Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults & Children with Tracheostomies whilst providing quality care and where we also provide tailor made solutions for hospitals and Intensive Care Units to save money and resources where we provide win-win situations for all of our stakeholders and clients.
So 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, I want to focus more on motor neuron disease patients and truth if they have a tracheostomy or not.
Is it True that Patients with Neuron Motor Disease with Tracheostomy have a better Quality of Life at Home Rather than in ICU?
So after having worked in intensive care and also with intensive care at home for over 20 years, I have found very different approaches when it comes to tracheostomies for MND or motor neuron disease clients.
When I first started working with intensive care at home in Germany over 20 years ago, we were looking after many MND clients at home that had a tracheostomy and they overall reported a very good quality of life or quality of end of life at home rather than spending time in ICU or being denied a tracheostomy in the first place and basically often dying a long and painful death on non invasive ventilation such as BIPAP or CPAP.
The best example to give you there is probably Stephen Hawking. Stephen Hawking lived with MND for decades on a ventilator with a tracheostomy and look at his contribution to science and to humanity. And he really lived life to the fullest, even though he had many perceived limitations with MND, he was paralysed, ventilated and had a tracheostomy.
So with intensive care at home with what we’re currently doing, we’re also having some clients with MND on ventilation with tracheostomies. But unfortunately, my experience here in Australia is that, not many patients with MND actually get offered a tracheostomy. And I believe, there is clearly some misinformation for patients that suffer from MND because very few MND patients get offered a tracheostomy.
This is wrong on all levels and MND patients need to be given a choice.
As the disease is progressing and the ability to breathe is fading away MND patients need to be offered a tracheostomy and ventilation so they can actually have a choice to prolong their life and go home with a service like intensive care at home.
Whilst this might be a new approach in Australia, it’s once again something that has been successfully offered to MND patients in Germany for over 20 years.
MND patients therefore can live at home with ventilation and tracheostomy in the surroundings and the comfort of their own home with services like intensive care at home.
From my experience if MND patients don’t get given a choice they are denied life prolonging treatment.
The rhetoric especially in intensive care units about a tracheostomy not being ‘appropriate’ is completely inappropriate as most ICU’s in Australia still live in the dark ages when it comes to intensive care at home services.
The rhetoric in ICU’s about tracheostomies not being able to provide quality of life for MND patients is rhetoric that comes from a place of ignorance and not being able to look outside of the box and not researching about what is already happening in the community and what has happened in the community overseas for decades.
Again with my experience in intensive care, even MND patient, for example, goes to intensive care on noninvasive ventilation, such as BiPAP or CPAP and the question is being asked, should we intubate a patient maybe for a pneumonia especially aspiration pneumonia can be quite common for patients with MND.
ICU teams might talk to patients or to family saying, “Oh, well, if we intubate you and we can’t get you off the ventilator, you wouldn’t qualify for a tracheostomy because you wouldn’t have any quality of life down the track anyway.”
Now that is anything but further from the truth than reality shows because again, especially in Europe, there are many people living a very good quality of life or quality of end of life in the community with MND with a tracheostomy, because they have specialist services at home, like intensive care at home.
And also here in Australia now, intensive care at home, we are looking after two patients with a motor neuron disease in the community that are fully ventilator dependent, 24 hours a day that have tracheostomies and they both report very good quality of life overall and they live with their respective families, their wives, and their children. And that’s how it should be.
The alternative would have been for both of those patients to die on noninvasive ventilation probably die a very slow and painful death.
So, you know, clearly ICUs often don’t know what’s happening in the community. ICUs are very good at saving lives in ICU. But they’re also very good at painting negative pictures for families. And ICUs are very good at painting a doom and gloom scenario without really understanding what services are available in the community because by us bringing intensive care into the home, those patients actually can have a very good quality of life/quality of end of life.
And also from a financial perspective, in ICU, please give patients options and don’t just say, people won’t have any quality of life, because that is up to the individual to decide what they accept as quality of life that is acceptable for them. That’s not for ICUs or doctors or for nurses to decide.
ICUs job is to give patients choice and freedom to live the life like as they please, and thankfully, in a country like Australia, where there are enough resources to get patients home, it is all about choice and freedom for patients and their families.
Furthermore, with a service like intensive care at home, we are actually reducing the cost of an ICU bed by around 50%. So the cost argument goes out of the window with that. Patients have a right to live and patients have a right to be given choice, and that is the bottom line.
So I hope that helps to educate MND patients, their families, but also ICU is about options that are available for people in the community that create actually a win-win situation for everyone.
So thank you for tuning into this blog.
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.