and, we are dealing with this every day. And when I worked in intensive care, I can vouch for that myself, that ICUs have been so negative, not really playing the long-term game, not really thinking, “Okay, how can this person recover or improve even if they’re in a long-term stay in ICU?”
It’s a very tricky one, but it’s also something that’s been proven over and over again that intensive care teams are simply wrong because when you look at the research, approximately 90% of intensive care patients survive. So, the odds are in a patient’s favor.
Now, granted, it is fair to say that most patients in intensive care, we are not talking about what quality of life looks like down the line. We don’t know. No one has a crystal ball, but the notion of that people won’t have any quality of life or that treatment is futile. And I argue it’s perceived futility, it’s just a perception. I will hone in more about that a bit later. It’s just a myth really. It’s one of those myths in ICU really.
Now, let’s just break things down in a little bit more detail. And as some of you are aware with our Intensive Care at Home service, most of our clients have been in ICU long term and they’ve all been told that it’s “in their best interest” to die because they won’t have any “quality of life”. And I put quality of life in quotes because that’s just what it is. It’s a perception.
Hi Filmologia. Nice to see you. And also Eric, thank you for your comments so far. Please post your questions in the chat pad and feel welcome to dial in live on the show. I’m not sure one of you is the person have been trying to call me. Sorry that I could not answer yet. I will also type my numbers in the chat pad. So this is the U.S. number, U.S. Canada. I’ll just type that in. If you are in Australia, you can dial this number and if you are in the UK, you can dial this number.
And the whole notion that intensive care units know best, that’s just a whole lot of garbage. The reality is that intensive care teams have huge interests way beyond the prognosis, the diagnosis, and the clinical just simply because they have beds to manage, they have budgets to manage, they have equipment to manage, they have staff to manage. So a lot of what they’re saying is simply driven by what’s going on in an intensive care unit. What’s the financial budget looking like? How many beds do we have left? How many staff do we have left? So, the notion of ICU’s telling you, “Oh well, it’s “in the best interests” of your loved one to simply pass away and have life support withdrawn,” is often a result of what’s happening behind the scenes in ICU . It’s a result of the budgets and the money they’re making, the money they’re not making, the resources available.
And that’s become worse since COVID, because there’s no staff left in ICU all around the world, whether it’s here in Australia, the U.S., U.K., senior staff have left ICU, whether it’s doctors, nurses, RTs. They’re hemorrhaging staff and now the whole notion of ICUs pushing for end-of-life is simply often driven out of bed management necessities and not necessarily out of clinical prognosis. And again, in this day and age, when you look at our service Intensive Care at Home, there is another alternative for people who survive intensive care and want to have treatment at home.
But let me break this down into more tangible, with more tangible details about the whole guilt tripping. So, the whole guilt tripping starts in intensive care at the bedside when doctors, nurses are negative and saying, “Oh, it doesn’t look good for your loved one and it’s unlikely that they’re going to survive.” And again, I bring it back to the research, 90% of intensive care patients survive. So, why would a patient, your loved one be one out of 10? Why would they not be the 9 out of 10 surviving? You got to look at in it in those terms. Furthermore, it then carries on often in family meetings in intensive care. So let me illustrate that with some examples.
I think during my 20 years in ICU working there as a critical care nurse as well as a nurse unit manager, I’ve been in dozens, potentially in hundreds of family meetings. And those family meetings, generally speaking are only called if there are bad news. No one calls a family meeting for good news. It’ll just sort of happen informally at the bedside saying, “Yep, things are going well. Tomorrow your family member will be moved to a hospital ward, to a hospital floor.” No meetings really needed. The meetings are really only called when there’s bad news to be presented with or when families are presented with bad news. And then intensive care teams often set the scene in a family meeting room.
And not only have I been in those family meetings in person when I worked in intensive care, I’ve also been in family meetings as a consultant/ advocate here in Melbourne, in person, or I have been in family meetings over the phone and via Zoom and via Teams meetings and whatnot as part of my one-to-one consulting and advocacy I have been representing families in intensive care over the phone on Zoom all over the world really. Whether it’s here in Australia, in the UK, in America, in Canada, in Ireland, been in many meetings over the phone and via Zoom.
