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How INTENSIVE CARE AT HOME Upholds Best Practice Guidelines in Community & Saves Lives (Adults & Kids)

Hi. It’s Patrik Hutzel from intensivecareathome.com where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies at home, and where 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 clients at home, adults and children, which includes BIPAP (Bilevel Positive Airway Pressure), 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 at home.

We have also sent, and we continue to send our critical care nurses into the home for emergency department bypass services. We have done so successfully for the Western Sydney Local Area Health District, their in-touch program.

Now, today, I want to talk about a video that was published on the 1st of August 2024. Now, the video was published by the Global Tracheostomy Collaborative, and the Global Tracheostomy Collaborative is a global organization that talks about ensuring the best possible care for every tracheostomy patient, that’s what they say anyway.

Today, I will actually dismantle that, and I will actually showcase that they’re not ensuring that the best possible care for every tracheostomy patient is given because, especially in this video that was published on the 1st of August 2024, it says Navigating the Journey with a Tracheostomy: Transitions Through Childhood and Beyond. I will play some of what’s been said on that video here today, and I will then talk more about that.

So, to give you some context, the Global Tracheostomy Collaborative says that they are supposedly advocating for the best possible care for every tracheostomy patient, and that is simply not accurate because they’re not talking about the Mechanical Home Ventilation Guidelines which are evidence-based, which are published on our website.

Now, where does that fit into context? The context is this, the Mechanical Home Ventilation Guidelines are evidence-based and are a result of over 25 years of Intensive Care at Home nursing in Germany, as well as of over 12 years Intensive Care at Home nursing in Australia.

Now, the Mechanical Home Ventilation Guidelines clearly state that it’s safe only to have critical care nurses at home with a minimum of two years critical care nursing experience, ideally with the postgraduate critical care nursing qualification, 24 hours a day, once again, for adults and children at home on ventilation with tracheostomy, but also for tracheostomy without ventilation.

Now, if organizations do not adhere to those best practice standards, children have died, or adults have died. We know of at least four adults and children that have died at home on ventilation with tracheostomy or with tracheostomy without ventilation that have died in the hands of support workers or family members who simply could not manage medical emergencies. Now, if we know of four, there is probably more. I mean we obviously operate in the space, and we are the only organization in 2024 that has third-party accreditation for Intensive Care at Home nursing in Australia.

Now, the video, even though it’s a Global Tracheostomy Collaborative, the video that I’m referring to from the 1st of August 2024 is talking about children in Melbourne in Australia and the Monash Pediatric Hospital. Monash Pediatric ICU wants to send a toddler home on a ventilator with a tracheostomy with support workers. That, from my extensive experience, is a death sentence.

Especially, the Monash Children’s Hospital also in combination with the Royal Children’s Hospital should know better because some of the deaths that I’ve been referring to have come out of the Children’s Hospital. Three out of the four deaths that I’m referring to were pediatric clients that didn’t have 24-hour intensive care nurses, that only had partial cover, and those kids died when intensive care nurses were not present even though the NDIS at the time knew about it, the Children’s Hospital knew about it. Now, it looks like we’re going back into the dark ages again and sending children home with support workers. That is like flying the airplane with a cabin crew instead of the pilot.

But let’s play the video, and then I will come back here and comment on it later. Let’s play the video.

“Okay, so Sandy’s covered the ward to the home. I’m going to step back a little bit and talk about pediatric ICU to the ward with a ventilated tracheostomy. So, this is a new journey for us. I’m just going to give you a little background about gorgeous Mr. A, who’s up there on the photo.

So, Mr. A is the second son and third child. His siblings are in high school, age 16 and 17, and the family originates from Pakistan. So, as with Sandy’s, we do have some language issues and the availability of the father for training as he’s only available on a Sunday. He is absolutely adored and one of these delicious children that you just want to eat. His parents, however, are rather anxious for discharge, but nervous about what future care needs he’s going to require. 

I’ll go on to the slide from here. Mr. A is now 8 months of age, 5 months directed. He has a history of Trisomy 21, but developmentally, he’s progressing really well. He has some respiratory failure for chronic lung disease, but our main issue of concern that has delayed his transition, normal transition process with our tracheostomy clients, is severe multi-level and multifactorial airway obstruction due tracheobronchomalacia.

