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Is a Tracheostomy Beneficial for Motor Neuron Disease Patients?

Good morning, good evening, good afternoon, wherever you are. Thank you so much for coming to another YouTube live stream for Intensive Care at Home today.

Today’s title is “Is a tracheostomy beneficial for motor neuron disease patients?” Before I dive into today’s topic, I also want to welcome our viewers that watch this on replay.

I also want to quickly talk about what makes me qualified to talk about today’s topic, “Is a tracheostomy beneficial for motor neuron disease patients?” My name is Patrik Hutzel. I am a critical care nurse by background. I have worked in critical care for nearly 25 years in three different countries, and I have worked in intensive care units, but also in the Intensive Care at Home space for decades now. I have a large degree of experience with motor neuron disease ranging back nearly as close as 25 years when I first started out in intensive care as well as with Intensive Care at Home in Germany. But I’ll come to that later.

So, what makes me qualified to talk about today’s topic? Like I said, I am a critical care nurse by background, having worked in critical care for nearly 25 years in three different countries. I worked as a nurse manager in intensive care. I worked with Intensive Care at Home as early as 2001. I am the founder and managing director of intensivecareathome.com where we also provide Intensive Care at Home services for motor neuron disease patients at home. So, I have first-hand experience looking after these patients, including looking after motor neuron disease patients with ventilation and tracheostomy as early as 2001 in Germany. But again, I will talk more about that in a minute.

With Intensive Care at Home currently, we are operating all around Australia. We’re operating in all major capital cities as well as in regional and rural areas. We are an NDIS (National Disability Insurance Scheme) approved nursing service. We are a TAC (Transport Accident Commission) approved service in Victoria, WorkSafe in Victoria, iCare in New South Wales, NIISQ (National Injury Insurance Scheme in Queensland), as well as the DVA all around Australia. We have also received funding through public hospitals, private health insurances, as well as departments of health.

I’m also the founder of intensivecarehotline.com, a consulting and advocacy service for families in intensive care. You can find out more information at intensivecarehotline.com.

With Intensive Care at Home, we are also providing Level 2 and Level 3 Specialist Support Coordination, NDIS support coordination, but we’re also providing case management for TAC, WorkSafe clients, as well as iCare and NIISQ case management.

So without further ado, let’s dive into today’s question and presentation. Also, I should say that too, if you look at Intensive Care at Home and our website intensivecareathome.com, there are case studies, there are testimonials. I can say without the slightest hint of exaggeration that our Intensive Care at Home service has saved many lives where people were stuck in intensive care or were doomed to approach their end-of-life, we managed to take them home from intensive care and provide Intensive Care at Home and prolong their life, improve their quality of life, and in some instances, improve quality of end-of-life.

So, “Is a tracheostomy beneficial for motor neuron disease patients?” Well, in short, yes. Before you say that I’m biased because I provide a service at home, well, I also encourage you to look at the research. There is enough research out there.

Before we look at the research, first off, some of you might recall Professor Stephen Hawking in the U.K., world-renowned scientist who lived for decades with a tracheostomy and a ventilator in the community until he died in his 70s, I believe a few years ago. So, there’s a very prominent/VIP real-world example that has benefited from a tracheostomy in the real world by being alive and contributing to society with all his research and contributions he made to society. So, very prominent example here and real-life case study in the eyes of the whole world really.

Other examples would be here in Australia, Professor Justin Yerbury who lived with a tracheostomy in the community and with nurses for many years. Unfortunately, Professor Yerbury passed away in October last year in 2023. But he was a big contributor to the MND research community. He was trying to find a cure for MND. His family unfortunately was severely affected by this horrible disease. So I encourage you to check out and google Professor Justin Yerbury. He used to run a very active Twitter account or now X account. So, you can see what he was up to with his research there.

I can talk about other MND clients that I can’t mention by name here that we are currently looking after in the community that have lived in the community for years with a tracheostomy ventilator and they actually want to live. There’s nothing surprising in there at all.

Then also, when I first got involved with Intensive Care at Home in Germany in the early 2000s, when we were pioneers in Germany setting up the first Intensive Care at Home service there, we’ve had a number of MND (Motor Neuron Disease) clients that go home from intensive care with a tracheostomy.

