The life of 10-month-old Charlie Gard hangs in the balance as doctors determine when he will die.
On Tuesday, the European Court of Human Rights (ECHR) refused a London couple the right to seek a possible life-saving treatment in the United States for their son, ruling instead for the termination of life-support.
Charlie was born with Mitochondrial DNA Depletion Syndrome, a rare genetic condition causing progressive muscle weakness and brain damage. After discovering a possible treatment and an American doctor willing to perform a trial therapy for their son, Chris Gard and Connie Yates raised over $1.6 million in donations from around the world in the hope of saving their son. However, specialists at Great Ormond Street Hospital for Children in London, where Charlie was being treated, felt the experimental therapy would not be beneficial and refused his parents their natural right to have him treated elsewhere.
In a legal battle that ensued for nearly four months, judges continually ruled in favor of the hospital’s decision, leading the couple finally to the ECHR. After consideration of the case, the European Court judge refused to intervene.The devastated couple, merely wanting life for their son, at no expense to the hospital, was refused.
In an on-line statement, the hospital explained:
Charlie is a terminally ill child with an exceptionally low quality of life. Our priority at Great Ormond Street Hospital must always be to protect the best interests of the child.
We work extremely hard to deliver the best possible care for all the children entrusted to us and use pioneering treatments, wherever possible. In Charlie’s case, we explored the request to use a therapy that had not been used before and sought independent medical opinions on what would represent the best possible treatment for Charlie.
The medical and legal consensus, confirmed by today’s ruling, is that it is in Charlie’s best interests to be allowed to die with dignity.
In this death sentence that is allegedly “in Charlie’s best interest,” we see the arrogance of an outside entity not only claiming the right to override the parents’ wishes for their child to live, but insisting that it is also within the authority of that medical facility and court system to decide how and when he will die.
It seems that after seeking the independent medical opinions, the best treatment for Charlie, according to the hospital authorities, is one that has been talked about, but not actually named by them.
A quick Internet search with the combined phrases, “low quality of life” and “die with dignity” returned results for the recently trending “therapy: euthanasia, also known, paradoxically, as mercy killing.
Hospital officials stated, “ Our priority is now to work with the parents as we continue to care for Charlie and progress towards the next steps.”
This is a hollow statement, as hospital officials continue to call all the shots concerning Charlie’s welfare, in direct opposition to the wishes of his parents.
Another of the more recent statements from the institution’s spokesperson on June 27 claimed, “There will be no rush by Great Ormond Street Hospital to change Charlie’s care and any future treatment plans will involve careful planning and discussion.”
This statement looks to be lacking in integrity also, as Gard and Yates were informed that Charlie’s life-support would be removed Friday, June 30, a mere three days later. Understandably distraught and confused, the couple met interview after interview with the same sentiments: they wanted to take their son home to die, and they wanted more time for family members to say goodbye. As of today, the hospital has agreed to grant the parents’ wishes, though the time limit is still a mystery.
Barrister Richard Gordon QC, who has led the legal team for the London couple, believes the case has raised extremely serious legal issues. As msn.com reports, “Mr Gordon suggested that Charlie might be being unlawfully detained and denied his right to liberty. He said judges should not interfere with parents’ exercise of parental rights.”
However, according to the British Medical Association:
Parental responsibility is a legal concept that consists of the rights, duties, powers, responsibilities and authority that most parents have in respect of their children.
It includes the right to give consent to medical treatment, although as is discussed in the guidance, this right is not absolute, as well as, in certain circumstances, the freedom to delegate some decision-making responsibility to others.
One might conclude that the parental rights of Charlie Gard’s parents are indeed not absolute, and that the only “freedom” they have been given in this circumstance is the forced delegation of decision-making to individuals wholly unconnected to them or their son — individuals who have granted themselves the perverse “right” to decide quality of life and to define humanity.
Photo of Charlie Gard with his Dad: Facebook