So, he had a tracheostomy formation done in March 2024 for obstruction and respiratory support. But unfortunately, even on high flow, we still had repetitive respiratory tract infections, as well as some consolidation. Initially, it was thought maybe to be aspiration, and so breastfeeding was ceased much to Mom’s displeasure, one would say, and she was very upset regarding that. With continued issues, he had a dynamic chest CT performed in May, which showed that he had, even on high flow, left main bronchus collapse during the expiratory phase of breathing.

However, CPAP did preserve the patency of his left main bronchus throughout respiratory cycle, preventing collapse and gas trapping. So, since continuous CPAP was implemented in May, he’s had a much more stable journey.

Subsequent to that, we’ve also lengthened the size of this tracheostomy tube. Initially, we’ve up sized into a size 4 Bivona, and then we further increased the internal length of the tracheostomy tube with a FlexTend Plus tube, which is in, and we currently have custom tubes awaiting delivery for him to try and stabilize his airway.

He had a past history of cardiac surgery. He’s got no issues with that anymore and some other co-morbidities that don’t impact on his being in hospital.

So, a little bit about management of the tracheostomy of Mr. A. So, we’ve had multidisciplinary team discussions between the Royal Children’s Hospital and Monash Children’s Hospital teams related to where the ventilatory care of A would sit.

Historically, tracheostomy ventilated clients have been transferred to the Royal Children’s for continued management as Monash Children’s did not have a service established as yet. Tracheostomy Working Group was formed in 2016 with the aim to improve and expand pediatric tracheostomy services, and this included working towards the development of a role and appointment of a tracheostomy clinical nurse consultant at the hospital, which we’re very pleased to say is hopefully going to be advertised within the next week or so.

Just a little bit of perspective, there’s two children’s hospitals in Victoria, the Royal Children’s and Monash Children’s, and Tracheostomy clients are managed at these two centers. A little bit of perspective about Australia. So, it’s estimated that our current pediatric population or children in Australia was 5.1 million of a total population of 26 and a half million.

If you wouldn’t mind just changing slides here, please, to the map. Thank you.”

So, before I continue playing this video, so we’re already talking about a very, very, very complex child where they have special tracheostomy tubes that would be challenging to handle for intensive care nurses, and that’s really the only professional group that should handle tracheostomy.

Like I said, when you go back to the Mechanical Home Ventilation Guidelines that are published on our website at intensivecareathome.com, when you come to the specialist training that intensive care nurses, adult and pediatric intensive care nurses, need to go through to handle tracheostomies, it is already crazy and unsafe and professional malpractice from my point of view, from my extensive professional practice as a critical care nurse, both in intensive care in three different countries, as well as with Intensive Care at Home, both in Germany and Australia.

So, let’s continue playing the video, but with such an extensive pre-medical history, the toddler is only 12 months old. Thinking about having support workers looking after him is gross medical malpractice and is going against the best and evidence-based practice, and that is with a recent history of pediatric clients dying at home because critical care nurses weren’t funded, 24 hours a day, and the Royal Children’s Hospital, as well as Monash Medical Centre, know that. Everyone who works in the industry knows that. It’s not a secret. So, let’s play the video. Let’s continue playing the video.

“So, once it was determined that A would stay at Monash Children’s Hospital as a client, we had to obviously accelerate the tracheostomy ventilator service so that we could deal with this. We had a collaborative approach from multiple departments to prepare appropriate documentation and troubleshooting guidelines, including emergency plans, education of both nursing and medical staff for readiness related to tracheostomy and ventilation care. Their list of the multiple teams that were involved. We’re extremely fortunate here to have medical nursing and scientific staff with the expertise and willingness to facilitate this, often out of hours and in their own time, but with a smile. So, it’s actually been quite exciting working as a team all together.”

“So, some considerations related to A’s care and why we wanted to keep him at Monash, if possible. One was family convenience and ongoing support. They’d already established a familiarization with the hospital and staff because he’d already been here for like 6 months. Transportation was an issue. Mom does not drive, and it’s an hour and a half to our hospital here at Monash, whereas travelling to the city would add extra length of time to travel. As mentioned before, they’re from Pakistan. The main languages being Urdu and Hindu. So, we have had some issues with the interpreter availability and quality. However, we have had been very fortunate. A lot of staff, both Allied Health, medical, and nursing staff do speak either Hindi or some Urdu, which has certainly facilitated his care needs here.”