And those meetings are often presented in a way like, “Well, things are not going well. Your loved one is going to die and any treatment from this point forward is futile and therefore, it’s “not in your loved one’s best interest to live.” That’s horrible, especially with knowing that the statistics are on your side. They’re on your loved one’s side.
Again, I am not talking about what quality of life will look like six months out of the night. We don’t know. No one has a crystal ball, but life is sacred, I believe, and I believe that resources need to be used to save lives so that patients can come to a position that they can make their own decisions if there is no advanced care directive, which leads me to that, everyone should have an advanced care directive ideally so that there’s no ambiguity to begin with. Often these situations are driven out of ambiguity as well in terms of what do patients and families want?
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But anyway, coming back to those family meetings, and often intensive care units, they set up those meeting rooms with tissues on the table so that they can make you cry. And I’m not exaggerating when I’m saying that they know exactly how to make you cry in those meetings. They know exactly what to say, they know exactly what not to say. They know how to say it, they know when to say it. They are more or less playing on home ground and you don’t even know it. You just think, “Oh, they’re asking me for a family meeting. I’d better go there.” Well, my advice is, or our advice here at intensivecarehotline.com is always before you go into a family meeting, get an agenda in writing.
Now, think about this. Every meeting in business has an agenda, everyone. Every business meeting has an agenda in writing. So, since when are we having meetings in ICU about life or death and not have an agenda in writing? Since when? It makes perfect sense to have agendas in writing and not just call for a meeting and families falling all over themselves, “Oh well, when do we do this meeting?” Well, it’s not about that. It’s about you saying, “Well, first of all, I want to have an agenda in writing.” And then you think about whether you go to the meeting or not. It’s up to you, not up to them.
But then coming to the psychology of those meetings when they’re trying to guilt trip you in those meetings and when they say, “Oh look, every treatment from here is futile. It’s in your loved one’s best interest to have life support withdrawn so that they’re not suffering any longer.” Well, the question here is, are people prepared to suffer to live? I argue, yes. I can’t answer those questions for every single person, whether they are prepared to suffer, to live. I really can’t answer that question for anyone. But what I do know is this, people are extremely resilient. I can tell you that much. That’s my experience in intensive care. People are extremely resilient.
We have some of our clients for Intensive Care at Home, they’re living at home on a ventilator with a tracheostomy for years and they want to live. So the whole guilt tripping is really rubbish because people want to live, whether they are incapacitated or whether other people would think, “Oh well, that person won’t have any quality of life or doesn’t have any quality of life.” Well, ask the people. Don’t make general statements. Ask the people, please.
Coming back to those family meetings and looking at how they’re set up, they are in control. Especially if there’s no agenda in writing, they’re in control and they’re guilt tripping you by using reverse psychology. Let me explain that to you. When you have a loved one in intensive care, no matter what happens, you would feel an element of gratitude. And there’s a lot of good things happening in ICU. Don’t get me wrong, I’m well aware that there’s a lot of good things happening in ICU, very good things. And the majority of things that are happening in ICU are actually good. People leave ICU alive. There’s no major drama and people move on.
But the reality is in our line of work and you watching these things for you and your family have probably not gone well, which is why you’re here watching this and you’re looking for advice. So, we are in the minority by looking at the things in ICU that are not going so well. That’s the reason why I’m here. That’s the reason why you are here. But you would still, whether things are going well or not so well, you would still feel a sense of gratitude towards the intensive care team by having helped your loved one to this point, right? And that’s okay. But intensive care teams are using that psychological dynamic for their own good.
So what do I mean by that? Because you are feeling some sort of gratitude towards them, it’s easier for you to give in to whatever they’re telling you and it’s easier for you not to even negotiate on having life support continued, for example, having other treatment or options to be looked at. So you are in those situations in a very vulnerable position psychologically, and the ICU team knows that, right? And there’s also the dynamic that you see the doctors and the nurses in intensive care as a perceived authority or perceived power, and you need to stop doing that. They’re just human beings like you and me. You need to stop thinking that they’re some sort of authority. They’re here to help you. They’re here to save your loved one’s life. That’s their job really. Not to use the very complex psychological dynamics in a situation like it for their own good. Their job is to help you.
