The heart-wrenching story of Charlie Gard, the terminally ill British baby whose parents fought for the right to take him to the US for experimental, extraordinary treatment but whose request was denied by the courts, has raised many ethical issues.
Charlie Gard passed away on Friday night, just one week shy of his first birthday.
The case attracted a great deal of international attention, including that of Pope Francis, British Prime Minister Theresa May and US President Donald Trump. In a bid to determine how Malta would or should react in such a case, The Malta Independent on Sunday spoke to a number of professionals to gain their informed perspective on the case.
Professor of Family Medicine, Bioethics & Patient's Rights Pierre Mallia said that, in such a scenario, an issue from an ethical perspective is that doctors are obliged to consider whether treatment is futile. "The distinction, as in this case, of whether a treatment is futile or simply extraordinary can be difficult," he said, "and a decision in the best interest of the patient has to be taken."
'Extraordinary' treatment is used to describe means or measures which are usually not available and do not offer a reasonable hope of benefit and cause unbearable pain and suffering. 'Ordinary' treatment is used to describe the means of prolonging life which are available, offer a reasonable hope of benefit and do not cause unbearable pain and suffering.
Prof. Mallia added that whether to accept extraordinary treatment or not is another issue. "People need not accept extraordinary treatment; in this case parents decide on behalf of the child. In the Charlie Gard case, the parents chose this extraordinary care," he said.
Charlie Gard's story
Eleven-month-old Charlie Gard was found to have a rare genetic condition shortly after he was born in August 2016. The disease is a rare genetic condition called mitochondrial DNA depletion syndrome (MDDS), which causes loss of muscle function and brain damage.
Charlie was being treated at London's Great Ormond Street Hospital, where decisions regarding his care were taken to various law courts where the eventual ruling to take him off life support was against the wishes of his parents, Chris Gard and Connie Yates.
The parents campaigned to keep Charlie alive on life support and travel to the United States for experimental treatment; however, the courts maintained the experimental treatment was "unjustified" and might cause Charlie more suffering without doing anything to help him.
The experimental treatment, called nucleoside therapy, had shown success in reducing the symptoms of some types of mitochondrial disease in laboratory mice. The treatment has also been administered to a small number of children who had also shown improvement. However, the treatment had never been used on either mice or humans with the type of mitochondrial disease which Charlie suffered from, according to court documents.
At its heart, the case pitted the right of parents to decide what is best for their children against the authorities' responsibility to uphold the rights of people who cannot speak for themselves. Under British law, children have rights independent of their parents, and it is usual for courts to intervene when parents and doctors disagree on the treatment of a child.
Last week, Charlie's parents abandoned their battle for treatment, saying time had run out and the proposed therapy would no longer be effective because Charlie had severe and irreversible muscular damage. "We are about to do the hardest thing that we will ever have to do, which is to let our beautiful little Charlie go," Chris Gard said.
The couple insisted that Charlie could have been helped had he received the treatment sooner.
Following the parents' end of the legal battle, a judge ruled that Charlie must be moved to hospice care and be taken off life support.
Direction from court sought when there's 'unusual case' of parent/doctor disagreement - Health Minister
Minister for Health Chris Fearne explained to The Malta Independent on Sunday that in the unlikely case where there is disagreement between parents and medical professionals, the court's advice is sought.
"Medical treatment to minors, under 16 years of age, requires parental or a guardian's consent at all stages. In the unusual case where there is disagreement between the parents and medical professionals, direction from the court is sought," he said.
Bioethics professor Pierre Mallia added that in the case of Charlie Gard, the courts took a decision which, in their view was in the best interest of the child. "They have a very robust health care system where social services can take the parent to court, (as in the case of the Maltese Siamese twins), when they feel that a decision which is not in the best interest of the children is being taken," he said.
He added that the offered treatment and parental rights must also be taken into consideration.
"Given that innovative treatment was being offered is something that the court had to take into consideration," he said. "From a moral point of view, we also have to respect parental rights in my opinion. But there is a difference between moral issues and applying the law in a court of justice."
These situations 'are not uncommon' in paediatric intensive care unit
When contacted, paediatrician Joseph Mizzi told The Malta Independent on Sunday that such delicate situations are not rare.
"These situations are not uncommon in our paediatric intensive care unit," Dr Mizzi said. He believes that while "it is perfectly right to fully support the child until the diagnosis is firmly established, if the child has a degenerative, incurable and lethal condition, it is not in the best interest of the child to prolong his suffering."
"The child should be allowed to die in a dignified way," he added. "This is certainly not easy for the parents to accept, but sadly, there is nothing that anyone can do for these poor kids.
"Many a time I have sat next to parents holding their dying child in their arms and I have cried with them."
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