Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor-made solutions for long-term ventilated Adults & Children with Tracheostomies and where we also provide tailor-made solutions for hospitals and Intensive Care Units whilst providing quality services for long-term ventilated patients and medically complex patients at home.
In last week’s blog, I talked about,
You can check out last week’s blog by clicking on the link below this video:
In today’s blog post, I want to answer a question from one of our clients and the question today is
Can your Services at Intensive Care at Home Help My Husband with End-Stage Motor Neuron Disease to Have the Option to Live, Rather than Helping Him Die Comfortably?
I am very interested in your blog and service. My husband has end-stage motor neuron disease and is on non-invasive (NIV) BiPAP ventilation. I have tried to explore the option of tracheostomy with a medical professional as an option, or when we feel the non-invasive (NIV) BiPAP is no longer supporting him well enough, but have been met with limited evidence-based advice and/or resistance.
We want to prepare for this option as a possibility, but for motor neuron disease patients, it is not commonly offered, which we have found very distressing. When it is brought up with the medical professional, it is very clear that it is not a pathway at present in Australia. And it’s also clear that people are not comfortable discussing it, however they are comfortable discussing palliative care.
For end-stage MND, which again stands for motor neuron disease patients, the options seem only to be, “How can we help you to die comfortably?” rather than, “What options do you have to live?” if that is your choice. My husband has a good quality of life despite being completely dependent. This should be a choice that we can make and we want to make an educated decision about it.
We are NDIS funded and we are in Melbourne Australia. I would very much appreciate knowing more about your service and what is involved and how we go about exploring this option. We really hope you might be able to assist us.
What a great question and I’m very sorry to hear about your husband’s situation. Well, few explorations here, Sharon. We are looking currently after patients with motor neuron disease (MND) at home. They have tracheostomies and they’re looked after with critical care nurses, 24 hours a day funded by the NDIS.
Now, I wholeheartedly agree with you that they shouldn’t be discussing palliative care with you. They should be discussing maximizing quality of life, or in some instances, quality of end-of-life at home for people who want to live with a tracheostomy.
Now, as you’re probably well aware, they are comfortable discussing palliative care, but they’re not comfortable discussing quality of life. It’s a joke, quite frankly. Now, if you look at this situation in Europe for example, Germany in particular, patients with MND (motor neuron disease) have been getting tracheostomies for decades and they’re living at home, or people who want to live at home with Intensive Care at Home services. It’s a no brainer and it’s a choice.
People need to be given a choice besides palliative care and if they want to have a tracheostomy, they should be getting one and go home with our service, Intensive Care at Home funded by either the NDIS or it can also be funded through hospital in the home service. It doesn’t matter. It’s a win-win situation because it saves the hospital 50% of an ICU bed. It frees up the ICU bed for other critically ill patients. So, and you as a family can go home, therefore everybody is winning in a situation like this.
So yes, you absolutely should be making an educated decision about this and the education around this is that, you as a family need to make that decision, not the doctors or the medical professionals in intensive care or outside of intensive care, they should be consulting you and they should be helping you to achieve your goals, which is what we can help you with.
You can see what we’re doing and you’ve probably read and heard about it. Besides providing a hands-on Intensive Care at Home service for long-term ventilated patients, we’re also advocates. And we wouldn’t be in business if we weren’t advocates for our clients as well and if we didn’t know how to operate in this very challenging environment.
So please get back to me if you have any other questions, but we would love to help you and your husband taking the next steps, getting a tracheostomy, getting the funding through the NDIS. And then finally going home so you can enjoy time with your husband and your family in a holistic and family friendly environment.
Take care for now.
Now, if you have a loved one in intensive care and you want to go home with our service intensive care at home and if you want to find out how to get funding for our service and how it all works, please contact us on one of the numbers on the top of our website, or send me an email to [email protected] That’s Patrik, just with a K at the end.
Please also have a look at our case studies because there we highlight more about what we can do for clients, how clients can live at home with ventilation and tracheostomies and you can look at our case studies as well at our service section.
And if you are at home already and you need support for your critically ill loved one at home, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of that.
And if you are an intensive care nurse or a pediatric intensive care nurse with a minimum of two years, ICU or pediatric ICU experience, and you ideally have a critical care certificate, please contact us as well. Check out our career section on our website. We are currently hiring ICU and pediatric ICU nurses for clients in the Melbourne metropolitan area, Northern suburbs, Mornington Peninsula, Frankston area, South Gippsland, as well as Wollongong in New South Wales.
So we are also an NDIS, TAC (Victoria) and DVA (Department of Veteran affairs) approved community service provider in Australia. Also have a look at our range of full service provisions.
Also, we have been part of the Royal Melbourne health accelerator program in the past for innovative healthcare companies.
Thank you for watching this video and thank you for tuning into this week’s blog.
This is Patrik from intensive care at home, and I’ll see you again next week in another update.