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Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults & Children with Tracheostomies and where we also provide tailor made solutions for hospitals and Intensive Care Units whilst providing quality services for long-term ventilated patients and medically complex patients at home, including home TPN.

In last week’s blog, I talked about,

HOW MUCH DOES IT COST TO BRING A PATIENT ON LIFE SUPPORT HOME AND BE CARED FOR AT HOME?

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

https://intensivecareathome.com/how-much-does-it-cost-to-bring-a-patient-on-life-support-home-and-be-cared-for-at-home/

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

How Long is A Patient with a Tracheostomy Going to Live in the Community? Live Stream! 

Hello and welcome to another Intensive Care at Home livestream. Thank you so much for watching this either live or as a replay. I want to welcome you and thank you for your attention and your support.

Generally speaking, if you like my videos, subscribe to my YouTube channel and give the videos a like, give it a thumbs up, click the notification bell, comment below questions, insights, what you want to see, keep it engaging so I can keep making these videos for you that are of interest for you. Every video that I’m making every day is a question that we are getting, and we answer it so that you can get the most value out of it. So, it’s all about making content that’s user-friendly and driven by the actual viewer.

Now, today’s topic is, again, a question that we get quite frequently, and the question is, “How long is a patient with a tracheostomy going to live in the community?” That is a great question and it’s a question we get quite frequently.

Now, before we go into today’s topic, you might be curious about what makes me qualified to talk about today’s topic or about the topics that I talk on this YouTube channel in general. So, I’m a critical care nurse by background. I have been working in critical care/intensive care for over 20 years in three different countries. I have also worked as a nurse unit manager for over five years in intensive care. I am the founder and managing director of Intensive Care at Home, which is a nursing service where we are providing Intensive Care at Home nursing for predominantly long-term ventilated adults and children with tracheostomy. But we also provide Intensive Care at Home for adults and children with a tracheostomy that are not ventilated. We also provide Intensive Care at Home nursing for clients, adults and children that are BIPAP (bilevel positive airway pressure) or CPAP (continuous positive airway pressure) ventilator dependent without a tracheostomy. We also provide services for patients on home TPN (total parenteral nutrition), home IV fluids, home electrolyte infusions such as potassium or magnesium and IV antibiotics.

So currently, we are operating all around Australia in all major capital cities, but also rural and regional areas. We are a TAC (Transport Accident Commission) approved community nursing service provider in Victoria. We are an NDIS (National Disability Insurance Scheme) approved nursing service provider all around Australia as the NDIS is a federal funding scheme. We are an iCare approved provider in New South Wales, and an NIISQ (National Injury Insurance Scheme) approved service provider in Queensland as well as we are a DVA approved, Department of Veteran Affairs approved service provider. We have also received referrals from public, private hospitals. We have received funding through public hospitals as well as departments of health.

So, on top of that, I have also been part of setting up Intensive Care at Home in Germany about 25 years ago before I set it up here in Australia. So, I come what I believe with a wealth of knowledge in this space, “How long is a patient going to live in the community with a tracheostomy?” It’s been what I’ve been doing for the last 25 years, serving clients, serving the community, serving our amazing team, of course, at Intensive Care at Home. So, I have a wealth of knowledge there.

Now, I am also the founder of intensivecarehotline.com. With intensivecarehotline.com, we are consulting and advocating for families in intensive care  all around the world, and we have been consulting and advocating for clients there all over the world for the last 10 years. We have been getting amazing results for our clients. We’ve been saving some lives with our consulting and advocacy for families in intensive care, and we’re removing all the myths. We counteract the negativity of intensive care teams and making sure that clients, families in intensive care in particular get perspective and are in a position to make informed decisions, get peace of mind, control, power and influence.

So, let’s come to today’s question, “How long is a patient with a tracheostomy going to live in the community?” Now also, if you have questions in regards to today’s subject, type any questions into the chat pad or if you’re watching this on replay, you can also comment below and then I will get back to you with an answer.

