My Wife’s in ICU on a Ventilator with a Tracheostomy, ICU Team Said She’s “Unweanable”! Help! Live Stream!

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,

CAN YOU LIVE ON A VENTILATOR AT HOME? INTENSIVE CARE AT HOME LIVE STREAM!

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

https://intensivecareathome.com/can-you-live-on-a-ventilator-at-home-intensive-care-at-home-live-stream/

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

My Wife’s in ICU on a Ventilator with a Tracheostomy, ICU Team Said She’s “Unweanable”! Help! Live Stream!

Wherever you are, welcome to another live stream of Intensive Care Hotline and Intensive Care at Home.

Today’s live stream is, “My mother is in ICU on a ventilator with a tracheostomy. I’ve been told from the ICU team that she’s unweanable. Can you help me if she is really unweanable?” And I want to elaborate on that topic today in much depth with some case studies.

First of all, I want to thank you for coming onto the show, for coming onto the live stream. I want to thank you for all your support. I already have some questions there in the chat pad, but I’ll come to that.

Good morning. Good evening. Modema, nice to see you again. Just some housekeeping issues, type your questions into the chat pad. You can also dial in live on the show. There are phone numbers you can call on in the description of this live show today. It’s best if you can leave your questions until the end of the presentation. If you have questions to today’s topic, please type them in now and if not, I’ll answer them at the end of the presentation.

Just before I go into today’s topic, you might wonder what makes me qualified to talk about today’s topic. I’m a critical care nurse/intensive care nurse. I have worked in intensive care for over 20 years in three different countries. I have worked as a nurse unit manager in intensive care for over 5 years. I have advocated and consulted for families and patients in intensive care for the last 9 years as part of my intensivecarehotline.com professional consulting and advocacy service and I also run and own a service called Intensive Care at Home where we provide intensive care services at home as a genuine alternative to an intensive care bed where we predominantly look after long-term ventilated adults and children with tracheostomies.

Okay, so let’s dive into today’s topic.

What is unweanable? We have been working with a client and we are still working with a client who has their mother in intensive care with lung cancer. She’s been ventilated with a tracheostomy for quite some time. She has been told by the doctors that her mother is unweanable. Now, that was on the assumption that the lung cancer will continue to grow and that it will take up space in the lungs and that she can’t breathe, quite frankly. Our first question at the time was, well, what is actually the oncologist saying who’s treating the cancer? The oncologist was positive that the cancer might shrink and that then she might be able to be weaned off the ventilator Now, after a few months in ICU, the patient does have some time off the ventilator and is moving actually in the direction of weaning.

The biggest challenge for families in intensive care is that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights and they don’t know how to manage doctors and nurses in intensive care.

This is exactly what we’re seeing day by day. Families don’t know what to look for. They don’t know what questions to ask. They just buy into the doom and gloom and the negativity of the intensive care team without looking at the research, without talking to someone like us here at intensivecarehotline.com, where you can have a second opinion. Intensive care teams need to manage beds. They need to manage resources because they’re so scarce. One way for them to manage scarce resources is by being negative, by setting low expectations that makes it easy for intensive care teams to “sell you” on withdrawing treatment.

T.S., I have seen your questions and I will get to them. I just want to address today’s question first and I’ll come to them at the end of the presentation, but I do want to address today’s topic first and then I’ll come to your questions.

In this situation, her mom was deemed unweanable and it just is inaccurate. Modema, you’ve made a comment here where you’re saying, “Never give up hope.” That’s exactly right. The minute you give up hope it’s no point.

But I do want to break down today what is unweanable in intensive care? Does it exist even? Is it a term that should be used? Is it a term that should be used with caution? Let’s look at this.

What is unweanable? There are situations in intensive care, or there are situations for long-term ventilated adults and children where they are unweanable at least in 2022. I tell you why it’s unweanable as of now. For example, we have some clients at home that have a C1 or C2 spinal injury. They’re paralyzed from the neck down means they can’t use their breathing muscles. Therefore, they are unweanable in 2022 and why am I pointing that out? Because we don’t know in five years’ time, maybe someone’s found something that can help those patients to wean off the ventilator. I don’t know. I can’t look into the future. I don’t have a crystal ball. But in 2022, I would argue that C1 and C2 spinal injuries are unweanable. The same is applicable for MND (Motor Neurone Disease) patients or clients, or ALS (Amyotrophic Lateral Sclerosis) clients. Those are neurodegenerative diseases that paralyze the muscles and therefore those patients won’t come off the ventilator for the rest of their lives, again in 2022 because simply I don’t know what the future holds and hopefully a cure can be found for those people.

