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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 with tracheostomies. We provide tailor-made solutions at home for long-term ventilated adults and children on BiPAP (Bilevel Positive Airway Pressure), CPAP (Continuous Positive Airway Pressure), non-invasive ventilation,, where we provide tailor made solutions fat home for adults and children with tracheostomy without ventilation, home ventilation and tracheostomy weaning whenever medically appropriate, home cough assist management, home TPN (Total Parenteral Nutrition), home IV (intravenous) fluids, home IV antibiotics, and home IV potassium, magnesium, and other electrolyte infusions.

 

That goes hand in hand with central line, PICC line, Hickman’s line, and port management at home. We are also providing solutions at home for IDC (indwelling catheter), SPC (suprapubic catheter) management, PEG (Percutaneous Endoscopic Gastrostomy) tube, PEJ tube, nasogastric tube, and naso-jejunostomy tube management at home, as well as palliative care management at home.

 

We can also provide an emergency department bypass service at home — we have a track record of that — and we also provide Level 2 and Level 3 NDIS (National Disability Insurance Scheme) support coordination, as well as TAC (Transport Accident Commission) case management.

 

Every year, a small number of Australian children live with conditions that mean their life will be shorter than expected: congenital heart disease, severe neuromuscular diseases, complex chromosomal conditions, catastrophic brain injuries, or cancers that no longer respond to treatment.

 

For these children and their families, the question isn’t only how we treat this — it’s how we make sure the last weeks, months, or years are safe, dignified, and as good as they can possibly be, wherever that care is happening.

 

The Australian Commission on Safety and Quality in Health Care addresses exactly this question in its national consensus statement, Essential Elements for Safe and High-Quality Paediatric End of Life Care. It’s a document written primarily for hospitals and acute paediatric services, but the principles inside it are just as relevant — arguably more relevant — once a family decides to bring that care to their home.

 

In this blog post, I want to break down what the consensus statement actually says, and then show you, element by element, what it looks like when it’s genuinely delivered in a home ICU (Intensive Care Unit) setting rather than just written down in a policy folder.

 

What Does the National Consensus Statement Actually Cover?

The consensus statement sets out nine essential elements split into two groups. The first five elements describe how end-of-life care should be approached and delivered day to day. The remaining four describe the organizational structures a health service needs to have in place before any of that day-to-day care can be considered safe.

 

We have done pediatric palliative care at home for many years. It doesn’t happen too often, and that’s a good thing, but we have done pediatric palliative care from our early days, working closely with the Children’s Hospital here in Melbourne to provide that essential end-of-life care for children.

 

It is very sad when that happens. But it is still the better option to provide that palliative care at home than it is in an ICU or in a hospital.

 

The Five (5) Processes of Care Elements

The Patient and family-centered care. The child and family’s values, culture, and wishes would drive the plan, not the other way around.

 

The Teamwork and coordination of care. Medical, nursing, allied health, and community services working from the same plan, not five different plans.

The Components of care (also known as goals of care). A clear, documented, regularly revisited plan covering symptom control, psychosocial and spiritual support, and what happens if the child deteriorates.

 

The Use of triggers to recognize children approaching the end of life. Structured clinical indicators, not guesswork, that prompt a shift in the focus of care.

 

and the Response to concerns. A clear pathway for families and staff to escalate when something doesn’t feel right, and for that escalation to be acted on.

 

The Four (4) Organizational Prerequisites

First, leadership and governance. Committed, accountable leadership that makes safe end-of-life care an organizational priority, not an afterthought.

Second, Education and training. Every clinician involved has the specific skills paediatric end-of-life care requires.

 

Third, Supervision and support for interdisciplinary team members. Caring for a dying child is some of the hardest work in healthcare, and staff need active support to do it well and sustainably.

 

And fourth, Evaluation, audit, and feedback. Every case is reviewed, and what’s learned actually changes practice.

 

Read together, these nine elements describe a single idea: safe end-of-life care for children isn’t just about compassion at the bedside or in someone’s home. It’s about the system — staffing, training, and accountability — that stands behind that bedside, whether the bedside is in a hospital ward or a family’s living room.

The good news is we are Australia’s first and only third-party accredited and NDIS (National Disability Insurance Scheme) registered Intensive Care at Home nursing service, so we tick all of these boxes because we get audited every year for multiple accreditation statuses. I’ll come to that in more detail a bit later, but this was a good introduction to bring up — that we are audited all the time, accredited and NDIS registered.