How long is a patient with a tracheostomy going to live in the community? Well, that is a great question. Let’s just do a quick summary of everything that we know about a tracheostomy already. Tracheostomy is a device that, it’s an artificial airway that patients usually get in intensive care after they’ve been mechanically ventilated with a breathing tube after about Day 10 to 14 of mechanical ventilation with a breathing tube.

If a patient can’t be weaned off a ventilator, a tracheostomy is necessary. If a patient then can be weaned off the ventilator but can’t be weaned off the tracheostomy, then the next steps are imminent. They often can’t leave intensive care because of the tracheostomy, because it’s an artificial airway and obviously that artificial airway needs to be maintained, 24 hours a day, because if someone can’t breathe, if an artificial airway blocks that could be equal to a patient dying. So, patients often can’t go to a hospital ward right away.

If they do go to a hospital ward after the ventilator has been weaned and they’re there with a tracheostomy now, if they do go to a hospital ward, they need one-to-one nursing still. They need one-to-one nursing with a nurse that knows what to do with the tracheostomy, that knows how to change the dressing, that knows how to suction, that knows how to manage a tracheostomy balloon or a tracheostomy cuff, assuming that the patient has a cuffed tracheostomy.

The nurses need to know how to change an inner cannula. The nurses need to know how to change the whole tracheostomy tube in case of an emergency. The nurses need to know when to administer a nebulizer, whether it’s a saline nebulizer or a Ventolin or Atrovent, or any other nebulizers for that matter. The nurses need to know how to keep a tracheostomy clean and patent. So, it’s not a skill that can be learned overnight. It’s a skill that is usually learned over many years of intensive care nursing experience. When patients do go to a hospital ward or a hospital floor with a tracheostomy, they still need intensive care nurses with a minimum of two years ICU or at least emergency department experience. They basically need critical care registered nurses.

So, where does that leave us when we’re asking the question today, “How long is a patient with a tracheostomy going to leave in the community if even on a hospital ward patients can’t be looked after by general registered nurses without ICU or without emergency department experience?” Well, it leaves us with setting up Intensive Care at Home, making sure that patients can live safely with a tracheostomy at home for a long time to come or even doing things such as removing a tracheostomy at home if a patient doesn’t necessarily have to be weaned off a tracheostomy in a hospital environment. We have certainly weaned adults and children off the tracheostomy in a home care environment. So, that can be done at home with Intensive Care at Home.

So, we are also a third-party accredited nursing service and NDIS accredited for Intensive Care at Home. No other service in Australia as of 2023 as far as I’m aware, has achieved a similar level of accreditation. So, I can confidently say that we are looking after the sickest and highest acuity clients in the community in Australia because we are half the intellectual property, we have the teams, we have the know-how to take patients home from intensive care directly, which again includes patients with a tracheostomy.

Now, to talk more about how long can a patient with a tracheostomy live in the community? So it really depends. They can live for long periods of times, sometimes for decades if they have the right support at home. The right support at home means Intensive Care at Home, anything less than that is simply dangerous and it’s not evidence-based.

So, what do I mean by that? If you look on our website at intensivecareathome.com, you look at the Mechanical Home Ventilation Guidelines, those home ventilation guidelines clearly say that only critical care nurses with a minimum of two years ICU or emergency department experience are safe to look after tracheostomy or ventilated adults and children at home, 24 hours a day, because that’s what is needed, if someone has an artificial airway and that’s a tracheostomy or a tracheostomy and a ventilator, it also includes non-invasive ventilation such as BIPAP or CPAP.

But now it all depends. We have looked after patients at home with tracheostomies that went home for end-of-life care and they might’ve been at home for anything from a few days to a few weeks to a few months, say up to 12 months. Other tracheostomy clients that we’re having are not in palliative care. They have comorbidities, they have long medical histories, they have disabilities, but that doesn’t mean they are under palliative care. They could live for a long time to come, assuming they have 24 hours intensive care nurses at home who know what to do with the tracheostomy, who know how to keep it safe, know how to keep it patent, to know how to keep it free of infection, to know how to change an inner cannula. It’s an intensive care nursing skill. It can’t be taught to support workers, for example. That’s like saying, well, we’re flying the airplane tomorrow with a cabin crew and not with a pilot. We’ll just run them through a quick training.