The simple argument was (A), Number one, patients and families need to be given a choice and not every MND patients wanted a tracheostomy that live in the community. Some opted not to have a tracheostomy and just carry on with BIPAP (bilevel positive airway pressure) or CPAP (continuous positive airway pressure) and with a PEG (Percutaneous Endoscopic Gastrostomy) tube but then they eventually passed away from an aspiration pneumonia, which is what a tracheostomy is actually preventing. A tracheostomy and a ventilator is preventing the issue of an aspiration pneumonia most of the time, not all the time. The risk, generally speaking, is much lower. That’s the bottom line.

So, when we started setting up Intensive Care at Home in Germany in the early 2000s, one of our first clients, they were MND clients going home from intensive care with a tracheostomy, ventilated, and they lived long times in the community instead of occupying an intensive care bed long-term, which would’ve cost the health insurance millions of euros in Germany. Whereas in the community, it cost half of that. So, win-win situation.

So then, when I first started with Intensive Care at Home in Australia in 2012, I was shocked to find out as part of my research that motor neuron disease patients in Australia, generally speaking, get denied a tracheostomy because of a lack of perceived options. Well, Intensive Care at Home is the option for someone with MND and a tracheostomy going into the community. Once again, cutting the cost of an intensive care bed by 50% and providing quality of life and in some instances, quality of end of life at home for MND patients. But the bottom line is patients need to be given a choice.

What I would recommend in a situation like this or leading up to it even, everyone should have an advanced care plan and should think about it. It’s not only for MND. It’s for any disease really. What do you want? If you’re getting sick, God forbid, and you need intensive care, you’re stuck in an intensive care unit, God forbid, and your options are limited or intensive care setting, your options are limited. Well, Intensive Care at Home might be an option. You will put yourself or your family members on a path if you have an advanced care plan and you know what you want and you document it in an advanced care plan.

So, lo and behold, I was shocked when we first got started with Intensive Care at Home in Australia in 2012 to see that for MND patients, it really wasn’t an option here. One might argue Australia remains 30 years behind certain developments. Look, I think we already have changed some of those options for MND patients because like I said, we are looking after MND patients in the community and we’re also involved in the advocacy for those MND patients because we know what’s possible. Just because some hospitals don’t think it’s possible to look after MND patients in the community with a ventilator and a tracheostomy, well, we’ve certainly proven it otherwise. Stephen Hawking in the U.K. has proven it otherwise for decades before he passed away. So, there’s no shortage of real-world examples of patients that have lived a good quality of life at home and are still living a good quality of life at home because they want to live.

So, besides me bringing up all these real-world examples, let’s also look at some of the research. One of the research papers is from Oxford, “Tracheostomy ventilation in MND. Many people living with MND are understandably concerned about the life-shortening effects of the progression of respiratory muscle weakness. Non-invasive ventilation is a highly effective way to manage many of the symptoms associated with this phase of MND and also increases overall survival. It is routinely available for all those who might benefit. However, some people consider an invasive method of breathing support through what is called a tracheostomy and ventilation machine. This is a more complicated undertaking and is not part of routine practice in most countries.”

This is from Oxford in the U.K., “Oxford team members led a recent review of the topic tracheostomy in motor neuron disease. It is important to discuss the issues around tracheostomy ventilation with your MND care team. We have meanwhile listed some of the common questions with brief answers, what is tracheostomy ventilation?” I think I’ve covered that in many of my videos. It’s basically ventilation through the neck with a tracheostomy tube.

Another question they bring up in this paper, “Would tracheostomy extend the length and quality of my life?” I argue absolutely yes, especially if you want that. But you need a service like Intensive Care at Home because the burden on a family to provide basically intensive care nursing work is simply too high and the chances of things to go wrong is pretty high.

So, you also need to consider things like, would I still be able to talk after a tracheostomy? Most of the time you can’t. But it’s similar to when you’re on BIPAP or on CPAP, very difficult to talk as well because your vocal cords are paralyzed.