So, I hope that sort of explains those family meetings where they’re particularly trying to guilt trip you in a room full of doctors, nurses, and you’ve got family there, they’re very good at playing those dynamics and having the tissues on the table so that you can start crying and you can give in. Don’t do that. Don’t do that. Be aware on the psychological dynamics in those meetings and push back with everything that you’re learning here, especially around the notion that most patients in intensive care survive, especially around the notion that the ICU team probably hasn’t even told you half of the things that are happening and the ICU team hasn’t given you all treatment options, which is why it’s so important that you have a second opinion, which we can give you here at intensivecarehotline.com. It’s incredibly important that you put your foot down so to speak, and get the outcomes and advocate for the outcomes that you know you want and you deserve and your loved one needs, quite frankly.
I argue that families in intensive care can accept that their loved one is potentially approaching their end of life. I do believe they can accept that, only if they have a say in the situation and they know that the ICU team has left no stone unturned, so that families know nothing has been left to dry. That’s when I believe families can make peace with that, “Okay. There’s nothing else that can be done. I have to come to terms with end-of-life for my loved one.” But unless every stone has been turned, you shouldn’t give up and you should get that second opinion and you should push back and you should get access to medical records and you should get representation, professional representation from us in a family meeting with the intensive care team . Otherwise, you’ll be fighting an uphill battle and you’ll be lost.
Now, let me talk about some recent examples so that I can further illustrate what I’m saying about when that ICUs are simply guilt tripping you without giving you all the facts. Let’s give some examples here. So we’ve been working with two clients since September. I think one of them even August last year, two long-term stays in ICU. One of the long-term stays was a 35-year-old man after cardiac arrest with many other complex medical issues. And the ICU team had a cardiac arrest, had a lot of bleeding, had gastric bleeds, had liver issues, was very, very difficult situation, really life-threatening. And quite frankly, the client’s life was hanging at a thread for months. For months on end. And ICU was trying to guilt trip the family from day one. And we always made suggestions, “Well, have they tried this? Have they tried that? Don’t give up.” They didn’t even want to offer a tracheostomy in the early days.
And it was touch and go for many months and many weeks on ends, many setbacks. And where we always advise the family again, here’s what they should do next. It’s almost predict to what was happening next. And lo and behold, after now since September last year, the client last week finally went home. No more tracheostomy, has a feeding tube but it was a very good outcome and the family is eternally grateful for us that we coached them and advised them all the way along. And I mean, it’s not the only client that we do that for, but it’s just one example where they were trying to extremely guilt trip the family and if they had given in, their 35-year-old family member would’ve passed away by now. It’s terrible. He’s 35 and he wanted to live. He clearly indicated to everyone, as soon as he regained consciousness, he indicated to everyone that he wants to live. And the family has always indicated that’s what he would want.
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And finally, he’s home after all these months in ICU. And what a great outcome. And what did ICU want? Well, ICU wanted to avoid their worst-case scenario. What is their worst-case scenario? Their worst-case scenario is that they’re looking after a patient in ICU indefinitely with an uncertain outcome. And this is exactly what this situation presented. Cost them a lot of money, cost them a lot of resources, but we are dealing with a life. We are dealing with someone’s life here and we can’t give up just because ICU needs to manage beds and staff and resources. So, that’s one example.
Another example is, again, another client that we worked with probably since August, even last year, and their family member has been more or less been moving between ICU and step down ICU for many months now, more or less between ICU and HDU, high dependency or step down ICU. And again, this family has been told from day one, “Oh well, your loved one is going to die and there’s no hope.” And there we are many months later, this lady is still alive and it’s almost like a regular occurrence where the family gets told, “Well, it’s just a few more days and then your loved one will die.” And then similar to our other client, we review medical records regularly. We have access and the family has given us access to the medical records online, and then we can give the second opinion in real time.
