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My Mother is in ICU Needing a Tracheostomy, Is She Able to Go Home with INTENSIVE CARE AT HOME?

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 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), also home tracheostomy care for adults and children that are not ventilated, Home TPN (Total Parenteral Nutrition), home IV potassium infusions, home IV magnesium infusions, and 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 also palliative care services at home.

We are also sending our critical care nurses into the home or into residential aged care to provide emergency department bypass services.

So, today I have an email from James who says,

“Hi Patrik,

Our mom was admitted to an ICU after a heart attack on the 28th of May. She was intubated after a stent procedure in the catheter lab, and since then, her health has declined with light pneumonia, kidney shock, dialysis, bed sores, and secretions on her lungs.

At Day 13, they tried to extubate her. Extubation means the removal of the breathing tube. So, James’ mom was intubated and on a ventilator in ICU and she still is as you would see in a minute.

After 14 hours of her sitting up, speaking with us, getting her voice back, and having speech therapy and physical therapy scheduled to start the next day on the 29^th. We then got a call at 2 a.m. saying her heart rate became sporadic and her breathing labored, and they were forced to intubate her again i.e. put her back on the ventilator with the breathing tube in her mouth. They now want her to be placed on a tracheostomy and move and wean her off the ventilator or to put her to palliative care.

The palliative care doctor is being very forceful with us to make a decision: to either do a tracheostomy or to do palliative care and move her to hospice and provide end of life care and let her die. We think that my mom will be able to fight through it, as aside from her previous smoking, she was a fairly healthy active senior. Before being admitted to the catheter lab and then go to ICU, she had a stent and an angiogram in the catheter lab.

We would like to know if we should agree to the tracheostomy. If we do, can she go home with Intensive Care at Home because we would like to bring her home and rehabilitate her at home on a ventilator with a tracheostomy or even if she was not to make it, we would like to provide end of life care at home.

Also, we are an hour and 20 minutes away from the hospital. So, it would be much more convenient for us to have her at home. Any advice would be greatly appreciated. As presently, we think she’s declining rapidly while she’s on a ventilator and in an induced coma and the constant churn of nurses is causing sundowner’s syndrome and we think the familiar home environment will help with her recovery.

From James.”

Well, James, thank you so much for asking that question.

A couple of things, if your mom ends up with a tracheostomy and can’t be weaned off the ventilator while she’s in ICU, absolutely, Intensive Care at Home is the right option. Intensive Care at Home, we have been around since 2013. Intensive Care at Home services have been around since the late 1990s in Germany. So, it’s a proven model of care and don’t let anyone dissuade you from looking for the best option for your mom. Don’t let anyone push you towards palliative care if you don’t think that’s the right option for your mom and don’t let anyone push you towards ending your mom’s life if you think she can fight through.

What is also important in a situation like that, from my experience, besides having set up Intensive Care at Home since 2012, I’ve worked in intensive care for nearly 25 years in three different countries and people are much more resilient. Sometimes intensive care teams want to let families believe. Approximately 90% of intensive care patients survive, so why should your mom not survive in this situation? And even if she doesn’t, you still want to give it your best shot. I can understand that you’re mentioning about the constant churn of nurses in ICU and there’s probably no consistency in terms of the level of care that is provided. It is very different in a home care environment.

With Intensive Care at Home, we are constantly striving to have stable teams on our roster so that the same nurses go to the same client so that you know who’s coming, that you know, like, and trust our nurses, that they can provide the care to your mom, that is best for your mom. So, the bottom line is, if she can’t be weaned off the ventilator for whatever reason, and you want your mom to have a fighting chance, then you should give consent to a tracheostomy and potentially if you want to take her home, then also to a PEG (Percutaneous Endoscopic Gastrostomy) tube because she won’t be able to eat most likely with the tracheostomy. In this instance, I would agree that a PEG tube is a better option, especially for going home, than a nasogastric tube.

Also, talking about cost here. So, an intensive care bed costs $5000 to $6000 per bed day. With Intensive Care at Home, we’re approximately cutting that cost to 50% of the ICU bed in the hospital. On top of that, we are freeing up the intensive care bed, which is the most sought-after bed in a hospital. So, that in and of itself is a win-win situation. We’re cutting the cost of an ICU bed by half, and we are freeing up the most in demand bed which is the ICU bed.

