June 30, 2017, Friday
A Boy, His Parents, Doctors, and the Government
Today, the case of a little boy who is soon to die.
His name is Charlie.
(Here is a photo of Charlie)
He was born looking quite normal, about 10 months ago, in England, but he suffered from a rare, and lethal, cellular condition for which no cure is known.
After many months of care in a British hospital, doctors told his parents that they could do nothing more.
However, his parents, Chris Gard and Connie Yates, learned of new — but still experimental — treatments in the United States.
Thinking they might try to heal Charlie with these treatments, they raised more than $1.5 million through an internet appeal to take him from England to America.
But doctors in England argued that the parents were not really considering Charlie’s best interests.
The British doctors argued that what the parents proposed was really to “experiment” on their child, so the British doctors refused to accept the parents’ proposal to remove the child from the hospital and fly him to America, all the while attached to special life support breathing equipment, which he needs to stay alive.
The parents appealed the decision, taking the matter to British courts.
But at each level, the British court system sided with the doctors and the hospital.
The proposal to withdraw the child from the hospital was rejected.
The parents recently made a final appeal, to the European Court (I do not understand what the European Court has to do with a British family and hospital, especially since Brexit, but evidently the European Court has some sort of jurisdiction in Britain). The European Court earlier this week rejected the parents’ appeal.
And so, the British hospital is reportedly about to take little Charlie off of life support, and, according to all accounts, Charlie will soon expire due to an inability to breathe on his own. (The latest reports suggest that the hospital has decided to give the parents another day or two with the child, before taking him off of the respirator; link).
This evening at 7 p.m. in St. Peter’s Square in Rome there will be a Rosary prayed for Charlie and his parents, and all involved in this case.
Of course parental emotion sometimes trumps reason. Parents will attempt everything possible to save their children, even refusing to accept the fact that a certain situation cannot be healed or cured by medical means.
But in this case, where the parents in their desperation found the funds to try one last possibility to heal their child, it seems that the doctors, the courts, and the European Court, should grant the parents their right, as parents, to have the ultimate responsibility for their child, and allow them to do everything they can to save his life.
So what has occurred in this case seems a miscarriage of justice.
And, this case could be become a precedent in future for limiting the rights of parents to care for their children.
For this reason, it is an important case and worth knowing about.
For the Vatican, Archbishop Vincenzo Paglia, head of the Pontifical Academy for Life, issued a statement today reaffirming the Church’s teaching that it is immoral to end any human life by an intentional act, including by suspending nutrition or hydration (“non si può mai porre in essere alcun gesto che metta fine intenzionalmente a un’esistenza umana compresa la sospensione della nutrizione e dell’idratazione”).
“The will of the parents must be respected and heard” (“va rispettata e ascoltata anzitutto la volontà dei genitori”), Paglia said.
But he then added: “At the same time, it is necessary to also help them to recognize the burdensome peculiarity of their situation, such that they cannot be left alone to take such sorrowful decisions” (“al contempo, è necessario aiutare anche loro a riconoscere la peculiarità gravosa della loro condizione, tale per cui non possono essere lasciati soli nel prendere decisioni così dolorose”).
May eternal light shine upon Charlie, and may he rest in peace, and may his parents be comforted in their sorrow.
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Here is a BBC account of this case (link):
Charlie Gard parents lose European court appeal
27 June 2017
Judges at the European Court of Human Rights have rejected a plea from the parents of terminally-ill baby Charlie Gard to intervene in his case.
Chris Gard and Connie Yates lost their final legal bid to take their son to the US for treatment.
Specialists at Great Ormond Street Hospital believe Charlie has no chance of survival.
The court agreed, concluding that further treatment would “continue to cause Charlie significant harm.”
Charlie is thought to be one of 16 children in the world to have mitochondrial depletion syndrome, a condition which causes progressive muscle weakness and brain damage.
His parents had previously seen a Supreme Court challenge to continue Charlie’s life support fail.