And every time the family gets told, “Oh well, your loved one is going to die.” We are looking at it and we say, “Well, there’s no indication for that.” And this is what I mean by if you don’t have that second opinion, they can not only guilt trip you, they literally have your loved one’s life in your hand by not only guilt tripping you, but by also, they can do whatever they want if you don’t have that second opinion. You might just give in and you think, “Well, they know best.” It’s not the case. That is not the case. And if someone is in this situation, the patient is hemodynamically stable. They’re not on inotropes they’re not on vasopressors. Yes, they are on ventilation with a tracheostomy. Yes, they’re on life support, but as long as that’s stable, there’s no indication that this particular patient is going to die.
And what’s similar with those two situations, and also a third client that I will mention in a minute is the ICU team didn’t even educate the family about the option of a tracheostomy. Initially, those patients were so sick that they couldn’t do a tracheostomy because they were too unstable in the early days of their ICU admission. And again, the ICU was pushing towards end-of-life and trying the extreme guilt trip for families. When we came in and we said, “Well, what about a tracheostomy to buy your loved one time?” And this is also a dangerous inflexion point because if you as a family don’t know the options, it’s easier for ICUs to withdraw treatment before your loved one has a tracheostomy. If your loved one can have a tracheostomy, that in and of itself often buys time, assuming that the heart is stable, the kidneys are stable, that other organs are stable. Again, we can help you look at those situations in more detail.
Now, another situation that we’ve had more recently is another client who is still in ICU as we speak. And this particular client is, again, ICU was really pushing towards end-of-life. That was a horrible situation where basically, ICU told our client or our client’s family, “Well, tomorrow at three o’clock we are going to withdraw life support because treatment is futile. It’s not in the interest of your family member to live.” You got to think about that. It’s not in the interest of someone to live. It’s terrible.
But anyway, similar to many other situations, we turned this situation around by representing the family and knowing what to say, knowing what their rights are. Most families in ICU have no idea what their rights are. And again, if you don’t know what your rights are, you’re fighting an uphill battle. If you don’t know what questions to ask, you’re fighting an uphill battle and you absolutely need to know what you’re talking about in those situations, and that’s where we can help you with very, very quickly.
Anyway, so we turned that situation around as well, by advocating for the client, by reminding the ICU that killing this patient could be perceived as murder. And I know YouTube might be demonetizing me now because I’m using such strong words, but I have no other way to describe what’s happening often. And unfortunately, you need to remind ICUs that they just can’t kill patients without your consent. That is murder. And you got to remind them, you got to rub it in their face, unfortunately, because that’s when they back off. That’s when they realize, “Oh, they’re just not rolling over and let me do whatever I want to do.”
So, other examples are that most of our clients with intensive care at home, they were all long-term intensive care patients. And if I talk to our clients and our families, they all say, “Oh well, we’ve been guilt tripped from day one. We were always told, ‘Well, that person won’t have any quality of life. That person won’t have any quality of life. They shouldn’t be going home on a ventilator with a tracheostomy.'” Well, they are at home. And those families would not let the ICU guilt trip them and they’re living at home and that’s where they want to be and that’s how they want to live. And it’s not up to ICUs to determine who should live and who should die. It’s up to ICUs to make sure that we can maximize people living. That’s the job of an ICU. It’s not their job to make a judgement about what you want for your family member. They need to remove the judgement.
Right, Eric, you are saying, “My loved one is stable at about three months with a tracheostomy, anoxic brain injury.” Okay, that’s great. Eric, where is your loved one? Where is your loved one? Is he, she in ICU? Where are you and what question do you have around that?
Anyway, so let’s just go through long-term intensive care. Right, okay. So Eric, what is it… Eric, what is it that you’re specifically looking for a lot of answers in the future. Sure, sure. What’s the ICU telling you? What is the ICU telling you? What’s the outlook? What is the outlook that they’re telling you? Are they hopeful about the recovery? Are you hopeful about the recovery? Why is your loved one still in long-term intensive care? Obviously, they have a tracheostomy. Are they still ventilated? Tell me more about your loved one while I’m going back to some of those questions that came in this week. You are hopeful about the recovery. That’s great, that’s great. And what does that mean? That the brain will recover? Does it mean that the tracheostomy will be removed? Tell me more.
