Motor Neurone Disease Pts with Tracheostomy have a better Quality of Life at Home Compared to ICU!

https://intensivecareathome.com/is-it-true-that-patients-with-neuron-motor-disease-with-tracheostomy-have-a-better-quality-of-life-at-home-rather-than-in-icu/

Is it True that Patients with Neuron Motor Disease with Tracheostomy have a better Quality of Life at Home Rather than in ICU?

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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.

In today’s blog, I want to focus more on motor neuron disease patients and truth if they have a tracheostomy or not. 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.

Continue reading at: https://intensivecareathome.com/is-it-true-that-patients-with-neuron-motor-disease-with-tracheostomy-have-a-better-quality-of-life-at-home-rather-than-in-icu/