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Can My Loved One with MND (Motor Neuron Disease) on BIPAP (Bilevel Positive Airway Pressure) in ICU Have a Tracheostomy & Go Home with INTENSIVE CARE AT HOME?

If you want to know what the options are if you have a family member in intensive care with motor neuron disease on BIPAP, stay tuned. I’ve got news for you.

My name is Patrik Hutzel from intensivecareathome.com. This week we had an inquiry from a family who has their 77-year-old family member in intensive care who has been very recently diagnosed with motor neuron disease and is now in intensive care on BIPAP. He’s fully conscious and the intensive care team says that it’s “in his best interest” to just pass away because a tracheostomy would not be “in his best interest” because he wouldn’t have any quality of life.

Now, I call nonsense and all of that because with Intensive Care at Home, we’ve been looking after patients at home with motor neuron disease and the tracheostomy for a long time. Also, I’ve been looking after patients at home with tracheostomy and motor neuron disease 25 years ago in Germany with Intensive Care at Home.

So, the whole notion from intensive care teams or from sometimes even MND associations, whether the state MND associations in Australia who are very negative towards the tracheostomy need a crash course in what’s actually possible at home and need to give patients control and choice and not just say that it’s “in the patient’s best interest” to die just because they’ve been diagnosed with what is a progressive and terminal illness but life can be prolonged if everyone is showing some goodwill and if the patient and the family want that and instead of letting someone die. Well, why not let them live and give them a choice?

There’s plenty of time to talk about end of life once the tracheostomy is done in case a patient or a family changes their mind but give them a choice so that patients or families always have time to think about it.

So, what is the quality of life? What is it? It’s not something that an intensive care team can measure. It is something that an individual needs to decide for themselves, what quality of life they want, what quality of life is acceptable for them when they are critically ill or terminally ill, in the absence of an advanced care plan.

But what I can confidently say is that we’ve had patients at home and have patients at home with MND tracheostomy ventilation for over 5 years. They’re living a very good quality of life, and they want to live. So, if you have a family member in intensive care with MND (Motor Neuron Disease) or if you’re at home and your disease is progressing, tracheostomy is an option if you want that. If you don’t want that, that is absolutely fine.

But you need to make an informed decision, and you need to talk to people who actually live with the tracheostomy in the community, and not let people talk about it who have no idea about what is actually happening in the community.

What we’ve seen over the years as well is that with motor neuron disease on BIPAP, in particular, the disease can progress rapidly and patients die very quickly, especially without a tracheostomy. So, you probably don’t have a lot of time to make a decision, but you got to make an informed decision. Once again, do not let anyone tell you what is quality of life for you and for your family because that is something you decide.

Once again, I also appeal to motor neuron disease associations around the country, in Australia, in particular, where they’re giving patients very poor advice because they haven’t really looked at what’s happening overseas and they’re not really advocating for patients and families to receive NDIS (National Disability Insurance Scheme) funding.

When patients have a tracheostomy and the ventilator, they say, “No, it’s too hard to advocate.” It’s too hard to advocate if you don’t know what you’re advocating for. It’s too hard to advocate if you don’t know what is actually needed in the community, which is a critical care nurse for someone on a ventilator with the tracheostomy.

I’ve heard now NDIS Support Coordinators that work for MND associations saying, “Oh, it’s too hard to advocate.” Well, that is your job to advocate. You shouldn’t be in that role if you can’t advocate, if you can’t get results. You should go into another job. That’s what I’m advising here and I mean that with all sincerity because most NDIS Support Coordinators are not clinical people, they’re not clinicians. They don’t even know what they’re advertising or what they’re advocating for because they don’t understand. It’s a very specialized skill to look after someone on a ventilator with a tracheostomy in the community, and NDIS Support Coordinators certainly don’t have it.

So, you got to come to the right place in order to get the right advocacy. You certainly get the right advocacy here with Intensive Care at Home because we are the experts on what’s happening in the community when it comes to ventilation and tracheostomy.

Our services are actually evidence-based. You can verify that on our website at intensivecareathome.com. You can look up the Mechanical Home Ventilation Guidelines, you can see why critical care nurses are needed 24 hours a day. Once again, it’s evidence-based.

So, anything is possible with the right mindset and with the will to live. If intensive care teams, in a situation like I explained to you today, don’t have the will to keep someone alive, you have to ask the question, what’s the hurry in killing someone in intensive care? Please tell me what’s the hurry? Why are we not keeping people alive if people want to in particular? What’s the hurry to kill someone in intensive care?

So, with Intensive Care at Home, we are providing a tailor-made solution for long-term, ventilated adults and children with tracheostomies at home and we also provide tailor-made solutions for hospitals and intensive care units at home whilst providing quality care for long-term ventilated adults and children with tracheostomies at home. Otherwise, medically complex adults and children at home, which includes Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure), home tracheostomy care for adults and children that are not ventilated, Home TPN (Total Parenteral Nutrition), home IV potassium infusions, home IV magnesium infusions, as well as home IV antibiotics. We also provide port management, central line management, PICC (Peripherally Inserted Central Catheter) line management, as well as Hickman’s line management, and we also provide palliative care services at home.