She can’t live without a ventilator . Right. What makes you so certain about that, Eric? That she can’t live without a ventilator. And this is what I mean. This is where a second opinion could come in handy. And maybe your loved one can’t live without a ventilator, but unless you have that more or less verified by a third party, can’t live without the ventilator at the moment. Yeah. Already a distinction there. There’s already a distinction there.
Okay, so let’s just go through some questions that came in this week. So, there was a question from a reader… Right, you are saying you need a second opinion. I agree. You need a second opinion. And have you considered, I don’t know where you are, have you considered home care? I don’t know your location. If you’re in Australia, we can definitely help you with home care, but even if you’re in the U.S., we can help you with home care. Have you considered that? Why is your loved one still in long-term ICU, especially with services like Intensive Care at Home available?
You’re in Chicago. Okay. Right, okay. You know what you might want to do? After this call, maybe send me an email to [email protected] with more information. Or you can also call me if you’re in the U.S. on 415-915-0090. And our numbers are on our website at intensivecarehotline.com, but you might just need that second opinion and maybe she can come off the ventilator. I wouldn’t know without having all the details.
Okay. So, let’s just look at some questions from this week. So Rita has written in and she said, “My brother is in ICU trying hard to move his fingers and he’s blinking a lot. Can he recognize us?” It’s hard to say because you get reports from patients after ICU. They say, “Hey, I remember every little thing. I remember people talking to me. I remember my sister being there. I remember my spouse being there. I remember my children being there, I remember my mom, my dad being here,” whatever it is. And then there’s others, they say, “I don’t remember a single thing or I had nightmares in ICU. I remember that being a really difficult time.” So, the reports from ICU survivors are very mixed. The reports are very mixed and it’s not a one-size-fits-all. It probably also depends what medications someone is on. It also depends how quickly someone can wake up or not wake up. It depends on a number of things.
So, let’s move on to the next question. But either way, you should continue talking to your brother when you’re there. Continue talking to your brother, continue asking him questions, continue talking to him. Ask him things like, can he squeeze your hand? Can he blink his eye? Keep encouraging him to do that.
Okay, let’s move on to the next question from Ashley. Ashley writes, “Spleen infarct that they didn’t seem to pay too much attention to. She was hallucinating a little bit and had to be put on CPAP. Only discovered throughout the time in the hospital she had sleep apnea and diabetes due to the steroids they have been giving her. While on the CPAP when I last saw her, she was okay. Before putting her on the CPAP though, she had very low blood pressure, lowest being 75 over 45.”
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“They were able to stabilize it in rehab. So that’s when I left her thinking she would be okay. Her boyfriend stayed with her and one minute she was telling him she was okay, to the next minute, a monitor beeping and her being completely unresponsive, not waking up. They rushed her down to the ICU and discovered she had a massive blood clot / infarct in her lungs, which she needs to be put on ECMO (Extracorporeal Membrane Oxygenation) for. I do have hope she will be pulling through because she’s pulled through once before. I’m at a loss of word because all day today, me and my family told the nurses there was something wrong. I’m constantly praying hopefully she will pull through again. My mom has to make it. What should I expect?”
Let’s just go through it step by step. So she was on CPAP obviously, and she had left ICU initially. Her blood pressure was low. Now, if she’s on CPAP and her blood pressure was low, I’m not sure whether she should have left ICU in the first place because with the blood pressure of 75 over 45, she should have probably been a medical emergency called straight away. It looks like that’s been missing. So, then the other thing is someone on CPAP shouldn’t necessarily leave ICU in the first place, even if it’s for sleep apnea. You got to make sure that someone can manage the CPAP, knows when to put it on, knows when to take it off, knows how to monitor the parameters like breathing rate per minute, volume, oxygen saturation. Maybe that was missed as well. I don’t know. I would need to look at the medical records to answer that particular question.
