The struggle of Charlie Gard caught the attention of the world. He was a British infant who died last July after a long legal battle between medical staff at London’s Grand Ormond Street Hospital, and his parents.
Now that the case has "closed" and the controversy faded somewhat - the story had actually been the subject of intense journalistic coverage, and a battlefield of ideological controversy and mass media commercial exploitation as well - it is worth going back to the case and looking at what can be learned from this sad story.
Let’s summarise the story
Only a few weeks after he was born, Charlie was diagnosed with a rare genetic disorder. Hospitalized, he was initially kept alive with artificial respirators. However after attempting various therapies, medical staff decided to cease treatment and let the infant die. This was done against the wishes of his parents who insisted on the use of experimental treatments.
The delicate issue ended in the British courts and gave rise to contradictory rulings. The first was ruled in favour of the parents, the second of doctors. Mrs Gard also appealed to the European Court of Human Rights, which also ruled in favour of the physicians.
Charlie’s parents wanted to bring the baby to America at their own expense (they had managed to collect the amount needed via social networks) to try an experimental cure, but the infant was prevented from leaving his native country. Charlie parents were also offered the chance to bring the infant to Italy – to Rome’s Bambino Jesus Hospital, where doctors had offered to treat him. This was also refused for ‘legal reasons’.
Many shadows, ambiguities, bureaucratic interferences and differing opinions accompanied this tragic story, with reports framed differently by media around the world.
There was big noise and great confusion over the situation: the average reader, even if eager to be informed but not familiar with the scientific arguments discussed, struggled to understand what was actually happening - what were the key issues at stake (such as the risks and the benefits of possible experimental care) and why “no” was constantly repeated despite there being structures willing to welcome the baby.
There were also those who spoke of the work of doctors as an attempt to practice euthanasia without obeying this intention, and who claim that they just wanted to interrupt treatments that fell within the therapeutic framework. It is certain that the government's decision to assign to the parents a (euthanasia-friendly) lawyer as Charlie's legal representative did not calm the parents or the public view of the situation. They had already a lawyer, but the state, via an office with links to the Ministry of Justice, chose one for Charlie: Victoria Butler-Coler, president of the pro-euthanasia association "Compassion In Dying". When parents discovered this, and denounced this conflict of interest, they were ignored.
Drama breaks loose
Adding fuel to the fire, there were other side issues. Here is a few:
- Greg Burke, director of the Vatican Press Room, twitted on the issue and the tweet was relaunched by the media as the Pope's desire for the parents to be heard. This generated controversy among Catholics over the scope and meaning of the papal tweet;
- A Trump’s tweet,followed by a decision by the US Senate to approve an amendment to give citizenship to Charlie Gard and facilitate the transfer and receive care;
- The offer by the Bambin Gesu Hospital for a trip to Rome to try new treatments, and the disqualification of the prestigious Vatican Hospital by the Associated Press agency, which brought up past controversies involving the administrative and economic management of the hospital.
In short, in war, especially if it’s ideological, all available weapons are acceptable because all contenders are serving their good cause . In the scrum everybody gets his share: those who act in good faith and those who exploit the conflict, as speculators do in wars.
The conflict also affected the medical class. Even among those in the industry there were very different perspectives. There were doctors who fully supported the doctors of GOSH and saw the unnecessary, though comprehensible attempt of two desperate parents; but there were doctors, such as Dr. Hirano, who has agreed to put his name and face in all this affair and who argued that there could be some other possibility, just as Charlie's dad and mom did not get tired of repeating (see, for example, Charlie Gard, the judge asks for new data. The US doctor: "Trying Therapy: Chance From 10 to 50%").
The role of the media
Confusion was amplified by the vastly different perspectives of the media, often dictated by pre-existing ideologies or by different concepts of "dignity of the human being," "quality of life," "respect for life," and which a priori determined how the story was told. Or, perhaps, the media reflected like a mirror the climate of uncertainty that this affair generated.
That the media would be interested in this issue was obvious, as the tale itself was simultaneously dramatic, moving, complex, and full of shadows. It was inevitable that the public would be interested: on the one hand, we had two suffering and combative parents, clinging to hope and ready to marshal courts and hospitals around the world; on the other, judges and doctors who held the sceptre of law and science in their hands and who could be seen either as cruel and insensitive executioners of the law or unyieding authorities.
Among the various attitudes of the media, one could distinguish the following:
- Some media outlets agreed with the opinions of the GOSH's physician, but at the same time understood the suffering and the desires of the parents. This is the case with one of the main Italian newspapers The Corriere della Sera;
- Other media agreed unwaveringly with doctors, silently hiding the "inexperienced parents" and anyone who criticized the opinion of doctors. We refer, for example, to the well-known British newspaper The Guardian, that did not hold the medical opinion as controversial;
- Some media reports raised doubts about the doctors' work, such as Avvenire's Catholic Italian newspaper, which also closely followed the events related to the possible transfer of the baby to the Bambin Gesù Hospital in Rome, prevented, in the end, for legal reasons;
- The GOSH's physician doubts about the work of the doctors, however, was also the US newspaper The New York Times , according to which nobody can in their opinion define what life can be considered worthy of being lived, and that everyone must be left free to self-determination: in this case, parents had the right to decide for the child. The American newspaper, from a liberal position, was on the side of the parents. But this was not based on the value of the life or dignity of every person, but on the autonomy of it. It is interesting to note how this story has been portrayed in the same sections of newspapers and magazines that in many fields support very different ethical positions, such as the Italian newspaper Avvenire and the American The New York Times;
- Other media have accused judges and doctors of condemning this child to death, putting him to death as a matter of fact for not allowing other tries;
- Some English tabloids, such as The Sun and Daily Mail, were on the side of the parents, giving them voice and explaining some of the aspects that other media - including the newspapers that are generally hold as more accurate and credible. - neglected.
They are just examples of a strong opinion division, visible both within the international press and in public opinion.
Faced with so many uncertainties, the risk was to fall into sentimentalism, in pietism; to take a more "gut" position than to "head" or to take rigid positions that cradled with the love and child shown by the parents and with the hope offered by various experts.
Some rays of light and hope
One thing, however, is certain: in a society where autonomy and subjective freedom is exalted, a child's fate is left to a decision by a technician, an expert, effectively removing paternity from his parents and ignoring the discordant opinions of other or experts.
The widespread ideology in the West that sustains the ultimate criterion of autonomy of the will (if everyone has the right to decide what is right and what is wrong… who can really say the last word? ), it is contradictory: in fact, it was given to health managers, lawyers and other authorities the power to decide against the opinion of two parents...
Here are the consequences of the relativism of values
One positive aspect is that Charlie, though only living a few short months that confined him to a hospital bed, is that his life helped expose this aberrant contradiction, awakening the common sense of many citizens and opening new angles in the field of research and enriching ethical debates. And those parents, although maybe a little excessive and "televised" in their way of telling the story, in their unity to save their baby they showed the power of unlimited love for a child, especially to those most in need of care.