So then, let’s look at the next research paper from Thorax. The editorial says, “Who will benefit from tracheostomy ventilation in motor neuron disease?” Again, the research paper said, “The decision when to recommend tracheostomy ventilation in motor neuron disease or in amyotrophic lateral sclerosis has always been difficult. At one extreme, it’s the view that when spontaneous ventilation or non-invasive ventilation is inadequate, a tracheostomy itself will save the patient’s life and lead to prolonged survival. The view has been more widely held in the U.S.A. than elsewhere. In the U.K. a common position is the opposite with a nihilistic attitude towards invasive respiratory treatment. The rationale behind this is that it’s too intrusive both for the patient and for the family and carers, and that once a tracheostomy is needed, palliative care is more appropriate.”

I agree that the view has been more widely held in the U.S. but also in European countries. Obviously, there’s the language barrier in European countries. Me having worked in Germany and being a native German speaker, I know the commonalities in English-speaking countries and in Germany. There’s certainly no nihilistic view in Germany. It’s a very optimistic view as a matter of fact, especially with Intensive Care at Home services in Germany, widely available, therefore making it a viable option for MND patients to go home with a cost-effective but also safe option.

I also agree that in the U.K., there’s a very nihilistic attitude towards invasive respiratory treatment, especially in the community. I strongly disagree that the rationale behind the tracheostomy for MND patients is too intrusive both for patients and the families and carers, and that once a tracheostomy is needed, palliative care is more appropriate. No, it is very inappropriate from my point of view and from my experience. There’s no need to take an nihilistic point of view when it comes to tracheostomy and MND patients. Like I said, from my experience, it improves the patient’s quality of life. It improves the family’s quality of life. It cuts the cost of the intensive care bed by around 50%, and it gives patients and families a choice, which is what healthcare is all about.

So, carrying on from this research paper from Thorax, “Not surprisingly, there has been a wide geographical variation in the proportion of patients who proceed to a tracheostomy.” I would agree with that.

“The issues surrounding tracheostomy ventilation were openly discussed with each patient who might benefit from it.” Yeah, of course. It is very important that you do discuss with your patients whether it’s beneficial or not. The research paper further continues out of 76 subjects, 38 refused, and that’s okay. So, half of the patients refused, and that’s okay too, but that means half of them didn’t refuse the tracheostomy. So, it really comes down to what is your choice?

It further on continues, “Unfortunately no further data are provided by these patients to compare their outcomes in terms of quality of life with the 38 who underwent a tracheostomy. But their mean survival was only 0.83 months.” Well, I tell you why there was no survival because I would imagine a lot of those patients were shipped into the community or discharged in the community and didn’t have Intensive Care at Home. Of course, they would die. Of course they would.

So, to illustrate that, we had an inquiry a few years ago from an MND patient in New South Wales, and the client was under the impression that there would be no funding for Intensive Care at Home. By the time the client went home, he had 24-hour support workers looking after him, and of course he passed away within a few weeks and he passed away because of a medical emergency that could not be managed by support workers. No surprise. I’ve made countless videos about that. So, the mean survival rate will be high if you have Intensive Care at Home and you can live with intensive care nurses at home, which again is a win-win situation because it cuts the cost of an intensive care bed by around 50%.

Now, this research paper continues on, it says, “Interestingly, over half of those who underwent the tracheostomy do so during an acute severe chest infection in which non-invasive ventilation was either ineffective or not indicated. These patients were transferred from endotracheal intubation to tracheostomy ventilation. The indications were otherwise untreatable ventilatory failure or the need for access to tracheobronchial secretions during and after the infection. The mean survival after tracheostomy was 10.76 months, which was similar to the mean survival when tracheostomy was carried out electively.”

So again, I can give a very good example here. I agree with the research paper that most MND patients who end up with a tracheostomy do so during a chest infection/pneumonia. Now, let me explain this to you. If an MND patient at home is on BIPAP or CPAP, non-invasive ventilation, and if they’re having a PEG tube, which most of them do at that stage, they are at super high risk of aspiration, meaning that the BIPAP puts a lot of pressure on their stomach. If they’re getting nutrition through the PEG tube, there’s a very high risk of vomiting and therefore, aspiration. Most MND patients have lost the ability to swallow. That puts them at super high risk for aspiration pneumonia or chest infection, which is what happens in many of those cases. Many MND patients have died of chest infections, pneumonias in those situations. So then if they do get better, the choice is to put in a tracheostomy, which is actually what exactly happened to one of our clients that we’re currently looking after at home with MND.

