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My name is Patrik Hutzel from intensivecareathome.com, where we provide tailor-made solutions for long-term ventilated adults and children at home 24/7 with critical care nurses, where we provide tailor-made solutions for long-term ventilated adults and children on BiPAP (Bilevel Positive Airway Pressure), CPAP (Continuous Positive Airway Pressure) without tracheostomy 24/7 with critical care registered nurses, where we provide tailor-made solutions with 24/7 critical care registered nurses for tracheostomy adults and children without ventilation at home.

 

We provide ventilation and tracheostomy weaning when medically appropriate. Cough assist management at home, home TPN (Total Parenteral Nutrition), IV (intravenous) fluids, IV antibiotics, IV potassium and magnesium infusions, central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line and port management at home, IDC (Indwelling Catheter) and SPC (Suprapubic Catheter) management, PEG (Percutaneous Endoscopic Gastrostomy) and PEJ (Percutaneous Endoscopic Jejunostomy) tube management, and nasogastric tube and nasojejunostomy tube management at home, as well as palliative care management at home. We’re also providing Level 2 and Level 3 NDIS (National Disability Insurance Scheme) support coordination, as well as TAC (Transport Accident Commission) and WorkSafe case management.

 

In today’s blog post, I want to answer a question from a reader whose husband has been in ICU for more than 3 months on a ventilator with a tracheostomy and a PEG tube. It is one of the most important questions families ask me, and it deserves an honest and straightforward answer.

 

Here is the reader’s question:

 

“Hi Patrik,

My husband, previously fit and healthy, has chronic kidney disease, vascular disease, and COPD (Chronic Obstructive Pulmonary Disease). He had surgery and was doing fine before the surgery, but after the surgery, he suddenly had trouble breathing, and he was put on a ventilator. He now has been in ICU for over 3 months and had a tracheostomy and PEG two months ago. He’s receiving sedation because he’s agitated, angry, tired and hyper. And his hands are tied down to calm him down.

 

He’s frustrated and angry because he didn’t want to be like that. I want to know if he still has quality of life if he goes home with Intensive Care at Home on a ventilator and tracheostomy, after having the ventilator placed four times, and now it cannot be removed.”

 

So, let’s first of all look at the key takeaways.

 

Number one, yes, many people live meaningful lives at home on a ventilator with a tracheostomy, talking with a speaking valve, spending time with family, getting outside, and for some, eating and drinking again. But it depends on the person, their illnesses, and above all, what they and their families value.

 

Number two, the agitation, anger and restraints you are seeing right now are very likely not who he is going forward. After 3 months in ICU, ICU delirium or ICU psychosis, sleep deprivation, sedation, pain and loss of control are extremely common, and many are treatable.

 

Number three, multiple failed attempts to come off the ventilator do not always mean never. With COPD, kidney disease and ICU-acquired weakness, weaning is often very slow. Some people wean at home over months. Some stay ventilated long-term and live well.

 

The research is honest about the challenges. A German study of patients who went home on a ventilator after failed weaning found that many struggled with mobility, communication and social contact, and COPD patients struggled more. Knowing this helps you plan and helps him make an informed choice.

 

Number five, his own voice matters the most. Once the delirium is managed, the most important question is, what does he want? What does he value? Long-term home ventilation, continued weaning, or a focus on comfort are all legitimate choices.

 

Let’s now look at understanding the clinical picture, and let me break down for you what is going on here, because when you understand the clinical picture, you can ask much better questions of the ICU team. And before I go into that, you might be wondering what makes me qualified answering questions like this.

I have worked in critical care nursing for over 25 years in three different countries, where I worked as a nurse manager for over 5 years. And I’ve been running Intensive Care at Home since 2012 here in Australia, after I was part of a successful pioneering nursing service in Germany in the early 2000s, Brambring Jaschke in Munich at the time, and we were pioneering Intensive Care at Home since. And I brought the concept to Australia in 2012 because I saw patients in ICU in Australia that simply could be looked after at home with critical care registered nurses 24 hours a day.