 

Why This Matters More, Not Less, Once Care Moves into Someone’s Home

Hospitals build these nine elements into rostering, governance committees, credentialing, and mandatory training as a matter of course. When a child with a tracheostomy, a ventilator, or complex palliative care needs is cared for at home instead, none of that infrastructure automatically comes with them — it has to be deliberately rebuilt around the family.

 

In my 25-plus years as a critical care registered nurse in three different countries — Germany, the UK and Australia — where I also worked as a nurse manager for over five years since I started Intensive Care at Home in 2012 here in Australia, and where I was also part of setting up intensive care at home services in Germany in the early 2000s, I have worked in the critical care nursing space, whether in an ICU in a hospital or at home, for over 25 years.

 

I can tell you this is exactly where paediatric home care most often falls short. A hospital paediatric ICU has a governance structure, a roster, a CCRN (Critical Care Registered Nurse) at the bedside, mandatory competencies, and an incident review process built in. A family caring for a ventilated or tracheostomized child at home has none of that unless someone builds it for them — and again, that’s where we come in with Intensive Care at Home, because we have built that very infrastructure in the community instead of in an ICU or in a hospital.

 

That’s why I always say we provide a genuine alternative to a long-term stay in ICU, whether pediatric or adult ICU. So, you can trust that we have built that infrastructure, that we have built that team at home where we can safely provide palliative care at home.

 

Teamwork and Coordination — Who’s Actually on the Team?

In a paediatric ICU, teamwork means specialist nurses and allied health rounding together. At home, teamwork too often means a rotating cast of agency staff who have never met the child before, who are not appropriately credentialed, who are, if anything, often picked off the street, working from a generic care plan rather than one built around this specific child’s triggers, this specific family’s wishes, and this specific tracheostomy or ventilator setup.

 

Genuine coordination at home requires a consistent core team of critical care registered nurses, 24/7, who know the child, communicate directly with the treating specialists, and update the plan as the child’s condition changes — not a different worker every shift reading yesterday’s notes. This is exactly our point of difference. We have built the team at Intensive Care at Home. We have been operating since 2012, and we have a stable CCRN team that has worked with us for many years who know exactly what they need to do in a situation when it comes to paediatric palliative care.

 

Triggers and Response to Concerns — Who’s Watching, and Do They Know What They’re Looking At?

Recognizing that a child is deteriorating or that a plan needs to change requires good clinical judgment, built on critical care training, not just familiarity with the child. This is an analogy I come back to time and time again: you wouldn’t put a flight attendant in the cockpit because they’re kind, experienced with passengers, and know the aircraft well. You need a trained pilot.

 

In the same way, invasive ventilation with tracheostomy, complex BiPAP (Bilevel Positive Airway Pressure), CPAP (Continuous Positive Airway Pressure) management without tracheostomy, and tracheostomy care without ventilation are all clinical categories that call for critical care registered nurses in the home 24/7. This is evidence-based, as per our Mechanical Home Ventilation Guidelines, which you can find on our website at intensivecareathome.com — because only pediatric and adult CCRNs have the training to recognize early trigger points the consensus statement describes and to escalate appropriately before a manageable problem becomes an emergency.

 

Where the System Falls Short for Paediatric Homecare Families

This is where the consensus statement’s organizational prerequisites collide with the reality of how paediatric complex care is funded and staffed in Australia. Families are frequently offered support-worker-heavy care packages under the NDIS as a lower-cost alternative to 24/7 nursing care, on the assumption that a support worker with some additional training can safely manage tracheostomy or ventilator care.

 

If that were safe, why are we not using disability support workers in an ICU supervised by ICU nurses and ICU doctors? It would be a futile exercise, and it’s the same in the community. Many people have died under this model — that’s publicly, and sometimes privately, known — and there is a lot of evidence for what I’m saying here. I’ve said this consistently, and I’ll keep saying it: that’s a downgrade in the clinical safety of the child, not a cost-neutral substitution, and it runs directly against the leadership and governance, education and training, and evaluation and audit elements the consensus statement describes as essential. You cannot audit and continuously improve a standard of care that was never clinically adequate to begin with.