So, that also leads me to a point, I already mentioned that clients in the community can live for months, years, decades with the tracheostomy if they have the right level of support. But here, I also need to give three examples where our clients have died because they didn’t have the 24-hour intensive care nursing support at home with a tracheostomy.

So, let me run through a couple of case studies here. So, we were looking after a five-year-old boy at home with a tracheostomy. He had a tracheoesophageal fistula and he spent most of his life in hospital and in ICU in particular. Then eventually, he went home with our service. We were only funded for night shifts and we weren’t funded for day shifts. During the day, parents and support workers were looking after this little boy and we shared our grave concerns at the time saying that we are very happy to do the night shifts, but keep in mind that the minute we are leaving here, this child won’t be safe, and a life will be hanging at a thread.

No one believed us saying, “Well, you don’t know what you’re talking about.” I made reference to the evidence-based Mechanical Home Ventilation Guidelines who clearly once again say that in order to provide Intensive Care at Home for tracheostomy/ventilated adults and children, you need to have critical care nurses, 24 hours a day, who have a minimum of two years critical care nursing experience. What happened in this instance is that the child passed away during the day just as we predicted because the people on site, whether it was parents or support workers, could not manage a medical emergency with a tracheostomy. By the time the ambulance arrived, the child had already passed away.

The second example, and this child could have lived for longer, no guarantee of course for how much longer, but why would you not make sure you’re maximizing resources for a five-year-old boy who’s just come out of ICU for really after many years in there and for the first time he could mingle with other kids, he could go to kindergarten. His quality of life had improved dramatically.

Another example is we were looking after a 17-year-old girl who was ventilated with a tracheostomy. Similar scenario, the NDIS funded night shifts, but not day shifts for critical care nurses. We took this particular young girl home from ICU. Once again, we made our advocacy pleas and said, “Look, this girl’s life is at risk when we’re not there.” Unfortunately, our pleas were ignored. Unfortunately, this child passed away as well during the daytime when we were not there because once again, families or support workers or potentially even a general registered nurse could not manage a medical emergency with a tracheostomy. So, I argue that we are the only service in Australia that’s really trying to bring standards into the space of Intensive Care at Home because the examples that I’ve just given you, it’s the Wild West and people are dying. The NDIS in particular is busy trying to sweep it under the carpet, that these deaths the NDIS has been responsible for.

Now, another example was we had another client with a tracheostomy, 60-year-old lady who suffered from a stroke or who had suffered from a stroke and she ended up with a tracheostomy, going home initially. The NDIS funded one hour in the morning and one hour at night nursing care, again violating the Mechanical Home Ventilation Guidelines that once again are evidence-based and clearly not suggest but demand that there must be 24-hour CCRN, critical care registered nurse support for patients with a tracheostomy or with a ventilator, very similar to a hospital. You can’t discharge patients from a hospital and giving them less support, that is doomed to fail. So, this particular lady ended up in hospital. She was sitting on a ward and once again, she didn’t have one-to-one nurse to patient ratio with a critical care nurse as is evidence-based. She died from a respiratory arrest as well. She didn’t have one-to-one nursing. I’m not surprised that all of those clients unfortunately have passed away. Once again, they were all NDIS participants, and the NDIS is busy trying to sweep it under the carpet and not taking the responsibility for those deaths. Whereas clearly it has been the responsibility of the NDIS that these clients have passed away.

So, a change in practice is urgently, urgently needed so that there are no other NDIS participants or any other clients, for that matter, are passing away, and that more and more patients in intensive care, long-term patients in intensive care can improve their quality of life and in some instances, quality of end of life at home instead of spending weeks and months in intensive care, never going home.

On top of that, bear in mind, families are living in ICU and nobody’s winning. ICU’s need an empty bed. By providing Intensive Care at Home, we’re improving quality of life or quality of end of life for patients and their families. We are improving the bed flow in ICU, we’re freeing up intensive care beds. Lastly, we’re cutting the cost of an intensive care bed by around 50%. So win-win, everyone’s winning with our solution.