 

So let’s continue with understanding the clinical picture. Your husband went into surgery with three significant chronic conditions. Number one, chronic kidney disease, also known as CKD. Number two, vascular disease. And number three, chronic obstructive pulmonary disease, also known as COPD.

 

Each of these on its own reduces the body’s reserve. Together, they mean a major operation can tip the lungs, the heart and the kidneys into failure, even in someone who seemed to be coping well beforehand.

 

After surgery, your husband developed respiratory failure and needed a breathing tube and a ventilator. Because he couldn’t come off the ventilator, he had a tracheostomy, which is a breathing tube placed directly into the windpipe through the neck, and a PEG tube for feeding. Both are standard steps for anyone who needs longer-term ventilation.

 

A tracheostomy is usually more comfortable than a tube through the mouth, needs less sedation, and makes it possible to talk with a speaking valve, move, sit out of bed, and in many cases, eat and drink again. But that’s not guaranteed.

You mentioned the ventilator was placed four times. In ICU language, this usually means he has had several attempts to come off the ventilator that didn’t succeed, and he had to go back on it. That is very frustrating for everyone, including yourself. But in someone with COPD and kidney disease, it is unfortunately common.

 

You might now also want to know, why is he agitated, angry and restrained? This is the part that I suspect is breaking your heart the most, so let me spend some time on it. In my over 25 years as a critical care registered nurse in three different countries, Germany, UK and Australia, I have seen this picture many, many times. A patient who has been in ICU for months, who is sedated, agitated, hyper, exhausted and angry, is very often suffering from ICU delirium and ICU psychosis.

 

Delirium is an acute state of confusion that affects a large proportion of ventilated ICU patients. It can look like aggression, restlessness, pulling at tubes, fear, paranoia or withdrawal.

 

Common contributors include, but are not limited to:

1. Sedative and opiate medications, particularly benzodiazepines, but also morphine and fentanyl, can make delirium worse.

2. Sleep deprivation. ICUs are noisy, bright and busy around the clock.

3. Kidney disease, which can cause a buildup of toxins and affect how medications are cleared from the body.

4. Low oxygen or high carbon dioxide levels in someone with COPD.

5. Infection, pain, constipation, electrolyte imbalances, and withdrawal from medications or alcohol.

6. Loss of control and inability to communicate. Imagine being awake, unable to speak, unable to move your hands, and not understanding why. Anger is a very natural human response.

 

Tying a patient’s hands, also known as physical restraints, is used in ICU to stop someone pulling out a tracheostomy or other lines, which can be life-threatening. But restraints can also make agitation, distress and frustration worse. It is completely reasonable to ask the ICU team what the plan is to reduce and remove restraints and sedation safely.

 

Let’s now look at what treatment options you should ask the ICU team about. Every patient is different, and only the treating team can make clinical decisions for your husband. These are the questions I would be asking in a family meeting if I was you, to ask the right questions.

 

1. Has he been formally assessed for delirium, for example with the CAM-ICU (Confusion Assessment Method for the Intensive Care Unit) tool, and what is being done to treat it?

2. What is the sedation plan? What is his target sedation level? And can sedatives that worsen delirium be reduced or swapped?

3. Can we try a speaking valve, such as a Passy-Muir speaking valve, or a cuff deflation so he can talk? Communication alone can transform agitation.

4. What is the weaning plan? Is he doing daily spontaneous breathing trials or tracheostomy mask trials? What exactly caused the previous failures: muscle weakness, fluids, COPD, heart function, secretions?

5. Is his kidney function and fluid balance optimized? Is dialysis part of the picture now or in the future?

6. Is he getting physiotherapy and early mobilization? ICU-acquired weakness is a major reason people fail to wean off the ventilator.

7. Is there a day-night routine? Lights, noise, sleep, glasses and hearing aids, a clock, family photos and family presence all help reduce delirium.

8. Can we involve psychiatry or psychology liaison and palliative care for symptom control and goals of care conversations? Palliative care is not only for end-of-life care. It helps with distress, breathlessness and decision making.

