Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM, where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have peace of mind, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
In the last BLOG I shared PART 4 of
You can check out last week’s BLOG by clicking on the link here.
In this week’s blog I want to discuss recent dramatic developments in the UK regarding Babies Alfie Evans and Isaiah Haastrup and respective decisions made by the high court in the UK and by clinicians to withdraw life support on less than two year old babies without their respective parents consent.
This discussion ties right in with another blog post I wrote mid-last year in 2017 and that you can read here
Therefore in today’s blog I want to shine the light on
Courts in the UK and the NHS are killing babies before they had a chance to live!
Charlie Gard was a toddler who died last year in a hospice in the UK even though he hadn’t even lived to his first birthday.
Charlie Gard was a highly publicised case in the media all around the world and his parents took the fight for his life to the courts in the UK to save their son’s life. They raised enough money so he could be flown to the USA for experimental treatment that had the potential to improve his severe condition.
Charlie Gard had mitochondrial DNA depletion syndrome (MDDS), a rare genetic disorder that causes progressive brain damage and muscle failure. Therefore, Charlie was life support and ventilator dependent and died as soon as mechanical ventilation was removed.
In the end the parents weren’t even granted their last wish for their son, to end his life at home, because the judge ruled, it was “impossible” to fit a ventilator into a home.
As most people know by now, with specialised services like INTENSIVE CARE AT HOME readily available in this day and age looking after Charlie Gard at home would have been a definitive possibility.
The “almighty” and “infallible” judge obviously didn’t do his homework and made the ruling out of ignorance and not because he was considerate towards Charlie or his parents.
It was a ruling convenient for the NHS also, it kept its power and they were able to empty their expensive NICU bed by removing life support and in essence letting Charlie die, rather than allowing the parents to go to another country or letting Charlie die at home.
Either way would have achieved the same outcome for the NHS, they would have emptied their “in-demand”, precious and expensive NICU/PICU bed and not have ongoing costs up to £3,500 per bed day for Charlie at Great Ormond Street Hospital in London in the UK.
Besides the discussion about Charlie’s life worth living- which had been looked at from multiple points of view- the judge deciding that it’s in his “best interest” to die and remove life support, still didn’t give the parents the opportunity to try and seek experimental treatment for their son or at the bare minimum the parents should have been granted their wish to let him die at home.
75% of people in first world countries if given a choice want to die at home and yet less than 15% actually do die at home. Marvellous statistics for wealthy first world countries in desperate need of freeing up expensive Hospital and ICU beds…
If Charlie Gard’s case wasn’t sparking enough controversy in the UK and around the world, the next cases were to follow soon that had striking similarities with Charlie Gard.
In case you haven’t heard of a boy named Alfie Evans in Liverpool in the UK, you have now and his situation has striking similarities with Charlie Gard.
Alfie Evans was born in May 2016 and was admitted to PICU at Alder Hey in Liverpool in December 2016 due to respiratory failure, secondary to an undiagnosed Neuromuscular disease with regular seizures.
Besides a brief stint outside of PICU in May last year, he remains in PICU at Alder Hey up to this day.
He’s still undiagnosed to this day.
Now we all know and appreciate that sometimes modern medicine doesn’t give us all the answers we want and that’s fine, we can accept that.
Just because Alder Hey and its medical staff haven’t been able to diagnose Alfie, does not mean he doesn’t have the right to go somewhere else-even in another country- where they believe to have a higher degree of success to be able to diagnose him.
Keeping Alfie hostage and not let him go to another country and basically kill him instead is highly unethical and highly inappropriate, in fact it’s outrageous.
What’s the hurry in removing life support? Where is the rush in killing him?
Kate and Tom Evans, Alfie’s parents have raised enough money to get Alfie treated by specialists in Italy or Germany.
Hospitals and Intensive Care Units in both countries are ready to take Alfie and give him a tracheostomy to give him time to be diagnosed and to improve his quality of life.
Just like with Charlie Gard last year, it looks like this is meant to be a display of power of the courts hand in hand with the NHS to deter other families from even trying to save their children’s lives?
Nobody is disputing that life limiting illnesses exist. The way the NHS and the courts are going about it is utterly disgusting and doesn’t make me want to believe this is happening in a developed first world country.
But it’s getting worse, at the same time while Alfie Evans and his parents are fighting to get their son treatment in another country and in essence buy him time, Isaiah Haastrup is another 12 month old toddler who sustained brain damage at birth at King’s college hospital in London.
Isaiah Haastrup, just like Alfie Evans is and Charlie Gard was on life support, the hospital also wants to withdraw life support against the families wishes, as apparently it is not in Isaiah’s “best interest” to continue to live with irreversible brain damage and ongoing life support.
Now, who is to judge what is “in the best interest” of a toddler on life support?