“So, delaying transition to the ward. So, as Sandy mentioned before, typically clients will spend one a maximum of two weeks within the intensive care area and then transition out to the ward for their process of going home. Young Mr. A has now been in pediatric ICU for 5 months due to one, not having the policy to have ventilation within our wards, his instability initially with establishing him, but also hospital policies.

So, as we said, it was the instability prior to the CT, which was resolved with the increase in CPAP ventilation, which occurred in May.

Troubleshooting ventilator alarms. Initially, we had multiple obstructive alarms, so it was a process of working through how do we resolve these so that we can do a safe transition to the ward, let alone to home.

So, what we did in the process of resolving some of the obstructive alarms on the astral ventilation was his CPAP was increased to 6 to hopefully stabilize him. His peaking pressures, we increased to 12 to allow a little bit margin before obstructive alarms, and we commenced suctioning via the Bodai Y so there was no breach in the continuous CPAP or PEEP to support his lungs and keep them open during the expiratory phase to clear all secretions.

We had a lot of moisture in the circuit. So, we’ve taken to changing the expiratory port every 24 hours and increasing his use on a heme circuit, especially when awake and doing his activities on the mats the full time, because he was beneath the humidifier, and that was causing an increase.

We’ve had to implement impact statements related to tracheostomy ventilation on the ward to allow for the transition from PICU to the ward. We had to change hospital policies.

Development of documentation and education of nursing and medical staff related to tracheostomy ventilation and invasive versus non-invasive ventilation has had to occur and that’s progressing very nicely.”

“So, ward preparation and planning. So, as we’ve said, it’s had a lot of complex meetings up to our director of nursing, nurse unit managers, identifying a core group of staff who were prepared to and willing to be upskilled to look after A within a one-to-one initial nursing ratio on our ward. We do not have a HDU unit where A could have been transferred to, unfortunately, but everyone’s come on board, and they’re very happy to be upskilled to look after him in the care.

So, initially we’re looking at a one-to-one nursing ratio on the ward with the aim to decrease that ratio as the parents become competent and we have upskilled support staff that will be following him home to look after him, and then we can reduce the ratio because the parents will not have one-to-one extra assistance currently at home.

Staff education required a multi-level approach, initially with forming the documentation, educating the educators who then have gone on to disseminate the education to the staff.

Planned transition date was the end of July. Well, it’s the 2nd of August. So, how did we go? So, we have started transition to the ward. It started on the 29th of July, and he’s having increasing periods of time on the ward, but currently, he still goes back to PICU at night and over the weekend. So, hopefully by the end of one more week we will have staff who will have him fully within the ward environment and transition towards home.”

“So, as a summary, work in progress. So, tracheostomy training with the parents is a reinforcement stage. However, it’s been quite variable and inconsistent. One week being they’re doing brilliantly. The next week being they’ve let go of the tracheostomy before the ties are completely tied. This very much depends on what sort of a week they’ve had, how fatigued they are, and ongoing issues. Parental education related to ventilation and humidification has commenced.

NDIS, which is our National Disability Insurance Scheme, application was awaiting outcome. However, very pleased to announce that as of yesterday, Sandy received a phone call to say that our requests for equipment, which included two ventilators, a humidifier, suction unit, oximeter, and a hospital cot and some other sundries, looks like it has been approved. So, that is fantastic, and hopefully we’ve got a package with a lot of training hours to help support this family and training of staff in the transition to home.

So, complex care support worker recruitment is underway, and we will begin training now the transition has gone to the ward. We’re still awaiting an executive decision whether these support workers, who we can train in a hospital ward, will be allowed to care for him on a ward. So, we’ve currently got a policy with the legal department at the moment regarding that.

Due to a Bivona tracheostomy tube recall, which I’m sure you’re probably all experiencing depending what tubes you’re using, we are currently rotating two tubes, which are also part of the recalled stock, and we just clean them on a weekly basis.”

“We have ordered the custom tracheostomy tubes for him, and he will not be able to go home until he’s got non-recalled tubes in situ.