I remember it would’ve been in mid-2019 when a family member of an MND patient reached out to me saying, “Look, my family member is on BIPAP at home for MND. He’s got a PEG tube and I do believe we are running a very high risk here of having an aspiration pneumonia very soon because of the BIPAP and PEG feeds.” Lo and behold, she asked me, “Oh, if we needed a tracheostomy for my family member, would you be able to take him home from ICU?” I said, “Absolutely, yes,” and that’s what we did. He did end up going into ICU, I think by around August, with an aspiration pneumonia just as the client’s family member predicted. He ended up with a tracheostomy just as this client had documented in his advanced care plan.

Then, he ended up in ICU and we took him home probably by the end of October. So, a couple of months in ICU before we had everything organized. He’s been home ever since. That would’ve been in October 2019. Here in Australia, this gentleman is NDIS funded for 24-hour critical care nurses at home, freeing up an ICU bed and more importantly, cutting the cost of an ICU bed. But even more importantly, providing quality of life for this gentleman at home and his family. He’s got a young family and of course he wants to be at home with his family. So, I hope that gives you a good understanding of what is possible.

If you are doing your research, you would already know that unfortunately, BIPAP, PEG tube is a high risk for aspiration. Then, if that happens, are you thinking about a tracheostomy?

So again, the research paper further continues, “The indications for elective tracheostomy ventilation were either an inability to provide adequate ventilatory support non-invasively, which is BIPAP or CPAP, or the need to protect the airway despite the use of manually assisted coughing, which would be a cough assist. It has been demonstrated that non-invasive systems can almost invariably adequately ventilate the subject. It is a defective swallow or cough that usually leads to the need for a tracheostomy, apart from the convenience of being ventilated through this route. If respiratory support is needed virtually or completely continuously”, which is the case for most MND patients.

Now, let’s quickly look at another research paper from the “Tracheostomy Motor Neuron Disease from the National Library of Medicine.” It says, “Tracheostomy associated ventilation for the respiratory insufficiency caused by MND or also known as amyotrophic lateral sclerosis is a complex issue with practical, ethical, and economic dimensions. This article considers the current prevalence of tracheostomy in MND, the evidence for its benefit, both for survival and quality of life, and the practicalities of its implementation. The decision to request invasive ventilation support is amongst the most challenging for those living with MND. Neurologists should be prepared to discuss this option openly and objectively. We suggest a framework for discussion including withdrawal of therapy.”

Yes. I agree that all options need to be on the table. Like I said right from the start, anyone should be given all options on the table. It’s not a one size fits all, but like we’ve just seen in the previous research article, about 50% of the surveyed patients chose to have a tracheostomy. So, it is very important that all aspects of treatment need to be put on the table, including palliative care, including continuing with BIPAP or CPAP but the risk of BIPAP or CPAP causing an aspiration pneumonia is very, very high leading to death at some point.

Also, if you wanted to join me here and ask questions, you’re more than welcome to type your questions into the chat pad. Keep them to today’s topic if you can. We might have time later to take questions or if you have any questions in relation to, “Is a tracheostomy beneficial for MND patients?”, please type them into the chat pad. Or if you want to talk to me about this topic later, you can use the link that I just posted in the chat pad. We might also have time a bit later to look at other questions that have come in during the week.

Now, let’s look at more practical issues in terms of what do you need to do if you have a tracheostomy with MND and you’re stuck in a hospital, you’re stuck in ICU? In Australia in particular, you should be reaching out and get an NDIS plan, and we can help you with that. We also provide Level 2 and Level 3 NDIS support coordination.

Now, you might be an NDIS Support Coordinator watching this, and your NDIS participant might have motor neuron disease and you don’t know what’s next. What are the right steps? How can you help them to make the right decisions for them? You could use this video as a starting point. You can point them to this video as a starting point. But the next steps in a situation like that is to get on the NDIS and a NDIS support coordinator, get an NDIS plan for 24-hour nursing care, especially if you wanted a tracheostomy. But even if you’re at home on BIPAP or CPAP with a PEG tube, that still requires an intensive care nurse, 24 hours a day.