European Court judges have now concluded it was most likely Charlie was “being exposed to continued pain, suffering and distress” and undergoing experimental treatment with “no prospects of success… would offer no benefit.”
They said the application presented by the parents was “inadmissible” and said the court’s decision was “final.”
The court “also considered that it was appropriate to lift the interim measure” which had required doctors to continue providing life support treatment to Charlie.
BBC health correspondent Fergus Walsh said it is likely Charlie’s life support machine will be turned off within a few days following discussions between the hospital and his family.
Charlie Gard: Timeline of parent’s legal battle:
3 March 2017: Mr Justice Francis starts to analyse the case at a hearing in the Family Division of the High Court in London
11 April: Mr Justice Francis says doctors can stop providing life-support treatment
3 May: Charlie’s parents ask Court of Appeal judges to consider the case
23 May: Three Court of Appeal judges analyse the case
25 May: Court of Appeal judges dismiss the couple’s appeal
8 June: Charlie’s parents lose fight in the Supreme Court
20 June: Judges in the European Court of Human Rights start to analyse the case after lawyers representing Charlie’s parents make written submissions
27 June: Judges in the European Court of Human Rights refuse to intervene
Charlie’s parents, from Bedfont, west London, raised £1.3m on a crowdfunding site to pay for the experimental treatment in the US.
Ms Yates had already indicated the money would go towards a charity for mitochondrial depletion syndromes if Charlie did “not get his chance.”
“We’d like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.
“If Charlie doesn’t get this chance, we will make sure that other innocent babies and children will be saved,” she said.
Great Ormond Street Hospital said the decision marked “the end of what has been a very difficult process” and its priority was to “provide every possible support to Charlie’s parents as we prepare for the next steps.”
“There will be no rush to change Charlie’s care and any future treatment plans will involve careful planning and discussion,” a hospital spokesman said.
In April a High Court judge ruled against the trip to America and said Charlie should be allowed to die with dignity.
Three Court of Appeal judges upheld the ruling in May and three Supreme Court justices dismissed a further challenge by the parents.
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And here is information about the case from the website of the London hospital where Charlie has been since last October (link):
Frequently asked questions about the Charlie Gard court case
Great Ormond Street Hospital for Children (GOSH) has been contacted by many people who share our concern for Charlie, and his parents, and ask for information about the very difficult decisions surrounding Charlie’s care.
As this is a very complex case, we have provided the information below in the form of an FAQ to help those contacting us to understand how Charlie is being cared for at Great Ormond Street Hospital.
Full details about Charlie’s treatment remains confidential and the content of the FAQs is based solely on information that is already in the public domain as a result of the court process. No new information is included out of respect for Charlie and his family.
We hope that those contacting the hospital respect the confidentiality of Charlie and his family and so appreciate that we cannot respond to individual requests for information.
If you would like to read the full details of the legal decisions, please refer to the following sources:
High Court decision on the British and Irish Legal Information Institute website.
Court of Appeal decision on the British and Irish Legal Information Institute website.
Supreme Court decision available from the UK Supreme Court’s You Tube channel.
Who is Charlie Gard?
Charlie Gard is a GOSH patient who is currently in our intensive care unit.
What is his condition?
Charlie’s condition is exceptionally rare. He suffers from an inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”.
Charlie suffers specifically from the RRM2B mutation of MDDS.(1)
Charlie’s brain, muscle and ability to breathe are all severely affected. In addition, Charlie has congenital deafness and a severe epilepsy disorder. Charlie’s heart, liver and kidneys are also affected.(1)
Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided.(1)
Charlie’s eyelids cannot stay open and his eyes point in different directions because of muscular weakness. Charlie’s retina would struggle to develop and his brainwaves suggest that he is not going to be able to lay down normal visual patterns that should be learned at an early age. Eyesight is not something you’re born with, it develops over time.(2)
Why is there no treatment available at GOSH?