The father and brother will also be travelling overseas for three weeks soon, and we have a planned discharge home will not be until after they return, which very fortunately, we’ve been able to tell the family it’s more due to the fact that we’re waiting on a safe discharge with tracheostomy tubes rather than we don’t feel we could send Mom home alone.

Parents will obviously need to have completed education regarding tube feeding. We are now looking at replacing the nasogastric tube with a PEG (Percutaneous Endoscopic gastrostomy) tube sooner. He’s almost 7 kilos now. Initially, the gastroenterology unit wants to wait to 8 kilos, but he’s got some erosion occurring. He’s just had a stone. So, they’re looking at having the PEG sooner than later.

So, prior to going home, obviously the parents will need to have completed and be deemed competent in all of his cares. The Monash Children’s at home, his staff, we’ve commenced education related to what and not assessments as yet, but to be competent so that they also are trained in his care needs related to ventilation to support him in the home environment.

He’s failed several attempts at his speaking valve, which is very disheartening to the family who just really want to hear his voice.

So, what I could say at the moment is that we see the light at the end of this journey and thanks to a fantastic collaboration of teams in this process. Thank you.

Thanks so much, Tracy.”

Okay, thank you for bearing with me. So, this is obviously the video from the Global Tracheostomy Collaborative and the presentation from one of the clinical nurse consultants there at Monash Children’s Hospital.

Now, let me dissect this further. Obviously being an industry insider, there’s more than meets the eye. So, they’re talking about training the parents, and they’re talking about employing disability support workers through complex care at the Children’s Hospital.

Now, here’s what we know. Once again, at least three children and at least one adult have died in the community with tracheostomy plus minus ventilation because disability support workers, even general registered nurses without ICU experience or family members could not manage a medical emergency. That is with three out of those four, we were actually involved delivering hands-on care night shifts but not day shifts, and the children passed away during the day or one adult passed away during the day once again because there were no ICU nurses present, 24 hours a day, as is required, as per the evidence-based Mechanical Home Ventilation Guidelines.

So, the question from me to the Children’s Hospital or to Monash Pediatrics is why are you not applying the best and evidence-based practice in the community? Why are you not bringing in the best and the highest standards into the community when it comes to ventilated adults and children? Why are you going with a support worker model that has shown that children have died, and you know that, but you’re not talking about that in your video?

All of those cases have been reported to the coroner, and as far as our research has shown, the coroner has not reported yet.

Now, here’s another insight. So, hospital policies and procedures need to be created to transition from ICU to the ward. Let that sink in. Hospital policies and procedures have to be created to take a ventilated child with tracheostomy from the ICU to the ward. So, don’t you think policies need to be created for taking a ventilated child, an ICU patient, home? And yet you’re not talking about that.

Well, we, as Intensive Care at Home, being the highest quality provider in the country, third-party accredited and adheres to best practice standards, we have those policies and procedures. We can even help you.

So, it makes me wonder why the Monash Children’s Hospital or the RCH have no interest in bringing evidence-based standards into the community but hang on to an outdated model that has shown to kill children. Let’s call a spade a spade here. This outdated model has killed children.

Furthermore, they’re talking about complex care at the Children’s Hospital employing disability support workers, as well. Again, being an industry insider, we know that there’s a high staff turnover. The issue with disability support workers through complex case, they need to do their competencies every three months, and that also means that if they’re not working for a few weeks, there’s often delays. Then, there’s gaps on rosters. That means children go back to hospital then because there’s no staff. We’ve seen this.

For anyone denying this, please show me the evidence. We’ve seen it. So, it’s a very leaky model that has shown to kill children.

Furthermore, why would a hospital in the home staff even need to be trained? With Intensive Care at Home, all of our staff have a minimum of two years critical care nursing experience, adults and children. There’s no other organization in the country that brings a higher level of skillset in the community when it comes to ventilation and tracheostomy. We are employing hundreds of years of critical care nursing experience combined in the community that is unmatched.

So, why does the Children’s Hospital or Monash Children’s Hospital go down this extremely, extremely dangerous path of letting support workers basically look after an ICU patient? Why are you not bringing support workers into ICU? Please explain to me.

If a support worker can look after an ICU patient, why aren’t there no support workers in ICU? Are we having second-class patients in the community? Is that what you are creating here?

