Duchenne Muscular Dystrophy Pts with Tracheostomy Have a Better Quality of Life at Home than in ICU?

https://intensivecareathome.com/is-it-true-that-patients-with-duchenne-muscular-dystrophy-syndrome-with-a-tracheostomy-have-a-better-quality-of-life-at-home-rather-than-in-icu/

Is it True that Patients with Duchenne Muscular Dystrophy Syndrome with a Tracheostomy Have a Better Quality of Life at Home Rather than in ICU?

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In today’s blog, I want to focus on Duchenne muscular dystrophy syndrome, and again, focusing on whether they should have a tracheostomy or not. So today’s question in this blog is

Is it True that Patients with Duchenne Muscular Dystrophy Syndrome with a 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 again, very different approaches when it comes to tracheostomies for Duchenne Muscular Syndrome, for Duchenne Muscular Dystrophy patients.

And obviously this Duchenne syndrome is a disease, a genetic disease that only comes up usually for children or for young adults. And often here, what I found is that, those young patients get denied a tracheostomy when it comes to the time when their breathing is failing, when they go into respiratory failure.

And patients get denied a tracheostomy to prolong their life because people think or health professionals, I should say in intensive care in particular, think that those patients wouldn’t have any perceived quality of life.

Well, nothing could be further from the truth because the fact of the matter is, that with services like intensive care at home, there is no need for someone with Duchenne Muscular Syndrome to stay in ICU for the rest of their lives.

Some literature suggests that if patients with Duchenne Muscular Syndrome have a tracheostomy and can’t come off the ventilator that they stay in intensive care for the rest of their lives.

Well, again, nothing could be further from the truth because patients can actually go home with our service intensive care at home, cut the cost of an ICU bed by 50% and provide patients and families with better quality of life and in some instances, quality of end of life for Duchenne Muscular Syndrome children and it provides a win-win situation...

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