 

The same underlying problem shows up on the funding side. Families of children with life-shortening conditions frequently spend months navigating NDIS planning, evidence requirements, and funding reviews at exactly the point in that child’s life when that time and energy is needed at the bedside, not on paperwork. A national consensus statement that calls for coordinated, well-governed, properly staffed paediatric end-of-life care is only as good as the funding pathway that gets a qualified CCRN into that home in the first place.

 

The good news is we can help with the funding aspect of your child’s care, especially under the NDIS, because we also provide Level 2 and Level 3 NDIS support coordination and have a track record of helping families with funding for 24-hour nursing care — by providing the right clinical evidence and by tapping into our network of allied health professionals.

 

Medical Records — Your Right to See the Evidence Behind the Plan

One of the most practical things I recommend to every family I speak with, whether their child is in a paediatric ICU or already receiving care at home, is to request a full copy of the medical records. This isn’t about distrust of the treating team — it’s about being able to independently check that the components of care, the documented triggers, and the escalation pathway the consensus statement describes are actually in the file, actually current, and actually being followed, rather than assuming they are because you were told they are.

 

Let’s break this down further:

First, ask for the full medical records — not a summary — progress notes, nursing observations, and the current goals-of-care documentation.

Next, check that the plan reflects a recent conversation with your family, not one that’s months out of date.

 

Next, confirm who’s rostered to be at the bedside for each shift, and what their qualification actually is.

 

And if something in the records doesn’t match what you were told verbally, raise it in writing and ask for a response in writing.

 

How Intensive Care at Home Delivers Every One of These Elements

Intensive Care at Home was built around exactly these gaps. We are Australia’s only third-party accredited specialist Intensive Care at Home nursing provider — accredited to ISO (International Organization for Standardization) 9001:2015 and registered with the NDIS — which means our leadership and governance, and our evaluation, audit and feedback processes, aren’t just internal promises; they’re independently verified.

 

We operate across Victoria, New South Wales, Queensland, South Australia, the ACT, Western Australia, the Northern Territory, and Tasmania — all states and territories — and we employ hundreds of years of critical care nursing experience combined, which enables us to look after the highest-acuity clients in the community safely.

 

For families of children approaching the end of life at home, that means a consistent, trained team who can recognize the clinical triggers the consensus statement describes, a genuine escalation pathway when something changes, and a service built for the teamwork and coordination of care the document calls for — not a fragmented roster of unfamiliar faces.

 

It also means the same accountability structures a hospital paediatric ICU has: mandatory competencies, ongoing education, a clinical leadership team, and formal review of every case — all of which you can read more about at intensivecareathome.com, including our accreditation and quality information, and our evidence-based Mechanical Home Ventilation Guidelines, which clearly show that 24/7 critical care registered nurses are needed at all times.

 

Reach Out for Help

If you’re a parent, a hospital, a doctor, a hospital executive, a discharge coordinator, a senior nurse in a hospital, or already in the community and need help — if you’re a family struggling with any of what I’ve mentioned today and trying to work out what safe, high-quality end-of-life or complex care at home should actually look like for your child, or if you’re already receiving care and something doesn’t feel right and you want to upgrade your care or your funding — we can help with any of that.

 

Go to intensivecareathome.com, call one of the numbers at the top of our website, schedule a call with me, or send me an email to [email protected]. If you’re in Australia, you can call me directly on my mobile phone: 0410 942 230.

 

Our goal is the same one the consensus statement is built around: that a child approaching the end of life receives care that is safe, well governed, properly staffed, properly funded, and centered on what that child and family actually need, wherever that care is delivered.

 

The Bottom Line

Australia now has a clear, nationally endorsed description of what safe, high-quality paediatric end-of-life care requires: person- and family centered planning, real teamwork, documented triggers and escalation pathways, and the governance, training, and audit structures to back all of it up. The gap isn’t in the document — it’s in making sure that standard travels with the child when their care moves from a paediatric ICU bed to their own bedroom, and that’s the gap Intensive Care at Home exists to close.

 

Final Words

If you are in the US, UK, Canada, India, or anywhere else and want to know more about Intensive Care at Home, please reach out to us through the website — we can help you there too.

 

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 a 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 a 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 and 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 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 is applicable to 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, how to advocate for it, or 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 availability 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 at 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.