What all cases have in common is that families want to spend more time with their children, get them better chances of treatment and also diagnosis and letting go of them on their own terms and when they are ready for it.
Again, why the rush to kill these babies?
All of the families have in common that they wanted to seek alternative treatment outside of the UK, give their children a tracheostomy so they can have a better quality of life straight away.
It is outrageous that all of those babies, Charlie, Alfie and Isaiah have been denied a tracheostomy, even though best practice in Intensive Care clearly suggests that a tracheostomy should be done after about two weeks of mechanical ventilation with a breathing tube/endotracheal tube.
It would also improve their quality of end of life for the children if it ever came to the point.
Neither of those children was given a tracheostomy to this point and yet a tracheostomy and a potential transfer to another country to another hospital would have and could potentially extend the lives of all of those children and most likely they would have benefited from a different approach in different hospitals.
The current approach is very one-dimensional. The NHS is dragging the families to court to get approval to lawfully remove life support against the families wishes and in essence empty their expensive and in-demand PICU/NICU beds and also save money on long-term care.
The current approach also favours the dinosaurs view that the only way for a Patient to leave Intensive Care is to either die or go to a hospital ward.
What an outdated and “holding on to power at all cost” point of view.
In this day and age and for the last 20 years, with services like INTENSIVE CARE AT HOME, long-term Intensive Care Patients can go home and save the health system Millions and 10s of Millions of Dollars by providing INTENSIVE HOME CARE instead of Intensive Hospital Care!
Nobody in their media coverage has been addressing the elephant in the room and the elephant in the room is clearly the cost of Intensive Care and the demand on beds and other resources in PICU/NICU.
As long as the elephant in the room hasn’t been addressed in the media coverage, the discussions are very one sided and lead nowhere.
The PICU/NICU beds that the NHS so desperately needs to treat other critically ill children could have been available a long time ago by letting Charlie Gard, Alfie Evans and Isaiah Haastrup go overseas and continue treatment there.
The PICU/NICU beds that the NHS so desperately needs to treat other critically ill children could have also been made available a long time ago by giving Charlie Gard, Alfie Evans and Isaiah Haastrup a tracheostomy and getting them home with INTENSIVE CARE AT HOME services.
Neither of those children have been on inotropes/vasopressors as far as our research and information from the families show, therefore INTENSIVE CARE AT HOME is possible.
That would have emptied the PICU/NICU bed and it would cut the cost to less than 50% of the hospital cost and get Charlie, Alfie and Isaiah in a more Patient and family friendly environment.
Another option -especially in Charlie Gard’s case was to provide end of life care with INTENSIVE CARE AT HOME services in the last few days of his life.
That’s how other countries, mainly Germany and Australia are managing their demand on ICU beds whether it be adults or children.
And clearly this approach works.
Providing INTENSIVE CARE AT HOME services is a win-win situation whether it be for long-term treatment or for end of life care.
Again, having the judge decide that Charlie Gard can’t go home to die because he’s on a ventilator is one of the most ignorant decisions he would ever made in his entire lifetime.
Ignorance is bliss, I suppose.
Again, INTENSIVE CARE AT HOME services have been around for nearly 20 years now in Germany and for about 5 years now in Australia.
The services are enormously successful in their approaches and achieve win-win situations by providing quality home care in a Patient and family friendly environment and also by reducing the cost of an ICU bed by more than 50% and by freeing up in-demand, expensive and highly sought after PICU/NICU beds.
The UK’s Intensive Care system therefore remains 20 years behind to creating real “win-win” situations when it comes to freeing up one of their most precious resources in a hospital, whilst also saving 50% of the cost of an Intensive Care bed.
The NHS and the courts seem to be resistant to change and they seem to turn into killing machines by denying families their rights to seek treatment elsewhere.
What does the NHS have to hide? Why can’t those babies go elsewhere for treatment?
What’s the hurry in killing babies?
There is plenty of time to talk about end of life if Alfie and Isaiah don’t improve. But give them the best chance to begin with and don’t deny it to them early in their lives, just to save money and try and deter other families who are going through similar situations.
PS: Alfie’s parents have set up a Facebook group “Alfie’s Army official”. You can find the link here https://www.facebook.com/groups/alfiesarmy/?ref=nf_target&fref=nf
How can you become the best advocate for your critically ill loved one, make informed decisions, get PEACE OF MIND, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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In your FREE “INSTANT IMPACT” REPORT you’ll learn how to speak the “secret” Intensive Care language so that the doctors and the nurses know straight away that you are an insider and that you know and understand what’s really happening in Intensive Care!
In your FREE report you’ll also discover
- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
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- 5 mind blowing tips& strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
- You’ll get real world examples that you can easily adapt to your and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
Thank you for tuning into this week’s BLOG and I’ll see you again in another update next week!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update
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