So, coming back to our original questions, now that we know that if you don’t have 24-hour intensive care nurses at home, you won’t live very long in the community with a tracheostomy. That’s for sure. If you do live in the community with a tracheostomy, you can live once again for many years, for many decades potentially depending on your medical history or the disability that you’re having. The longest that I’ve known someone living in the community with a tracheostomy and a ventilator is for about nearly 40 years now, four zero. So, it’s definitely possible if you have the right support. You look at VIP cases such as Stephen Hawking who lived also for decades on a ventilator with a tracheostomy. Clearly, he would’ve had the support that’s needed to keep him alive and have a good quality of life. We have other clients, they’ve now lived with a tracheostomy for about 2, 3, 4 years, and they can live with that tracheostomy for much longer to come. But it all comes down to having that 24-hour intensive care nursing support at home so that it’s safe.

Also, please keep in mind that hospitals don’t want the patients to come back to hospital. So, that’s why an intensive care substitution service in the community makes a lot of sense so that hospital beds can be kept empty predictably. So, please keep all of that in mind. There are no hard and fast rules how long someone can live in the community with a tracheostomy. However, once again, having the 24-hour intensive care nurses coming into your home will increase the chances dramatically that (A), you can live for a long time to come, and (B), you’re keeping the hospital bed empty and (C), is improving your quality of life dramatically.

Now, we have some clients that have a tracheostomy and they participate in day-to-day life. They go to school, they go to kindergarten, they might go to Uni for work or go to other jobs or work from home. A lot more is possible than you think there is with a service like ours. Also, for some clients, we had one client many years ago now, she went home from hospital with a tracheostomy. She was intermittently ventilated for palliative care. She went into palliative care and we provided services to her for about a good 12 months before she passed away. She was also on chemotherapy, had breast cancer. She also was involved in a very unfortunate motor vehicle accident, which is why she ended up with a tracheostomy. Then, we were providing palliative care at home, which was her wish. She wanted to not go back to hospital. She wanted to die at home.

So, it’s not a one size fits all. It is definitely not a one size fits all. Some patients also may have a tracheostomy for throat cancer. They may even have a laryngectomy where parts of the larynx are being removed. That might also lead to a lifelong tracheostomy. Some tracheostomies are definitely temporary, which is a good thing. Some will be permanent, some will be temporary, depends on your unique circumstances. Again, reach out to us if you do want to know more how we can help you to remove your tracheostomy.

Also with kids, for example, I also need to focus on kids for a moment. We’ve had a number of kids at home now with tracheostomies and two of those kids went home from PICU, from the pediatric ICU for about six months initially on CPAP with a tracheostomy. They got weaned off the CPAP and then after about six months, those kids got decannulated, i.e., the tracheostomy got removed and they’re now living very good lives without further need of a tracheostomy. They were both premature babies and they had lung disease, which is why they needed the tracheostomy for the first two to three years of their lives. So, there’s some very positive examples out there when it comes to tracheostomy removals in the community as well with our service, Intensive Care at Home.

Now, I think that’s all I wanted to share about, “How long is a patient with a tracheostomy going to live in the community?” I now want to move on and answer some questions that came in during the week. Some of them are Intensive Care at Home related, some of them are intensive care related. Let me go to my emails and read out some of your emails. If you have any questions, please type them into the chat pat so I can get to them. Any questions, intensive care or Intensive Care at Home related, I am willing to answer.

Let’s just quickly look through my emails. This is from Tracy who says, “My mom is in and out of ICU with too much COPD (Chronic Obstructive Pulmonary Disease) and high CO2.” CO2 means carbon dioxide. “It places her on BIPAP in ICU, however, they might have to put her on the ventilator with a breathing tube and the outcome may be catastrophic, which is this is what the ICU team is telling me. What should I do if it happens again?” Well, if your mom goes into ICU with BIPAP, with COPD and high CO2 on a regular basis, you should once again consider Intensive Care at Home. You should consider Intensive Care at Home so that she doesn’t end up in ICU because if she had BIPAP at home, have a critical care nurse at home, 24 hours a day, have a team of critical care nurses at home, we can keep your mom out of ICU predictably.

