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 talked about of

HAVING A LOVED ONE CRITICALLY ILL IN INTENSIVE CARE: COUNTERINTUITIVE STRATEGIES THAT WORK!

You can check out the last BLOG by clicking on the link here.

In this week’s blog I want to share another story that made headlines around the world in the last few weeks and months and this week I want to discuss

Charly Gard, the little baby who wasn’t allowed to die at home!?

Charly Gard and his parents Chris Gard and Connie Yates have made numerous headlines in the last few months.

Chris Gard and Connie Yates have made desperate pleas to the authorities in the UK, including the UK high court as well as to the European court of human rights to try and save their baby boy’s life whilst he was in PICU in London/UK.

Now, first of all I pull off my hat to Charlie’s parents Chris and Connie!

They have fought an uphill battle, they fought the authorities in the UK to get what they felt was right for their son!

They have also raised about $1.7 Million to get baby Charlie experimental treatment in the US but the high court in the UK didn’t allow the transport to the US.

Even their last desperate plea to let baby Charlie die at home was denied by the courts.

Initially the judge ruled that Charlie must die in a hospital or hospice and that dying at home wasn’t an option, apparently because a ventilator for Charly wouldn’t fit into their house.

Baby Charlie’s mother, Connie Yates, was saying that the hospital had “denied us our final wish.”

She added: “We just want some peace with our son, no hospital, no lawyers, no courts, no media, just quality time with Charlie away from everything to say goodbye to him in the most loving way.”

“Most people won’t ever have to go through what we have been through: We’ve had no control over our son’s life and no control over our son’s death.”

The question of when and where he should die — and how long he should be kept alive — became another source of acrimony between the parents and the institution responsible for his care, Great Ormond Street Hospital in London UK.

The parents had said that their last wish was to spend several days at home with Charlie before his life support was removed. But Great Ormond Street Hospital said that the “invasive ventilation” over several days required a team of intensive care specialists and that the Gard family home was unlikely to be able to meet his needs.

It’s another sign that people don’t want their loved one’s to die in an institution let alone in Intensive Care!

People don’t want the “one size fits all” approach to end of life, because that’s all hospitals and Intensive Care Units can offer!

Related article/video: 

• DO INTENSIVE CARE UNITS HAVE A “ONE SIZE FITS ALL” APPROACH TO DYING IN ICU?

The reality is that 75% of people in first world countries want to die at home and yet less than 15% of people actually do die at home.

It’s another sign that Hospitals and Intensive Care Units don’t listen to their Patients and their families!

Now, from my experience a judge claiming that a ventilator “wouldn’t fit into their home in West London” is complete and utter nonsense.

Mechanical ventilators usually fit through all doors, we have worked with many Patients at home on ventilators in our other service INTENSIVE CARE AT HOME, including oxygen generators, which are much bigger than ventilators, therefore the judge and the high court in the UK have no idea what they were talking about. Another bunch of bureaucrats trying to deny a family a basic human right to have their son die on their terms in their own home.

Eventually, the high court came forward offering the family to seek out Intensive Care specialists who could provide the family with home care and they couldn’t find any Intensive Care specialists willing to help them in the short time frames offered.

The time frames being offered were only a couple of days before life support was removed, therefore it was almost impossible to get paediatric palliative home care arranged.

Related article/video:

• HOW LONG DOES IT TAKE TO DIE AFTER REMOVING THE BREATHING MACHINE OR LIFE SUPPORT?

What a shame that nobody was willing to offer end of life care at home for Baby Charlie that the parents wanted for their baby.

We believe and we know from experience that a service like INTENSIVE CARE AT HOME could have offered this palliative care service for Baby Charlie and his parents and help them let baby Charlie die at home.

I would have required a few days preparation, but it’s possible and the high court knew that it’s possible, however high courts as well as hospitals are afraid that families get too much power!

They were probably worried that Baby Charlie could set a precedent and therefore more and more people will demand to die at home and simply don’t want to die in an Intensive Care Unit!

Nevertheless, Baby Charlie’s parents have done an amazing job in fighting for their child and in fighting the bureaucrats over what they felt was right for baby Charlie!

But one question remains.

Will we now have the courts ruling where and in which circumstances people are allowed to die?

What do you think, do you think baby Charlie should have been allowed to die at home in dignity?

Leave your comments on the blog!

Find more media exposure about Baby Charlie here

http://www.bbc.com/news/uk-england-london-40752120

https://www.theguardian.com/uk-news/2017/jul/28/charlie-gards-short-life-pitched-parents-into-turmoil-and-grief

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Your friend

Patrik