Sunday, April 14 2024

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.

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.

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