 

So does he still have quality of life on a ventilator at home? And here’s my straightforward answer, with all my experience: for many people, yes. But it has to be defined by him, not by me, or by you even. At Intensive Care at Home, we have supported adults and children on long-term ventilation with a tracheostomy for many years.

 

Quality of life at home can mean being in your own bed with your own family, your own food where swallowing allows, your own routine, your pets, your garden, your TV show, and the list goes on. It can mean talking with a speaking valve, going for walks in a wheelchair with a portable ventilator, going to the shopping center, going to visit friends and family, and being out of the hospital environment that often drives delirium in the first place. Many families tell us that the person they got back at home was very different from the agitated patient they saw in ICU.

 

But quality of life is very personal. Some people decide that long-term ventilation is not what they want, and that is their absolute right. The fact that your husband didn’t want to be like this is important, but it may reflect how he feels right now, in delirium, restrained and unable to speak. The priority is to get him to a point where he can think clearly and communicate, and then have an honest conversation with him about his goals.

 

If he has an advance care directive or has appointed a medical treatment decision maker, now is the time to bring that into the conversation with the ICU team.

 

So let’s now look at what the research says about quality of life after failed weaning. As some of you know, I trained and worked in ICU in Germany, in the UK, and worked in Australia in ICU before I started Intensive Care at Home. I worked with Intensive Care at Home services in Germany as well. So I want to actually share a German study that is directly relevant. It looked at exactly this group of patients: people who went home on invasive ventilation with tracheostomy after an ICU stay and unsuccessful weaning.

 

In 2018, researchers from the Department of Pneumology of Cologne-Merheim Hospital published their findings in Annals of Intensive Care, Huttmann and colleagues. They visited 25 patients at home, 14 with COPD and 11 with neuromuscular diseases. All of them had 24-hour critical care registered nurses and full technical equipment and support. The findings were sobering.

 

Quality of life and life satisfaction were severely impaired for many of these patients. The biggest problems were mobility, communication, social contact, and dependence on 24-hour nursing care. Around one in three patients said that, looking back, they would not have chosen the tracheostomy. This was more common among COPD patients, 6 of 14, than among the neuromuscular patients, 2 out of 11. The study was small and done at one center, so the authors themselves called for more research in other countries.

 

Because there is another side of the evidence. An earlier Italian study, Marchese and colleagues in 2008, found that about 90% of patients on home tracheostomy ventilation would choose it again. Those patients were younger, their tracheostomies were planned rather than done in an emergency, and fewer of them had lung diseases. A 2020 study from Hungary published in BMC Pulmonary Medicine found that overall quality of life improved in the 6 months after the patient started home ventilation with 24-hour nursing care, although that study included both mask ventilation and tracheostomy ventilation.

 

I’m not sharing this to take away hope. I’m sharing it because you deserve the full picture. It also tells us what to focus on for your husband.

 

The decision has to be his decision, and it has to be informed. The German researchers called for ICU teams, weaning teams and home care teams to work together so that decisions reflect each patient’s own beliefs and circumstances.

Plan for the four problem areas before discharge. For mobility, that means a wheelchair and a portable ventilator. For communication, a speaking valve and communication aids. For social contact, time with friends and family. For care dependency, skilled and consistent 24-hour nursing with critical care and ICU nurses.

 

Pursue weaning as far as it can go. In the German study, more than half of the patients could breathe on their own for parts of the day. Every hour off the ventilator can mean more freedom.

 

And here’s an anchor case: Stephen Hawking. At the other end of the spectrum is the world’s famous physicist, Stephen Hawking. He had a tracheostomy in 1985 and lived with it for more than three decades, relying increasingly on ventilation and tracheostomy, until he died in 2018 at the age of 76. He kept working, writing and traveling.

 

His condition, motor neurone disease, such as MND (Motor Neurone Disease) and ALS (Amyotrophic Lateral Sclerosis), and his circumstances were very different from your husband’s. But his life shows that quality of life on a ventilator and tracheostomy is absolutely possible, and that what it looks like depends on the person.