Everything else I argue, from my experience, should not be considered as unweanable. Now, one might argue, there are some COPD (Chronic Obstructive Pulmonary Disease) and asthma clients, or patients, and they might say that if COPD or asthma patients have tracheostomy and are on ventilator, they are unweanable. Yeah, I’d say there is a higher chance for those patients to have a higher risk to be deemed unweanable. But again, difficult to sort of say. One might argue that for someone with COPD or asthma, if they choose to have a tracheostomy that it’s often for end-of-life care. A lot of it comes down to goals of care as well. Just because someone is labelled as unweanable doesn’t necessarily mean it’s a negative thing. If we look at our C1 or C2 spinal injury clients or Motor Neurone Disease, neuro disease clients, you could argue they are unweanable. But if they weren’t on a ventilator in the first place, they wouldn’t be alive. So, it really depends on from which angle you look at it. They might be unweanable in 2022, but they’re alive and we have them at home. They live with their families, and they can have a reasonably good quality of life, and they have a quality of life that they’re happy with. It all comes down to the goals of care.

The goals of care are up to the patient, are up to the family, not up to ICU teams. It really depends on where you sit in all of this, and it doesn’t really matter where the ICU team sits because everything is there, services are there, technology is there. Everything is there for you to make up your own mind, make up your own decision. If there are patients in intensive care, for example, that have, let’s just call it life-limiting diseases, such as COPD or asthma, or like I mentioned, a neurodegenerative disease such as Motor Neurone Disease or ALS (Amyotrophic Lateral Sclerosis), it’s not for anyone to say whether unweanable is a good or a bad thing, it just is in those situations. You make up your own mind, whether you consider it as a good thing, a bad thing, is it neutral? It really depends on the goals.

Also, when people use the term unweanable in intensive care, I should also throw in, it’s probably a term that they’re using in the context of their limited time horizon. What do I mean by that? Let’s just say you’re having a patient in ICU with COPD or asthma that can’t be weaned off the ventilator in a timeframe that is convenient for the intensive care team. That’s when intensive care teams also might use the term unweanable. Whereas maybe that patient needs nine months to be weaned off the ventilator in intensive care. Is that a time the intensive care team wants to invest? That’s a question you should be asking rather than, is my loved one unweanable or am I unweanable? Or whoever you are referring to when you are asking the question. You got to look at it from different angles when the term is being used.

I have seen patients needing 6 to 12 months to coming off the ventilator. Is that a good thing? Is that a bad thing? People have thought with some patients that they’re unweanable. I’ve seen patients after motor vehicle accidents, being stuck on a ventilator with a tracheostomy for months on end and people thought, “This patient will die and won’t make it” and things turned around and they came off the ventilator. Then you have other patients in ICU where you think everything is going well, they’re on track and all of a sudden, they do not survive their stay in intensive care. There’s nothing that is impossible. I believe there is a term where someone can use the word unweanable for certain clients, but, again, that doesn’t mean it’s a bad thing. It just is and you got to look at what are the goals of care? What are you happy with? What do you want? What does your loved one want?

Also, you got to look at before someone is using the word unweanable, what would’ve happened if a tracheostomy wouldn’t been done in the first place? Or if someone has a breathing tube or an endotracheal tube and the ICU team is saying this person is unweanable, we recommend not to proceed to a tracheostomy, what’s the point there?

Context is what matters here. By proceeding to a tracheostomy, by going from a breathing tube to a tracheostomy, someone might be having a difficult time coming off the ventilator, but what’s the alternative, letting them die? That’s often the alternative. You got to look at what’s possible, what are the odds, and do you want your loved one to die just because someone labels them unweanable?

There are options when someone is labelled “unweanable”. (A), the options are that they might be weanable, and (B), the options are services like Intensive Care at Home, where we provide services for long-term ventilated patients at home with tracheostomy or otherwise medically complex patients. The options are there. Don’t let labels from ICU teams with certain interests stop you from seeking solutions because the solutions are there.

Do your own research, dive into the topic and the solutions are there. Don’t let negativity stop you from searching for solutions because you got to read between the lines when intensive care teams say that someone is unweanable. All they might say to you is, “Well, we need the ICU bed.” And by telling you that your loved one is unweanable, “we have a good case to stop treatment, your loved one may die, and then we have an empty ICU bed.” Rather than saying, “Well, maybe your loved one is unweanable but let’s look at services like Intensive Care at Home. Let’s take your loved one home with a tracheostomy and let them spend time at home with their families.” And Intensive Care at Home, with a service that’s accredited to provide intensive care at home. I hope that sheds light on what’s considered being “unweanable”.