In terms of your mom having high sugar and diabetes due to the steroids that have been given. A lot of patients in ICU have temporary high blood sugar as a stress response. Being a patient in ICU is very, very stressful and one of the stress responses from the body is to respond with high blood sugar because again, it’s stress response. It can be induced by the steroids, but even for patients that are not on steroids, there can be a high blood sugar. And then obviously, she must have had a cardiac arrest due to a PE (Pulmonary Embolism). Like you’re talking about a massive blood clot in her lungs, that’s probably a pulmonary embolus that led to a cardiac arrest and therefore, she was probably put on ECMO.
Now, what should you expect? Now, even though you haven’t said it, I presume your mom went into cardiac arrest, her heart stopped, they would’ve resuscitated her with CPR (Cardio Pulmonary Resuscitation) and then they put her on ECMO. Now, ECMO gives your mom’s heart the ability to recover to rest because ECMO is like a bypass machine, a heart-lung bypass machine that can take over the function of the heart and the lung for a period of time.
Now, if that is the case, hopefully the heart can recover. Maybe she’s in an irregular heart rhythm, that can often happen after cardiac arrest and hopefully, your mom’s heart can recover. Hopefully, she can get back into a normal regular sinus rhythm and then slowly wean ECMO off. So, what does that look like?
It looks like the support from the ECMO will gradually be reduced assuming the heart is getting stronger. Now, how can they check that the heart is getting stronger? They should be doing echoes or ultrasounds of the heart, measuring ejection fraction in particular. Ejection fraction means the strength of the heart to contract or the contractility, right. After cardiac arrest and going on ECMO, I’m presuming that the ejection fraction would’ve been very low, probably lower than 35%. The goal is to get it up to 60, 65, 70%. That can happen over time. Your mom is most likely on inotropes or vasopressors such as dobutamine, milrinone, maybe some noradrenaline or epinephrine, maybe some adrenaline or epinephrine, maybe some Levosimendan. So, maybe on some vasopressin, and hopefully, that can all be weaned off as your mom’s heart is hopefully recovering and as the ECMO is doing the work for the heart.
So, gradual process and your mom’s heart or the ECMO machine would be putting out cardiac output maybe three to five liters a minute depending on your mom’s weight again. And then over time, the cardiac output over time with the ECMO machine should be reduced and the heart should be doing more and more of the work again. So, that’s the steps that need to be taken to wean your mom off the ECMO machine.
Other things you got to look out for is your mom would most likely be on a heparin infusion because the risk of another blood clot with a pulmonary embolism is very high. The risk of another blood clot, especially with the ECMO is very high. So, those are things that need to happen. So, other things you should be looking for, it’s not clear to me whether your mom is on a ventilator or not, but most likely she is. Because if someone had a pulmonary embolism cardiac arrest, they would’ve ended up tubed on a ventilator. So questions are, does your mom need a tracheostomy? If she does need a tracheostomy, can she have a tracheostomy while she’s on ECMO because of the heparin she’s on? Heparin can be a contraindication for a tracheostomy because heparin is an anticoagulant and it makes your mom more prone to bleed.
So, surgery is almost contraindicated at the moment. They would need to stop the heparin maybe for up to 24 hours before they can do a tracheostomy. And that’s risky because then your mom may form another clot, another pulmonary embolism, or maybe sustains an ischemic stroke. You don’t want any of that. So they have to weigh up the risks and the benefits when to do a tracheostomy, assuming she does need a tracheostomy. Maybe the first next step is to wean her off the ECMO and then look at a tracheostomy next.
Question is, how long does your mom need to stay on ECMO? For example, no one should be ventilated for more than 10 to 14 days, and if they can’t come off the ventilator, then a tracheostomy needs to be considered. Is there an option for your mom to be weaned off the ventilator while she’s on ECMO? I don’t know, but again, you got to ask that question. Then she would need a tracheostomy would be one less risk factor.