 

So the question now is, can he go home on a ventilator and tracheostomy? Yes, absolutely. Going home on invasive ventilation with tracheostomy is well established. In Australia, and in Germany mainly, where I trained, home ventilation has been standard for around 30 years, and we’ve been running Intensive Care at Home now very successfully since 2012 in Australia.

The key question is not whether it’s possible, but whether it is done safely with 24-hour critical care registered nurses, because a ventilated patient with a tracheostomy can deteriorate within minutes: a blocked or dislodged tracheostomy tube, a mucus block, a ventilator alarm, or a sudden drop in oxygen.

 

That is why I use the analogy of a pilot in the cockpit. You would never let a passenger fly the airplane, or the cabin crew. It has to be the trained pilot. In the same way, a patient on invasive ventilation with tracheostomy needs critical care registered nurses, CCRNs (Critical Care Registered Nurses), or ICU nurses in the cockpit, if you will, 24/7, able to recognize and act on deterioration immediately. Not a general registered nurse without ICU experience, not an enrolled nurse, and definitely not a disability support worker who has had a few hours of training or no training at all.

 

This is obviously supported by the evidence when you look on our website at intensivecareathome.com, on our evidence-based Mechanical Home Ventilation Guidelines section, which I link to in the show notes. They set out what safe home ventilation looks like, including qualified 24/7 critical care registered nurses, equipment, emergency planning and hospital partnerships.

 

So what about weaning at home? Some patients who can’t be weaned in ICU make better progress at home, where they sleep better, eat better, are less delirious, and can build strength in a familiar environment. Home ventilation weaning is one of the services we provide, in partnership with the patient’s respiratory physician, ICU consultant, etc. It is not guaranteed, and with COPD and kidney disease it may be slow, but “can’t be removed in ICU” doesn’t always mean “can never be removed.”

 

I always also recommend that families request a copy of all of the medical records, especially after a long, complicated ICU stay. You can usually do this through the hospital’s freedom of information or health information and medical records department. The medical records will help you understand what happened after surgery and why he developed respiratory failure, why each weaning attempt failed, what sedation and medications he’s receiving and why, and how often restraints are being used and on what basis. Get doctor’s notes, nursing notes, respiratory physician notes, physio notes, OT (Occupational Therapy) notes, fluid balance charts, ventilation charts, vital sign charts, lab and pathology results. The list goes on. Leave no stone unturned, because having these medical records means you walk into family meetings informed and on equal ground, and it helps any independent professional you consult give you meaningful input.

 

And if you’re in a similar situation and you want professional guidance, and you want Intensive Care at Home from someone who has spent over two and a half decades in ICU and with Intensive Care at Home, you can speak to me directly through our intensivecareathome.com website. Call me on one of the numbers on the top of our website, or if you’re in Australia, you can call me on my mobile phone, 041 0942230. That is again 041 0942230.

 

And if you’re watching this and you’re in the UK, in Canada, in the US, in India, wherever you are, and you’re interested in Intensive Care at Home, please reach out to us. We can help you there privately.

 

We are first and foremost an Australian nursing service provider, and we operate all around Australia, in all major capital cities as well as in all regional and rural areas, basically in all states and territories. We are also the only third-party accredited Intensive Care at Home nursing service in Australia, accredited for Intensive Care at Home nursing with ISO (International Organization for Standardization) 9001:2015, as well as NDIS registered. You can read about our accreditation and quality systems. Again, I put a link in the show notes there. We work with TAC, NDIS, WorkSafe, DVA (Department of Veterans’ Affairs), private health funds, self-funded clients, departments of health, hospitals and so forth. And we provide Level 2 and Level 3 NDIS support coordination, as well as TAC and WorkSafe case management. Our service costs roughly half of what it costs to keep a patient in an ICU bed, which matters greatly when hospitals are looking for safe discharge options.