For example, last year we heard of a client here in Ballarat, in Victoria in Australia, was diagnosed with MND. We only heard about it after the client passed away. Apparently, he was told there are no options. He’s going to die. The only option for him would be palliative care. Apparently, he was sent home with a BIPAP machine with no professional help. Apparently, he passed away within a couple of days of going home. This is one of the shocking stories we are aware of, and we must do better than that. We must do a lot better than that, and we can’t really just turn a blind eye on these things, especially since there are options out there.

So, just be mindful that if you are in a situation like that, don’t let the doom and gloom from hospitals, potentially even from MND associations or from neurologists, don’t let that cloud your view of reality, because the reality is you can have a tracheostomy. There are services like Intensive Care at Home who can help you, and there is NDIS funding that can help you to go home with 24-hour nurses. More importantly, intensive care nurses, especially when it comes to BIPAP, CPAP, PEG tubes, tracheostomy, and mechanical ventilation, you will need intensive care nurses, 24 hours a day, and that is evidence-based.

The reason it’s evidence-based is if you go to our website intensivecareathome.com. You will find a section called the Mechanical Home Ventilation Guidelines. In those guidelines who are based off nearly 30 years of intensive care nursing in Germany and now over 10 years of intensive care nursing in Australia, you will find that the evidence is overwhelmingly saying that only intensive care nurses or critical care nurses with a minimum of two years critical care nursing experience are allowed to look after ventilated and tracheostomy patients at home, which includes MND, but it also includes patients on BIPAP, CPAP, PEG tubes. Not even a registered nurse can provide that service in the community safely because it is intensive care. It requires intensive care nursing skills. So, it is common sense to use intensive care nurses only in the community for this type of care.

Now, let’s just say you are an NDIS Support Coordinator watching this, or you are a patient with MND and you’re wondering what’s next? Well, once again, if you are an NDIS support coordinator, a nursing assessment needs to take place, which we can help you with, especially nursing assessment. But you also will need a doctor’s letter. You need an OT assessment that will lead you down the track of 24-hour nursing care for your MND participant or for yourself if you’re watching this, or for your family member if you’re watching this. So, I hope that really sets the scene here about (A), some practical examples, but also some practical next steps.

If you don’t know how to get on the NDIS, please reach out to us. We have our own NDIS Specialist Support Coordinator who can help you with getting your NDIS plan right. Not only for MND but anybody else watching this who needs an NDIS plan, needs a review of the NDIS plan, doesn’t have any nursing, but for example is at home on a ventilator, tracheostomy, Home TPN (total parenteral nutrition), and all of that. We can help you with all of that.

So now, with all of that said, do you have any questions in regards to, “Is a tracheostomy beneficial for motor neuron disease patients?” Please type your questions into the chat pad or use the StreamYard link that I put in there, and you can ask me live on the StreamYard link.

You might be watching this, you are in a different country, you might be in the U.S., Canada, you might be in New Zealand, you might be in the U.K. Do not give up and ask for the right questions. There are services in other countries as well, and we can help you privately with Intensive Care at Home if you’re in the U.S. or in the U.K. So, please reach out to us as well.

You can reach out to us at intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].

Like I said, currently with Intensive Care at Home, we are operating all around Australia in all major capital cities as well as in regional and rural areas. We are providing Level 2 and Level 3 NDIS support coordination as well.

So, let’s go to some questions that have come in during the week, or type your questions into the chat pad, or join me live on the stream here. Let’s look at some questions.

The first question today comes from Vicky who says, “Hi, Patrik. My husband received several sedatives and he’s not waking up after two weeks being off them which means they have been discontinued for two weeks.” This is a common question we’re getting quite frequently. Vicky, one of the things you need to look for is (A), what sedatives has he been on? How much of them? The quantity? For example, if he was on Propofol, Propofol is short-acting so as soon as Propofol is switched off, he should be waking up. If he was on Midazolam/Versed for long periods of time, Midazolam or Versed is long acting, i.e., It might take a lot longer to wake up. Number two, if he had sedatives, he probably was also on opiates such as morphine or fentanyl. That also often causes delay of waking up.