There is no cure for Charlie’s condition which is terminal. GOSH explored various treatment options, including nucleoside therapy, the experimental treatment that one hospital in the US has agreed to offer now that the parents have the funds to cover the cost of such treatment. GOSH concluded that the experimental treatment, which is not designed to be curative, would not improve Charlie’s quality of life.
How did GOSH come to this decision about his treatment?
GOSH’s clinicians had to balance whether this experimental treatment was in his best interests or not.
One of the factors that influenced this decision was that Charlie’s brain was shown to be extensively damaged at a cellular level. The clinician in the US who is offering the treatment agrees that the experimental treatment will not reverse the brain damage that has already occurred.
The entire highly experienced UK team, all those who provided second opinions and the consultant instructed by the parents all agreed that further treatment would be futile – meaning it would be pointless or of no effective benefit.(1)
Why is there a court process?
When parents do not agree about a child’s future treatment, it is standard legal process to ask the courts to make a decision. This is what happened in Charlie’s case.
What is the legal process?
GOSH applied to the High Court for judges to decide whether withdrawal of ventilation and providing palliative care instead of experimental treatment was in Charlie’s best interests.(1)
The High Court ruled this was in Charlie’s best interests on 11 April 2017.
Charlie’s parents then appealed to the Court of Appeal.
The Court of Appeal ruled on 25 May 2017 that the High Court decision still stood and that it would be in Charlie’s best interests to be allowed to die with dignity.
The parents have applied to appeal to the Supreme Court. The Supreme Court ruled on 8 June 2017 that the Court of Appeal and the High Court decision still stood and that it would be in Charlie’s best interests to be allowed to die with dignity.
Why has the legal process lasted so long?
Legal processes take time and the courts are doing their best to expedite the process. All parties are adhering to the legal process.
The parents have raised money for the treatment, why can’t it take place?
The High Court and the Court of Appeal have ruled it is not in Charlie’s best interests to receive the experimental treatment in the US.
Even if the treatment does not work for Charlie, won’t it help other children in the future?
The courts base their decisions for treatment on what is in Charlie’s best interests, not what is in the best interests of medical science.(1)
What about the parental rights?
Although Charlie’s parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgment in the child’s best interests.(1)
For more details on parental rights during medical treatment, please access the British Medical Association website.
What can you tell us about Charlie’s care?
While we cannot discuss confidential information about Charlie’s care, any child who is as unwell as Charlie will receive round the clock care from a team of highly experienced and specialised nurses, doctors and other health professionals.
Care for children who are ventilated, as Charlie is, might include suctioning to take out extra fluid when a child is not able to cough for themselves, having their vital signs constantly monitored, regularly turning a child to try to prevent pressure sores if they are unable to move independently and trying to ensure a child’s skin is in optimal condition even though they are constantly connected to a ventilator.
In his High Court ruling, 11 April 2017, Mr Justice Francis said: “Charlie has been served by the most experienced and sophisticated team that our excellent hospitals can offer.”(1)
In the Court of Appeal ruling, 25 May 2017, Lady Justice King said: “Charlie and his parents have the benefit of being treated at not only the centre of excellence that is Great Ormond Street Hospital, but of his having been under the care of a world-leading expert on mitochondrial disorders. I would wish to acknowledge the skill and care given to Charlie by the doctors and nurses at Great Ormond Street.”(2)
If the court rules in favour of a withdrawal of treatment order will the life support machine be turned off straight away?
At Great Ormond Street Hospital, our priority in situations like this is to work closely with the family to discuss the next steps in their child’s care. In Charlie’s case we have been discussing for many months, how the withdrawal of treatment may work. There would be no rush for any action to be taken immediately. Discussions and planning in these situations usually take some days – based on the experience of our clinical teams.
References
1. The judgment delivered by Mr Justice Francis in the High Court of Justice Family Division on Tuesday 11 April 2017.
2. The judgment delivered by Lord Justice McFarlane, Lady Justice King and Lord Justice Sales in the Court of the Appeal on Thursday 25 May 2017.
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