 

Once again, go and visit intensivecareathome.com, download our free resources, and subscribe to my YouTube channel for weekly videos answering questions just like this one.

 

The bottom line is this. Your husband has been through an enormous ordeal. What you’re seeing right now, the agitation, the anger, the restraints, is very often the ICU talking, not the man. Push for delirium management, communication and a clear weaning plan. Get the medical records, and once he can think and speak clearly, ask him what he wants. If that is life at home, a tracheostomy and ventilator do not have to be the end of a good life, provided it is done safely, with 24/7 critical care registered nurses with Intensive Care at Home by his side.

Just keep in mind that today’s video is general information only and is not a substitute for individual medical advice. Please discuss your loved one’s care with the treating medical team and with us.

 

With all of that said, with Intensive Care at Home, we are currently sending our critical care nurses into the home 24 hours a day. Therefore, we are providing a genuine alternative to long-term stay in intensive care for:

• Ventilation
• Tracheostomy
• Home BiPAP (Bilevel Positive Airway Pressure) and CPAP (Continuous Positive Airway Pressure)
• Tracheostomy care without ventilation
• home TPN (Total Parenteral Nutrition)
• Home IV potassium
• Home IV magnesium
• Home IV antibiotics
• Home IV fluids

We’re providing:

• Cough assist management at home
• Ventilation weaning management at home
• central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line as well as port management at home
• nasogastric tube, nasojejunostomy tube, PEG (Percutaneous Endoscopic Gastrostomy), PEJ (Percutaneous Endoscopic Jejunostomy) tube management at home
• IDC (Indwelling Catheter) and SPC (Suprapubic Catheter) management at home
• Palliative care services at home

 

We’re also sending our critical care nurses into the home for emergency department bypass services. We have done so successfully as part of the Western Sydney Local Health District’s In Touch program, saving approximately $2,000 per patient that we keep at home instead of them going into an emergency department.

 

That also means we’re in a position to cut the cost of an ICU bed by around 50%. An intensive care bed costs between $5,000 to $10,000 per bed day depending on location. Intensive Care at Home costs approximately 50% of that, and we’re freeing up the most sought-after bed in the hospital, which is the ICU bed. Most importantly, we’re improving the quality of life for patients and their families, which is a win-win situation for all stakeholders.

 

Our Coverage and Accreditation

With Intensive Care at Home, we’re currently operating all around Australia, in all major capital cities, as well as in all regional and rural areas. We are an NDIS approved service provider all around Australia, TAC (Transport Accident Commission) and WorkSafe in Victoria as well as the Department of Veterans Affairs all around Australia.

 

We’re also ISO 9001:2015 accredited. Our clients and we as a service provider have also received funding through public hospitals, private health funds as well as departments of health.

 

We are the only service provider in Australia that has achieved third-party accreditation for Intensive Care at Home nursing in 2025. We have been achieving this high level of accreditation since 2012. No other provider in Australia has achieved the Intensive Care at Home level of accreditation in the community and has created more intellectual property when it comes to Intensive Care at Home nursing than we have.

 

This puts us in a position to employ hundreds of years of critical care nursing experience combined in the community. No other service provider in 2025 employs a higher skill level in the community than we do. And that enables us to look after the highest acuity adults and children in the community in Australia safely.

 

If You Need Help

If you’re at home already and you’re watching this or you’re stuck in an ICU and you realize that you don’t have the right level of support, I can give you many examples where we helped clients with funding, how we advocate for funding. We had to advocate successfully for funding from our first case study to many other case studies where we had to advocate successfully for funding with the right evidence of course because it is crystal clear that disability support workers for example or registered nurses without ICU experience cannot look after ventilated clients at home whether adults or children with or without a tracheostomy and it’s simply dangerous and negligent.

 

There are plenty of examples where clients with support worker models or even RN (registered nurse) models without ICU experience have died at home and I have evidence to back up everything that I’m saying here because it’s a bit like flying the airplane with a cabin crew instead of the pilot and it could simply be deadly.