Next, sometimes when patients are in an induced coma, they’re also paralyzed with medications such as Rocuronium, Vecuronium, Cisatracurium. Any of those medications often trigger the use of even more sedatives than opiates, and that could also cause a delay of waking up.

Now, the other thing that you haven’t mentioned to me is how long was your husband in an induced coma? Was he in there for a few days? Was he in an induced coma for many weeks? Also, is he still ventilated? Is he now having a tracheostomy for example? Could he be getting mobilized? Would that help him to regain some of his consciousness? So, you’ve got to look at all those things on a bigger picture scale.

Next, if he’s not waking up, have they done an MRI scan of the brain or a CT scan of the brain? Next, have they done an EEG? Have they done a referral to a neurologist to look at why he’s not waking up? Next, is he in kidney or in liver failure? Because if he’s in kidney or in liver failure, that could also cause a delay of waking up because sedatives and opiates can’t be metabolized or can’t be washed out of the system because of kidney and liver failure. Next, is he still fighting an infection, for example? Has he been lying in bed for weeks or months on end potentially? Which brings me back to mobilization. If he has a tracheostomy, can he be mobilized? Will that help him to wake up? Imagine you’re lying in bed for weeks on end, what would that do to your brain? Just think about that. Just think about that.

So, I want to leave it there today unless you have any questions. If you do have any questions, please type your questions into the chat pad or join me live on the StreamYard link here. You can talk to me directly here because if not, I am going to wrap this up today.

I will be doing another YouTube live again next week around the same time. Next week’s topic will be again, “Ask me anything”, and you can ask me anything. You can still ask me anything today, but I do want to wrap this up to today.

Now, like I said, if you are in a situation like that, if you’re stuck in ICU or your loved one is stuck in ICU and you need help with Intensive Care at Home, please reach out to us at intensivecareathome.com. Call us on one of the numbers on the top of our website, or I send an email to [email protected].

Tom, nice to see you. I really hope that you and your family are well. I hope you’re doing well with your son at home, and really nice to see you and hear from you. Lovely.

Now, with Intensive Care at Home, we are also currently looking for critical care nurses with a minimum of two years critical care nursing experience. We want to hear from you. Now, ideally, you have also completed a post graduate critical care qualification. We currently have jobs in Melbourne, Sydney, Brisbane, Albury, Wodonga, in Bendigo, in Country Victoria, as well as in Warragul. We absolutely want to hear from you.

Now, if you’re an NDIS support coordinator and you’re looking for nursing care for your participants or for more funding because you don’t know how to advocate for nursing care, please reach out to us. We can help you with insights as well as with a specialist NDIS nursing assessment. If you are stuck at home already with insufficient support, insufficient funding, please reach out to us. We want to help you. Or if you’re stuck in a hospital in ICU and you are considering Intensive Care at Home, please reach out to us. We can help you including an NDIS plan.

Now, also, if you’re an intensive care specialist or an ICU consultant, we are currently also expanding our medical team. We want to hear from you. If you are an ICU specialist and you have bed blocks in your ICU, which I know you do, I encourage you to reach out to us as well. We can help you eliminate your bed blocks, but more importantly, we can improve the quality of life and sometimes quality of end of life for your patients and their families, and you won’t even pay for it.

If you are a hospital executive watching this, we also want to hear from you because again, we want to help you eliminate your bed blocks in ICU and ED.

Once again, our website is intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected]. Once again, if you are in the U.K. or in the U.S., we can help you there privately as well. Please reach out.

If you like my video, subscribe to my YouTube channel for regular updates for Intensive Care at Home and families in intensive care, click the like button, click the notification bell, comment below what you want to see next, what questions and insights you have, and please share the video with your friends and families, share them far and wide.

We’ll be back again during the week with my quick tip videos and Intensive Care at Home videos. I wish you and your families all the very best, and I’ll see you again later in the week and next week on the YouTube live.

Take care for now.