Here are other issues that come into play with all of this. It also depends on how much effort an ICU team is putting towards weaning someone off a ventilator. I’m going to break this down, so you really understand what I mean by that. When someone comes into ICU with a breathing tube, is in an induced coma, is sedated, on opiates, and then they trying to wake them up and it’s not working. They can’t be weaned off the ventilator within 10 to 14 days and ICU is telling you, “Well, we’ve got two options. The first option is end-of-life palliative care, we’ll take the breathing tube out and we’ll stop treatment. Or number two, we’ll do a tracheostomy to give a second go at weaning off the ventilator.” Well, that might be the right thing to do. But the first question that you need to ask as a family if you are confronted with a situation like that is, has the ICU team done everything beyond the shadow of a doubt to get your loved one off the ventilator in the first place and avoid the tracheostomy? You can only really answer that question honestly and ethically, if you know what you’re talking about and if you know what needs to be done to wean a patient in ICU off the ventilator. That is number one.

It’s an art and a skill to wean someone off a ventilator and it takes effort. It takes work. It’s not as simple as just switching off sedation and opiates and then you take the breathing tube out, no. There’s often much more to it. It’s a real skill. It’s a real art and I have made videos and live streams about this, how to wean someone off a ventilator with a breathing tube or with a tracheostomy. You really have to search for context. You have to search for meaning when it comes to weaning off the ventilator and people labelling someone with unweanable.

Well, my first question is, what has happened leading up to the ICU team saying someone is unweanable? Have they done all the right things? Or have they been complacent and not done everything beyond the shadow of a doubt to wean someone off a ventilator? Have they just given up at the first attempt? Have they done the mobilization? Have they used the right sedatives? Are we dealing with withdrawal from sedatives? Is that why your loved one can’t be weaned off the ventilator? How do we need to manage the withdrawal from sedatives, from opiates? How are we dealing with ICU delirium, and ICU psychosis? Just to name a few issues that can come up. How are we dealing with disturbed day and night rhythms? Is that impacting on someone being labelled unweanable? Are we having a very junior medical and nursing workforce in the ICU working that are not skilled on weaning someone off a ventilator? Because it takes years of experience. It’s not something you just walk into an ICU, whether as a doctor or as a nurse, and you’re just weaning someone off a ventilator. That takes years of practice and experience to do it safely, do it competently, do it efficiently, and do it successfully.

If you talk to people in ICU in 2022, whilst we’re still in the middle of a pandemic, ICUs have lost a lot of senior staff and now we have junior nursing staff running the ICUs, and I believe that the level of care has dropped significantly. You really got to look at the context here on what is happening in the environment as well. Are patients in 2022 more “unweanable” than in 2015 because we have fewer resources now in ICU? Because resources have been depleted during COVID? Don’t we have any senior staff left in ICU, doctors, and nurses because they’re burned out and now nobody knows how to wean someone off a ventilator? I do believe those are valid questions in 2022.

I do want to come back to all the questions from earlier. I had a question here from T.S. 1213, “My brother is still in ICU. He has been in a coma from June 23. He still can’t breathe on his own. We noticed some movement, but they said it’s reflexes. His brain is swelling. What to do? Okay. T.S., tell me a little bit more. Why is your brother in ICU? What happened to him? T.S., if you’re still here, if you can let me know why is your brother in ICU? What led him there? And then I would love to answer your question why he’s not there yet. Okay.

While I’m waiting for T.S. response, okay, you know that Modema, that cardiac arrest, 20 minutes without oxygen. The two of you might have spoken. Okay. 20 minutes without oxygen. Well, okay. If that is the case, have they done a CT scan of the brain or an MRI scan of the brain? Just take some notes, right? Modema, you saw the earlier comment. Okay. Right. And what do you know what the CT scan or the MRI scan shows?

T.S., if you’re still here. Modema says, “No mention of scan.” Okay. All right. That would be most important, to find out what does the scan show? It would be important to know what does the neurologist say? Brain swelling happens after a hypoxic brain injury but just because the brain is swelling, doesn’t necessarily mean there is brain damage. That’s why I’m asking for the actual CT scan or MRI scan result. There would be so many questions that need to be answered, T.S., to break this down for you. It looks like you’ve gone but yeah, I would really love to hear the whole story. Okay.

But coming back to, while I’m waiting maybe for you to come back and comment on your brother’s situation in more detail, let’s just come back to what’s being unweanable, and let’s probably let’s just take this situation, just because you’re saying your brother has hypoxic brain injury by the sounds of it after cardiac arrest doesn’t mean he’s unweanable. It also depends now on how you break this down. Your brother might need a tracheostomy and your brother might come off the ventilator but might need the tracheostomy. It’s hard to say without having all the details.

The devil is in the detail and with the information that you’ve shared, I wouldn’t deem your brother as being unweanable. But again, I would need to know more, I would need to know all the details in order to give you a conclusive answer. As I said, in my experience, in over 20 years working in ICU, very few patients in ICU are actually “unweanable”. And again, that is also in the context of that approximately 90% of patients in intensive care survive. You’ve got to see it in that context as well. If 90% of intensive care patients survive, well, would there be many patients that are deemed or labelled “unweanable”? No, probably not. The number of patients that are having a hard time coming off the ventilator is reasonably low in the intensive care context.