 

This can be avoided by having simply 24-hour critical care nurses at home because our clients are at high risk of medical emergencies or worse without critical care nurses 24 hours. This is actually also evidence-based in the community and is documented in our evidence-based Mechanical Home Ventilation Guidelines on our website at intensivecareathome.com.

 

Think about it: in an intensive care unit in a hospital, you wouldn’t have support workers or general registered nurses looking after a critical care patient on a ventilator with a tracheostomy. So why would anyone in their right mind do that in a home care environment where there are fewer resources?

 

Clients that have found us have been at home long-term predictably and permanently with critical care nurses. Their alternative would have been to either die or stay in ICU long-term, and our clients don’t go back to ICU. They stay at home permanently and predictably and the insurance bodies save half of the cost of an ICU. But it’s a win-win situation all around.

 

We can do the same for you if you’re stuck in ICU or if you’re not safe at home, which includes the advocacy for funding and the network that goes along with it. We have always successfully advocated for our clients or we have the network to successfully advocate for you and for your family member, otherwise we wouldn’t be in business. The same again is applicable for those stuck in an ICU which is similar to many of our, if not most of our cases.

 

Our Support Coordination Services

This is also why we are providing Level 2 and Level 3 NDIS support coordination. We have a team of experienced NDIS support coordinators, and they have a wealth of knowledge. We’re also providing TAC case management and WorkSafe case management in Victoria with Lucy McCotter.

 

If you’re an NDIS support coordinator or a case manager or a social worker from another organization or a hospital 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 nursing care for your participants and you don’t know how to go about it and how to advocate for it, what evidence to provide, I encourage you to reach out to us as well. We have the network to make that happen. We will help you with the right level of funding and with the right level of advocacy.

 

We’re also providing NDIS specialist nursing assessments done by critical care nurses with a legal nurse consulting background.

 

Join Our Team

If you are a critical care nurse and you’re looking for a career change and you want to join a very progressive, dynamic, successful, and high-performing team of critical care nurses in the community, we are employing hundreds of years of critical care nursing experience combined.

 

If you’re looking for a career change, we’re currently hiring for jobs for critical care nurses in Melbourne, Sydney, Brisbane, Albury-Wodonga, Bendigo, Geelong, Warragul, and also in Wyelangta in Victoria.

 

If you have worked in critical care nursing for a minimum of two years, adult ICU, pediatric ICU, ED and you have already completed a postgraduate critical care nursing qualification, we will be absolutely delighted hearing from you.

I have a disclaimer though: Because we are offering tailor-made solutions for our clients which includes regular staff, our clients do also want the same staff coming over and over again because they are so vulnerable and so special. That’s why we need regular, reliable staff.

 

If you’re looking for agency work where you can come and go, this will not be the right fit for you. We’re looking for consistency and our clients are looking for consistency. So please only apply with us if you can give us regular and consistent availabilities for shifts and you’re really keen on building relationships with us and with our clients. Reliability is also a must.

 

For Medical Professionals and Healthcare Executives

If you’re an intensive care specialist or an ED specialist, we also want to hear from you. We’re currently expanding our medical team as well.

 

We can also help you eliminate your bed blocks in your ICU and in your ED for your long-term patients or for your regularly readmitting patients with our critical care nursing team at home. We’re here to help to take the pressure off your ICU and ED beds. In most cases, you won’t even pay for it. Even if you do pay for it, it is so much more cost-effective than what you’re paying for in ICU and ED settings, and you get the same level of care and simply more patient and family satisfaction because you also want to partner with your consumers.

 

If you are a hospital executive watching this, we can help you free up your ICU and ED beds.

 

International Support

If you’re in the U.S. or in the UK and you’re watching this and you need help, we want to hear from you as well. We can help you there privately with one-on-one consulting and with hiring nurses privately.

 

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

 

If you like my videos, click the like button, 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, and share this video with anyone who has a family member in intensive care long-term or needs to see this.

Thank you so much for watching.

 

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

 

Take care for now.