Moreover, we’re improving the quality of life for your mom and for you as a family because you’re already saying that you’re an hour and a half or an hour and 20 minutes away from the hospital. So, the commute for you and your family is enormous on a day-by-day basis. Therefore, that can stop, and your quality of life will improve as well by having your mom at home. Win-win situation.

Then once we’ve organized the funding with the health funds or whichever other avenues, maybe there’s NDIS (National Disability Insurance Scheme) funding, there is maybe insurance scheme funding, we should talk about that. The funding has never really been the issue, because again, we’re cutting the cost of an intensive care bed by 50%, whoever’s funding that intensive care bed has an interest in getting that cost down. Then once the funding is organized, then we can look at hiring the right nurses for you because you want regular people that you know, like, and trust looking after your mom at home.

Like I said, you’re already talking about not having regular staff in ICU, strangers coming and going, that can be extremely upsetting for your mom, can be extremely upsetting for you as a family. So, we can certainly help you with all of what you want to achieve in this situation.

So, thank you, James, for writing in and also for having spoken to you on the phone. I’m confident we can help you take the next steps with this situation and go from there.

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

So, if you have a family member in intensive care in a similar situation, please reach out to 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].

If you are at home already and you have insufficient support, which we are finding all the time as well, that families do the work themselves but they can’t keep their loved ones at home predictably, they’re burned out, and they know the risk they’re taking is too high, that their loved ones are at risk of dying any minute because a tracheostomy and a ventilator, even tracheostomy without a ventilator or a ventilator without a tracheostomy, they are unstable airways that can only be safely managed by intensive care nurses, 24 hours a day, and that is evidence-based. I encourage you to look up our Mechanical Home Ventilation Guidelines here at intensivecareathome.com on our website so that you can see the evidence there.

We are also providing Level 2 and Level 3 NDIS Support Coordination which would be critical in a situation like that for James if your family member qualifies for the NDIS in Australia to get NDIS funding in the first place. But even if you are not qualifying for the NDIS, there’s still ways to get funding through health insurances, through departments of health, through public health or through hospitals in particular. Because once again, hospitals have an interest to free up their beds and provide the right services for their patients and their families. So, if you don’t have enough NDIS funding, for example, or if you’re not happy with the NDIS support coordinator or your NDIS plan, I encourage you to reach out to us as well.

If you are a NDIS support coordinator from another organization and you’re watching this and you’re wondering how you can get nursing care for your NDIS participants, or if you need an NDIS nursing assessment for your participant, or if you need help with advocacy for your NDIS participants for nursing care specifically, please reach out to us. We can help you because we’ve done it many, many times. We have been involved in pretty much all of the advocacy for all of our Intensive Care at Home nursing clients, including the nursing assessments.

If you are a critical care nurse and you have a minimum of two years critical care nursing experience, ideally with a postgraduate critical care qualification and you have worked in ICU, pediatric ICU, and ED, we want to hear from you as well. We currently have jobs in Melbourne, Sydney, Brisbane, Albury, Wodonga, Bendigo, as well as the Warragul area in South Gibson in Victoria.

We provide a tailor-made solution for our clients. So that means we have regular staff for the same clients because that’s what our clients want. So, if you’re looking for agency work where you can pick up shifts and come and go, that’s not going to work for us and more importantly, it’s not going to work for our clients. We are client centric. We’re also staff centric. We want to provide good work and life balance, but we are not an agency where people can come and go and pick up shifts as they please because our rosters are done in cooperation with our clients.

If you are an intensive care specialist or an ICU consultant, we also want to hear from you because we are currently expanding our medical team.

If you’re an ICU consultant or an intensive care specialist and you are currently working in ICU, we also want to hear from you because you have bed blocks in ICU. We can help you eliminate those bed blocks, and you’re not even paying for it.

If you are a hospital executive watching this, we also want to hear from you because once again, we can help you eliminate your bed blocks in ICU, ED, respiratory wards, even gastroenterology wards for home TPN. We want to hear from you as well, once again, you won’t even pay for it with NDIS funding or other funding sources.

All of that you get at intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].

If you are in the U.S. or in the U.K., please reach out to us as well. We can help you there privately.

If you like my videos, subscribe to my YouTube channel for regular updates for families with intensive care and for families in intensive care. Click the like button, click the notification bell, share the video with your friends and families, and comment below what you want to see next, what questions and insights you have from this video.

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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.