Furthermore, you’re talking about the parents being trained. Now, let me tell you this once again. The evidence shows that with all the deaths that I’ve been referring to, there have been at least two parents that were involved in the medical emergencies that they couldn’t manage. Your training is not good enough because even a critical care nurse needs to do regular training to keep updating their skills. A parent or a support worker is not a critical care nurse.

Are you calling a support worker when there’s a medical emergency in ICU? Why not? Are you asking the hospital orderly to manage a blocked tracheostomy? Why not? So, why are you applying those standards in the community that have shown to kill children?

In any case, I think I’ve said enough on the topic, and I’ve said my piece. I can only hope that this family will be in good hands.

Also, what is important to know here is the family is 90 minutes away from the hospital. Don’t you think that with 90 minutes away from the hospital, you would want critical care nurses, 24 hours a day, to avoid hospital readmissions? Don’t you think that with a family where English is not their first language, wouldn’t you think that to apply the best care for them in the community?

Before anyone says here the NDIS is not funding nursing care, that’s a whole lot of nonsense. The NDIS is funding 24-hour nursing care because otherwise we would not be in business. So, with the right NDIS support coordinator, 24-hour nursing care will be funded for this particular child.

Also, there has been a court case in November 2022 where the federal courts decided for a patient, an NDIS patient or NDIS participant, to have registered nurses for catheter care, PEG tube management, for diabetes management, insulin management instead of a support worker. Common sense. A support worker cannot manage a catheter, cannot manage a PEG, cannot manage diabetes with insulin.

So, if that court case says that registered nurses are needed for catheter care, diabetes management, PEG Tube management, how can we even remotely consider that a support worker that might have worked at Kohl’s last week, with all respect to anyone working at Kohl’s, or might have worked anywhere else in a grocery store, and now we are letting them do intensive care work. Let that sink in. Let that sink in and think about it. Once again, it is like flying the airplane with a cabin crew and not with a pilot.

So, if the Children’s Hospital or Monash Pediatric Hospital in the home wants to engage with us, we are here. You know that we’ve done work for you guys in the past, and you know that we have done good work in keeping your kids at home predictably and keeping them alive predictably. You know where we are, you know our track record, and that’s all I can say.

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

We are employing hundreds of years of intensive care and critical care nursing experience combined in the community, and that is unmatched in 2024 in Australia. No other provider brings this high level of skill into the community.

We’re also the only provider in Australia in 2024 that has actually third-party accreditation for Intensive Care at Home nursing, which obviously includes ventilation and tracheostomy for adults and children. There’s no other provider in Australia that has achieved that level of accreditation in the community.

Now, if you’re at home already in a similar situation, maybe your child is at home with support workers, and you realize it’s not working, or you are stuck in hospital, and you want to go home, please reach out to us. We can help you with the necessary funding and with the necessary staff. We can help you with the advocacy. We can help you with the funding, and we’ve done so from Day 1 successfully because otherwise we would not be in business.

We’re also providing Level 2 and Level 3 NDIS Support Coordination and can help you and your family to get on the NDIS. We’re also providing TAC case management. We can help you with obtaining the right funding through the right funding scheme, that’s part of our skill set.

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. Or if you’re looking for funding for more nursing care and you don’t know how to go about it, I also encourage you to reach out to us. We can help you with the advocacy. We also provide specialist NDIS nursing assessments, which I doubt has been done for this child that I’ve been talking about. There has been no specialist nursing assessment done because any critical care nurse in their right mind would not recommend support workers. No critical care nurse in their right mind would recommend a support worker.

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

Because we are 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 very vulnerable. It’s all about building those critical relationships and having regular and stable teams.

So, if you are looking for agency work where you can come and go, this may not be the right fit for you because we’re looking to engage with you on a long-term basis, and our clients want to engage with you on a long-term basis. So, it’s all about building critical relationships long-term so that it remains a win-win situation for everyone.

If you’re an intensive care specialist or ED specialist, we also want to hear from you. We are currently expanding our medical team, as well. We can help you to eliminate your bed blocks in ICU, in ED for your long-term patients or for your frequent flyers. We had to help you to take your pressure off your ICU and ED beds. 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, and respiratory wards, please reach out to us, as well. We can help you there.

Lastly, if you are 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, contact us at intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].

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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.