You got to look at this, intensive care is a niche, it’s a specialty. It’s a niche. When you look at Intensive Care at Home, what we are doing there, yes, we are dealing with some patients that are unweanable. And I explained that before why they are unweanable. It’s a niche within a niche. Okay. You can argue that the number of patients that might be unweanable is very low because we are talking about sub-segments of niches, okay, or a niche, like you say in the U.S. That’s what we’re dealing with here. Got to look at the context and you really have to look at the context that, how do ICUs manage their beds? They manage their beds by giving you negative news to lower your expectations so it’s easy for them to tell you the only option is to stop or withdraw treatment. That’s what we’re dealing with here.

I just want to see whether I can scroll back again to all of the comments that have been made. And I can’t unfortunately. T.S., I would really love to hear from you and find out more about your brother’s situation. Maybe you come back, and maybe you comment, maybe you watch the video after it’s been uploaded. If you watch it, then I would love to see your comments below the video so I can follow up then.

Anyway, I hope that this has shed some light today for you that unweanable is a term that’s not being used very often, and it shouldn’t be used loosely. It should be used very carefully and as you would’ve heard from today, very few people are unweanable, and like Modema said, do not give up hope. That’s the one thing you can control. Your mindset is the one thing you can control. That’s probably the only thing you can control, and just keep focusing on that. Just keep focusing on the things that you can control. Don’t worry on what you can’t control because you can’t influence on what you can’t control. You can only influence on what you can control. And that is often your thinking, your outlook on things that is the thing you are in control of, and you should be taking 100% ownership of that.

I’ll do these live streams, usually every week, every Sunday morning here in Melbourne, Australia, 10:30 Sunday, Melbourne Time, which is Saturday night, around 08:30 Eastern Time in the U.S., 05:30 Pacific Time.

I usually choose topics from the questions that we’re getting from our clients. I usually choose a topic there, but if you have any burning topics that you want to have addressed, please either send me an email to [email protected]. I’m happy to answer your questions. You can also come on live on the show. You can type your questions into the chat pad, or you can also dial in live on the show. If you want to dial in now, I’ll give you another chance. I’ve got a few more minutes left. If you’re in the U.S., you can call me on 415-915-0090. That is again 415-915-0090. If you’re in Australia, it’s 041-094-2230. In the U.K. it’s 0118-324-3018, that is again 0118-324-3018.

We do offer one-to-one consulting and advocacy for families in intensive care at intensivecarehotline.com.

We also have a membership for families in intensive care You can go and check out intensivecaresupport.org.

We also offer medical records reviews for intensive care patients.

When will we be in California? You mean for Intensive Care at Home? I’ve got A Mrtnz, you mean when will you be in California for Intensive Care at Home? What are you looking for? Tell me what you’re looking for and then I can tell you whether we can, for a chat. You can call now if you like, or you can call me after this, you can call me after we finish here, you can call now live on the show if you’re happy to talk in front of an audience. And if you want to talk to me privately, just call me on 415-915-0090, that is again 415-915-0090, that is a California number. Absolutely.

With Intensive Care at Home, we are providing intensive care at home nursing services for predominantly ventilated and tracheostomy patients in ICU. We’re helping them to take them home. At the moment we are servicing patients in Melbourne, Australia in Victoria, and also in Sydney, and in Brisbane, in Australia. We are not in the United States yet, but again, we are providing the consulting and advocacy for families in intensive care all around the world.

A Mrtnz says, “?That’s my brother.” Sure. Give your brother my number and he can call me. Sure.

If you’re in Australia and you are interested in Intensive Care at Home, we are funded by the NDIS (National Disability Insurance Scheme), the TAC (Transport Accident Commission), Victoria iCare, and New South Wales. Also, the Department of Veteran Affairs (DVA) and through some hospitals so you should definitely contact us. If you’re in the U.S., you should contact us as well. We have some partners in the U.S. that we can work with and help you also getting your loved ones home from intensive care. But more importantly, we can help anyone around the world with consulting and advocacy in intensive care.

Thanks, Modema for your kind words.

I think I might wrap this up here.

Share this video with your friends and families, give it a thumbs up, give it a like, subscribe to my YouTube channel for regular updates for families in intensive care, and click the notification bell. And again, share the video with your friends and families. Thank you. And give it a like, give it a like as well.

And I’m back again next Sunday morning, Melbourne Time, which is Saturday night. U.S, Eastern Time, 8:30, I’ll be back. I haven’t decided on the topic yet, but I’ve got many topics that I want to talk about.

Thank you so much for your support and for coming onto the live stream, coming onto the show.

I will talk to you during the week when I upload my quick tips and I will talk to you live again in a week’s time.

Thank you so much.

Take care.

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.

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