Now, let’s take the worst case scenario. Let’s just say your mom can’t be weaned off the ECMO. The next steps are probably to look at an LVAD (left ventricular assist device) or an RVAD (right ventricular assist device) depending on which side of the heart are impacted. And then LVAD or an RVAD would also take over the function of the heart. And then another next step might be to look at a heart transplant. So, those are the steps that I can see for your mom going forward. So, many obstacles to overcome. Many patients on ECMO often also go into kidney failure. She might need the hemofiltration or dialysis as well. You should ask whether the kidneys, liver are working.
- “Why your critically ill loved one might need Dialysis(Kidney machine) or Haemofiltration for Kidney Failure(Renal Failure) and is having a Dialysis machine attached to them!” (PART 1)
Another issue that might come up with your mom’s situation is she might have an anoxic or a hypoxic brain injury depending on how long there was “downtime”, how long they did CPR for. So that’s another consideration. Does she have a brain injury due to hypoxic or an anoxic brain injury? So that is what to expect. ECMO should be weaned. Ideally, the heart should regain some functionality. Again, if that doesn’t happen, look at LVAD, RVAD, potentially a heart transplant as a last resort. But ideally, your mom should be weaned off the ECMO and then weaned off the ventilator, avoiding what I just described with LVAD, RVAD, or lung transplant and should be weaned off the ventilator to avoid a tracheostomy. But a tracheostomy is definitely an option.
Okay, Eric, you are saying, “I’m the best friend, so the mother has access to all the information, which is why my questions are uncertain. I have to talk to her and we’ll do that.” Sure. Understood. Okay, so I hope that answered the question from Ashley.
Let’s just move along to the next question and okay, this is a question from Anu. Anu says, “My father has been in a vegetative state on a ventilator with a tracheostomy in ICU for five months now. What should I do if Intensive Care at Home is not an option for us?”
Well, that’s a great question. Well, first question to me is what’s your understanding of a vegetative state? I would be more inclined to ask for a Glasgow Coma Scale. A Glasgow Coma Scale is measurable and a vegetative state is a very broad term. If you look at the Glasgow Coma Scale, it ranges from a score of 3, which is the lowest score, to a score of 15, which is the highest score. So a Glasgow Coma Scale of 3 means your father is not doing anything, not opening eyes, not breathing, or might be breathing, but not opening eyes, not moving, not responding to pain, not talking, no nothing. That’s a Glasgow Coma Scale of 3.
A Glasgow Coma Scale is 15 is the maximum score, which means is someone being alert, awake, talking, oriented. That’s a Glasgow Coma score of 15, maximum score. I’m presuming that everyone, you watching this including myself, is a Glasgow Coma Scale of 15. And as I said, a Glasgow Coma Scale of 3 means there are no responses whatsoever. So, my question to you, Anu, is your father a Glasgow Coma Scale of 3, or is he somewhere in between a 3 and a 15? That would be my first question.
My other question would be, what if Intensive Care at Home is not an option? Well, I don’t know where you are. You haven’t shared your location with me. I would argue Intensive Care at Home is an option. No matter where you are, you should reach out to us and share your location with us. Again, if you are in Australia, we can help you very quickly, but even if you’re in the U.S., we can help you now. You should contact us about Intensive Care at Home and then we can help you from there. So, I hope that clarifies that question.
Now, if there are no other questions, I would like to slowly wrap this up. Please type your questions into the chat pad or call me on the show now. I’ll type the numbers, my phone numbers in the chat pad. Get your questions answered live on the show now. If that’s not the case, then I will do another YouTube live on Sunday at 10:30 AM Sydney Melbourne time, which is 8:30 PM on a Saturday Eastern Time in America, 5:30 PM Pacific time this Sunday.
The topic this Sunday will be “Taking my sister home to take care of her. She’s living on a ventilator with a tracheostomy and they declared her with a partial brain injury.” So, that will be the topic this Sunday.