We’re also sending our critical care nurses into the home for emergency department bypass services, and we have done so successfully as part of a program at the Western Sydney Local Area Health District, they’re in-touch program, saving approximately $2,000 per patient that we kept at home instead of going to ED and we did that regularly. We’re also saving approximately 50% of the cost of an ICU bed, which is around $5,000 to $6,000 per bed day.  So, we’re saving roughly $2,500 a day.

Now, with Intensive Care at Home, we are currently operating all around Australia in all major capital cities as well as in all regional and rural areas. We’re an NDIS approved service provider all around the country, TAC (Transport Accident Commission) and WorkSafe in Victoria, iCare in New South Wales, NIISQ (National Injury Insurance Scheme in Queensland), DVA (Department of Veteran Affairs) all around the country. Our clients, and we as a provider, have also received funding for public hospitals, private health funds, as well as departments of health.

We are the only service provider in Australia in 2024 that has achieved third-party accreditation for Intensive Care at Home nursing. No other provider has created as much intellectual property for Intensive Care at Home nursing than we have. We are, therefore, in a position to employ hundreds of years of intensive care and critical care nursing experience in the community combined. No other provider once again brings this level of expertise into the community than we do.

If you’re at home already and you’re watching this and you’re on a ventilator, tracheostomy, BIPAP, CPAP at home, Home TPN, whatever the case may be, and you realize that your current setup is not working and is even dangerous and that your current team is not having the skills, mindset, and expertise, and stability to keep you at home predictably, and you feel unsafe where you’re going back to ICU all the time, you’re going back to hospital all the time, then you should contact us here at intensivecareathome.com before something serious happens, and so that we can help you to stay home predictably.

Many patients in the community have died on ventilation and tracheostomy because of support worker models and not a critical care nurse model like we do. Once again, our services are evidence based. So, if a support worker model was safe, why are we not having support workers in a hospital in intensive care? Why all of a sudden support workers?

If you’re in an ICU watching this or you have a family member in an ICU watching this and you’re there long-term or your family member is there long-term, ventilation, tracheostomy, anything that confines them to an ICU or a hospital bed long-term, I encourage you to reach out to us here at intensivecareathome.com. Just call us on one of the numbers on the top of our website. or send us an email to [email protected] so that you get the right level of care and the right level of funding.

That’s also why we’re providing Level 2 and Level 3 NDIS Support Coordination. Our NDIS Support Coordinator, Amanda Riches has a wealth of knowledge. I’ll put the link in the written version of this blog to an interview that I’ve done with Amanda a while ago.

If you’re an NDIS Support Coordinator watching this and you’re looking for nursing care for your participants, please reach out to us as well. If you’re looking for funding for more nursing care for your participants and you don’t know how to go about it and what evidence to provide, I also encourage you to reach out to us. We can help you with the right advocacy. We also provide NDIS specialist nursing assessments done by critical care nurses with a legal nurse consulting background.

If you’re a critical care nurse and you’re looking for a career change, we’re currently offering jobs for critical care nurses in the home in Melbourne, Sydney, Brisbane, Albury, Wodonga, Bendigo in Victoria, as well as in Warragul and in Geelong in Victoria. If you have worked in critical care for a minimum of two years pediatric ICU, ED, and you have already completed the postgraduate critical care nursing qualification, we will be delighted to hear from you.

Disclaimer though, because we’re offering a tailor-made solution for our clients, which includes regular staff, our clients want to have the same staff coming over and over again because they’re so vulnerable and so special. It’s all about building those critical relationships with our clients and with our team members and having regular and stable teams.

That means if you’re looking for agency work where you can come and go, this is probably not the right fit for you on a long-term basis because our clients want regular and the same staff over and over again. It’s all about building those critical relationships with our clients and their families and we want to build relationships with you as well so that it remains a win-win situation.

If you are an intensive care specialist or an ED specialist, we also want to hear from you. We are currently expanding our medical team as well. We can also help you eliminate your bed blocks in ICU, ED for your long-term patients or for your regularly readmitting patients with our critical care nurse team at home. We’re here to help you take the pressure off your ICU and ED beds and in most cases, you won’t even pay for it.

If you’re a hospital executive watching this and you have bed blocks in your ICU, ED, respiratory wards, et cetera, please reach out to us as well. We can help you.

If you’re in the U.S. or in the U.K. and you’re watching this, and you need help. We want to hear from you as well. We can help you there privately.

Once again, our website is intensivecareathome.com. Call us on one of the numbers on top of our website or send us an email to [email protected].

If you like my videos, subscribe to my YouTube channel for regular updates for families with Intensive Care at Home and intensive care, click the like button, click the notification bell, share this video with your friends and families 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 intensivecareathome.com and I will talk to you in a few days.

Take care for now.