Whether the outcome will be catastrophic or not, if she goes on a ventilator with a breathing tube that’s up for debate. ICU teams are always negative. They’re always highlighting the doom and gloom. They’re always highlighting the negative. So, that is all speculation for me. I think your best bet is here to get your mom BIPAP at home so that she doesn’t go back into ICU because if the BIPAP is managed well at home, she won’t need to go into ICU and she won’t even be at risk of intubation and then potentially tracheostomy and so forth.

One way or another, this is all manageable at home. We have clients at home on BIPAP with Intensive Care at Home, whether it’s adults or children, and we keep them at home predictably because we manage their CO2 and we manage their BIPAP at home, which is similar to what they would get in ICU anyway, so I hope that helps Tracy.

The next question comes from Aisha. Aisha says, “I want my husband home with BIPAP support and critical care support.” That’s very similar to the previous question that we had from Tracy. Aisha, I can see you’re actually in Australia, so what you need to do is you need to contact us pretty quickly so that we can get your husband home from ICU on BIPAP. If your husband is below the age of 65, the NDIS might be the funding body to contact. But you should contact us first because we can help you with an NDIS application. We can help you with intake to the NDIS. We also have an NDIS support coordinator now, or an NDIS specialty support coordinator who can help you with funding and who can help with the advocacy. Or if your husband doesn’t qualify for NDIS because he’s older than 65, you should also contact us to see whether we can access funding through public hospitals, private hospitals, private health funds, any other compensation scheme. But one way or another, this is all possible to get your husband home with BIPAP and 24-hour critical care nursing support. That is bread and butter for us.

If you are an NDIS support coordinator watching that, watching out my video here, and you might know of your client having BIPAP CPAP and you want to get your client home or your NDIS participant home, but you’re not sure about the funding or if you need an NDIS nursing assessment, we can do all of that for you. So, one way or another we can help you.

If you’re a case manager, if you’re a hospital executive, if you’re an intensive consultant, ICU specialist, if you are a nurse manager in ICU, if you’re a hospital executive, please reach out to us. We can help you manage your ICU beds more efficiently. Also, you can partner with your consumers what’s in the best interest for them, and you can partner with consumers, and you can show to be proactive on getting them home. You can show to be innovative as well and safe by the same time.

Now, here’s another question from Philip. Philip says, “My mom has been in hospital for four weeks on high flow nasal cannula after pneumonia, and she has pulmonary fibrosis. The hospital wants to send her to a long-term acute hospital specializing in respiratory rehab. Will that be better than a hospital? Should I fight to keep her in hospital? The hospital is close to my house while LTAC is not. I have heard mixed reviews. Please help. From Philip.” Well, Philip, it’s crystal clear here that you don’t want your mom to go to LTAC, so you must be in the United States. You don’t want her to go to LTAC and you want to keep her in hospital.

Ideally wean her off the high flow nasal cannula after the pneumonia and then go home because then going home will be so much easier. If she has pulmonary fibrosis, she might be oxygen dependent for a bit longer. She might also be needing a lung transplant depending on the age of your mom, I don’t know. It’s certainly something you could explore whether she needs a lung transplant with pulmonary fibrosis.

Will LTAC be better than hospital? Definitely, no. Definitely, no. We haven’t seen many good LTACs, if any. You should fight to keep her in hospital. You should fight to get her off the nasal cannula and the high flow nasal prongs and then take her home. If she can’t come off the nasal cannula after pneumonia, once again, maybe she does need Intensive Care at Home. Because the hospital is close to your home and LTAC is far away, you should definitely not go to LTAC. You also heard mixed reviews, of course. Look up the online reviews for an LTAC. It will tell you everything that you need to know. It’s an absolute shocker.