Okay, FaithUnseen has a question. “My loved one, 45 years is stable with a stroke, right hemiparesis. He has been in CCU (Critical Care Unit). And then in ICU since the 30th of March this year. He has a tracheostomy and a PEG tube (Percutaneous Gastrostomy Tube) or G-tube (Gastrostomy Tube). They are asking a family to find him an LTAC. We are in Texas.” Right, okay. What is it that you would like, FaithUnseen123? Do you want your loved one to go to LTAC? He’s very young, or would you like for him to go home? That would be my first question. What do you want? And once you know what you want, then I can really advise you from there.
Our Intensive Care at Home clinic liaison nurse is in Texas. And she might be able to help you with finding options for home care. Again, you can contact us, send us an email to [email protected], or you can call me on one of the numbers on the top of our website with the information that I would need to help you guide further. Or you can just type it now into the chat pad and say what you would like for your loved one. Do you want to stay in LTAC, do you want to go home? What would you like? “He’s weak. He needs therapy.” Okay. Does he get therapy where he’s at the moment?
Okay, Eric, you are asking, “Is a tracheostomy for life? I don’t understand it. She’s conscious.” Okay, so it really depends. A tracheostomy could be for life if someone is ventilator dependent, okay? I don’t know whether your loved one is ventilator dependent or not. You haven’t shared that. Or whether your loved one is ventilator dependent for the rest of their lives. Again, you might need a second opinion here. Just because someone is conscious doesn’t necessarily mean they can get rid of the ventilator or the tracheostomy. So, it all depends, would need more information. A lot of it depends on can your loved one swallow? Can they cough? A lot of depends on that.
Okay, so FaithUnseen says your loved one needs therapy, he’s weak and he has never been out of bed. That’s a concern. That is definitely a concern, and it’s something unfortunately, we see that over and over again that families do not get their loved ones out of bed in ICU or in LTAC. People are just complacent. He needs to get out of bed as a matter of urgency.
Okay, I do need to wrap this up for today. I’ve been going for nearly an hour. As I said, I’ll be back on Sunday, 10:30 AM Melbourne, Sydney time, which is 8:30 PM Saturday night, Eastern Time in the U.S., 5:30 PM Pacific Time in the U.S.
Now, if you have a loved one in intensive care, go to intensivecarehotline.com, and call us on one of the numbers on the top of our website or simply send us an email to [email protected] and we can advise you for your loved one in intensive care.
If you’re looking for home care for your loved one in intensive care, especially for long-term ventilated adults and children with tracheostomies, but also for CPAP, BiPAP, ventilation, seizure management, home TPN, please contact us at intensivecareathome.com. Again, we are operating all around Australia, all major capital cities, including rural and remote areas and also in the U.S. Please contact us so we can help you take your loved one home.
Also have a look at our membership for families in intensive care at intensivecaresupport.org. There you have access to me and my team 24 hours a day in the membership area and via email, and we answer all questions intensive care related 24 hours a day.
If you need a medical record review or an NDIS (National Disability Insurance Scheme nursing assessment for our clients in Australia, we can help you with that as well. We review medical records for clients all around the world in ICU in real time, as well as after intensive care, but it’s critical that we can review them in real time so you have a crucial second opinion in real time. And again, we are doing NDIS nursing assessments as well.
Now, like the video, subscribe to my YouTube channel for regular updates for families in intensive care. Share the video with your friends and families. Click the like button, click the notification bell and comment below what you want to see next, what questions and insights you have from this video.
Thank you so much for watching. This is Patrik Hutzel from intensivecarehotline.com and intensivecareathome.com and I will talk to you very, very soon.
Take care everyone. Thank you.
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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In Your FREE “INSTANT IMPACT” report you’ll learn quickly how to make informed decisions, get PEACE OF MIND, real power and real control and how you can influence decision making fast, whilst your loved one is critically ill in Intensive Care! Your FREE “INSTANT IMPACT” Report gives you in-depth insight that you must know whilst your loved one is critically ill or is even dying in Intensive Care!
Sign up and download your FREE “INSTANT IMPACT” REPORT now by entering your email below! In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care! In your FREE report you’ll also discover
- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
- How to Eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
- You’ll get real world examples that you can easily adapt to you and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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