So, I think that’s where I want to leave it today. I do want to wrap this up for today. I will do another YouTube livestream next week. The next YouTube livestream is how long is a patient with a tracheostomy and a ventilator going to live in the community next Sunday, the 24th of September 10:30 AM, Sydney and Melbourne time, which is 8:30 PM on a Saturday Eastern Standard time in the U.S., 5:30 PM Pacific Time in the U.S.

Now, once again, if you do have a loved one in intensive care and you want to go home on a ventilator with a tracheostomy, if you’re not ventilated, but you have a tracheostomy, please contact us. We can help you to take you home or your loved one home from ICU or from a respiratory ward or from any other ward where they have tracheostomies or ventilation requirements.

If you need BIPAP CPAP ventilation at home, please contact us as well. We can help you with nursing support here too. If you need home TPN, home IV electrolyte infusion such as potassium magnesium, home IV antibiotics, please contact us as well. If you are an NDIS support coordinator looking for a solution for your NDIS participant, we can be the solution. We can also help with NDIS advocacy with nursing assessments, but also with general advocacy. We’ve done it many times for our clients. We wouldn’t be in business if we didn’t know what to do about the advocacy with the NDIS or any other funding body for that matter. We are also having our own NDIS support coordinator now, so if you want to choose your own NDIS support coordinator through us, please contact us as well. If you want to go home with other funding bodies or if you don’t know how to go about funding, please contact us. We can help you.

If you’re a hospital executive, ICU nurse manager, ICU consultant, even if you’re a CCRN and you know of patients that want to join our service, please let us know. Again, we can help one way or another.

If you are at home already on a ventilator tracheostomy and you don’t have sufficient support or you’re not happy with your current support, please contact us. We can help you one way or another.

If you are a critically care registered nurse with the minimum of two years ICU experience, we currently have job opportunities for in Sydney, Melbourne, Brisbane, that we want to hear from you if you have a minimum of two years CCRN experience, ideally with a postgraduate critical care qualification. Again, if you’re an ICU specialist, staff specialists, we want to hear from you. We are currently also expanding our medical team as well.

If you’re a hospital executive and you know that you have bed blocks, we can make it safe for your patients and families to go home and you can be seen as partnering with them. One of the quality standards for a hospital accreditation is partnering with consumers, and I believe we are very strong in that aspect.

Next, if you do like my videos, I recommend you subscribe to my YouTube channel. You click the like button, you click the notification bell, you share the video with your friends and families, and you comment below what you want to see next, or what questions and insights you have from this video.

We also have a membership for families in intensive care and Intensive Care at Home at intensivecaresupport.org. Go and check that out.

Thank you so much for watching.

This is Patrik Hutzel from intensivecareathome.com and I will talk to you in a few days.

Take care for now.

Now, if you have a loved one in intensive care and you want to go home with our service intensive care at home and if you want to find out how to get funding for our service and how it all works, please contact us on one of the numbers on the top of our website, or send me an email to [email protected]. That’s Patrik, just with a K at the end.

Please also have a look at our case studies because there we highlight more about what we can do for clients, how clients can live at home with ventilation and tracheostomies and you can look at our case studies as well at our service section.

Intensive care at home Case studies

And if you are at home already and you need support for your critically ill loved one at home, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of that.

And if you are an intensive care nurse or a pediatric intensive care nurse with a minimum of two years, ICU or pediatric ICU experience, and you ideally have a critical care certificate, please contact us as well. Check out our career section on our website. We are currently hiring ICU and pediatric ICU nurses for clients in the Melbourne metropolitan area, Northern suburbs, Sunbury, Bendigo, Mornington Peninsula, Bittern, Patterson Lakes, Frankston area, South Gippsland, Drouin, Warragul, Trida, Trafalgar and Moe as well as Wollongong in New South Wales.

www.intensivecareathome.com/careers

So we are also an NDIS, TAC (Victoria) and DVA (Department of Veteran Affairs) approved community service provider in Australia. Also have a look at our range of full service provisions.

Thank you for watching this video and thank you for tuning into this week’s blog.

This is Patrik from Intensive Care at Home, and I’ll see you again next week in another update.