Charlie Gard: 10 key points of the case deciphered


While Charlie’s parents’ last hope, i.e., the European Court of Human Rights (ECHR), has just ruled in favour of the various British courts who decided to end their child’s life, the Cardinal Elio Sgreccia, former president of the Pontifical Academy for Life, has published an analysis[1] pointing out the interrogations which are yet to be answered concerning this case; Gènéthique is publishing the entire document. Meanwhile, Mrs Mariella Enoc, the president of the paediatric hospital Bambino Gesù (baby Jesus) attached to the Vatican, has declared she was willing to “welcome Charlie in Rome, if his parents wished and if his state allowed him to be moved”.

 

These are dramatic hours. Painfully and powerless, we are living the latest developments and adverse outlines of little Charlie Gard’s case. Once he has been administered deep sedation, this 10-months-old newborn baby, suffering from infantile mitochondrial encephalopathy, should be accompanied to death by the withdrawal of artificial hydration and ventilation. Thus, is the conclusion after various judicial decisions rendered by three different English Court, at various levels, and finally by the European Court of Human Rights itself.

 

In the several judicial decisions rendered in the various levels of justice, the English Courts repeated that the  general degradation process of Charlie’s clinic condition, with also, the progressive and inexorable deterioration of the organs necessary to his vital functions -the first being breathing- lead to believing that all decision relative to an ulterior act in the hope of prolonging a life in similar conditions, should be judged illegitimate, from the moment it is not engaged in the little one’s greatest interest, but rather that it causes the increase, in intensity and throughout time, of the child’s pain and suffering. There exists an experimental therapy called nucleoside currently being developed in the US and suggested a number of times by his parents. The medical counsellors questioned by the judges considered it unfeasible, or even better “futile” compared with the requirement, imposed, of an immediate and definitive execution of the unanimous dispositions of the sentences pronounced until now.

 

It seems everything has come together, in the last six months, to bring “thanatological obstinacy” (illicit death) upon little Charlie; a form of challenge, from the judges and doctors, aiming at ensuring the fastest solution for his case, thus quieting all hope from the parents, crushing any glimpse of possible success of a therapy. Although according to the professor in charge of the ongoing trials in the US and questioned ad hoc by Charlie’s parents it has been experimented only on mice and for a few other diseases different from Charlie’s, it could have, at least theoretically, brought some benefit to his current health condition. It is true that after applying for the authorisation to proceed with the therapeutic trial on Charlie last January, the epileptic encephalopathy from which he suffers caused successive seizures, thus provoking additional serious brain damage; However, what must be discussed here has more to do with the possibility of deciding when and where one puts an end to a defenceless human life. In this regard, it seems appropriate to consider a few crucial points which appear in the global study of the case, under many pragmatic aspects.

 

1/Incurability must never be mistaken with the impossibility to provide care: a person suffering from a disease, incurable in the current state of medicine, is paradoxically the subject who, more than anyone else, is entitled to ask for assistance, care, attention and continuous devotion: this is the main foundation of care ethics, which indeed first target people who are vulnerable, part of a minority, or extremely fragile. And Charlie is the pragmatic living example of that someone entitled to receiving assistance during every stage of his disease, because in a state of necessity, regarding his age and disease. The human face of medicine is manifested precisely through the clinic practice of “taking care” of the life, of the sick, and of the suffering.

 

2/ The right to be the continuous object, or even better, subject of the attention and care of family and third parties, lies in the dignity that all human person, even recently born, even sick and suffering, never ceases to be entitled to.

 

This dignity is founded on the substantial being of mankind, on its power, and not only on its concrete and accidental modernisation. That is what is meant by “purely ontological dignity of a person”, a status which is completely independent from the capacity of actively using the faculties eminently proper to reasonable beings; All it takes is that this reasonable being’s very capacities exist as a current potentiality, and are possibly attainable.

 

3/Artificial nutrition and hydration, via nasogastric probe; under no circumstances can they be considered a treatment. The means used to administer them cannot, since one does not consider therapeutic the fact of giving a newborn baby milk thanks to a bottle. The manufacturing process of the food cannot either, since powdered milk, for example, is not considered therapeutic, though it undergoes a long and completely mechanised industrial process. Neither can it be so on the ground that the parenteral nutrition bag is prescribed by a medical specialist, since, likewise, buying the artificial milk is submitted to the paediatrician’s medical prescription. Water and food do not become medical prescriptions simply because of the fact they are administered artificially. Interrupting them is therefore not like suspending a treatment, but rather leaving to die of hunger and thirst a person who is simply not able to feed on his own.

 

4/ The main thrust which founds informed consent has to do with the principle according to which a patient is never an anonymous individual to whom one applies determined technical knowledge, but rather a conscious and responsible subject which must be summoned to take part in developing whatever is necessary to improve his health and, finally, to reach an objective of healing and care. This requires the person to be involved in the decision-taking which concern him, via a relation of dialogue in order to avoid ending up passively enduring the decisions and choices made by third parties. Young Charlie’s case, on the contrary, proves that bit by bit a dynamic has settled in, greatly separating the medical team from the parents’ will. It is clearly the case with this last refusal with which they are faced, of taking their own son back home for him to die there.

 

5/Under no circumstances can the ban on experimental treatment for Charlie be justified by his current state of suffering. It is absolutely possible the experimental therapy would not have given the expected medical results, but it is also true that Charlie’s sufferings call for a systematic and integral palliative approach which could, hypothetically, have been carried out during the experimentation itself. Excluding any access to this therapy was motivated both in the name of the prognostic of its uselessness -of which the hazard remains uncertain, because absolutely and ordinarily proper to each therapeutic trial- and in the name of the necessity of avoiding him any more pain that prolonging a life in such conditions could have caused: from there, the perspective, even minimal, of letting Charlie live, or even prolongating his life through experimental therapy, was ruled out in the name of avoiding him any further suffering, and this, not thanks to an adequate palliative solution but by the means of a provoked death.

 

6/ The principle of the superior interest of underage children, put in the centre of underage parenting procedures by international documents, that English Courts themselves invoked as a major justification of their decisions; we believe it implies, or worse, legitimises a form of passive euthanasia such as has been decided for little Charlie. We believe his superior interest goes towards a form of care which ensures him the most dignified existence possible, through an appropriate and strategic use of analgesic, thus enabling him to control the pain if, indeed, it should be decided that the experimental protocol already ongoing in the US is an impossible path to go down. This is exactly what Charlie’s parents have been relentlessly asking for until now.

 

7/ The European Court of Human Rights has been unbelievably blind about all the substantive aspects detailed here and even seems to have gone further, assuming a purely procedural attitude, in the name of the principle of the “appreciation margin”. If, on the one hand it notes, in its sentence rendered last 28th June, that in no way did the decisions of the national British courts violate the articles 2, 6, and 8 of the European Convention on Human Rights, thus confirming the formal exactitude of its action, on the other hand it retained the fact that it should not study the content of the question of the suspension of artificial nutrition-hydration-breathing, in the name of the sovereign autonomy of the member states. Doing so would authorise it to regulate, at its own convenience, themes more complicated on an ethical level, as is the case of the passive euthanasia of a newborn baby. And all this, despite the combined dispositions of the articles 2 and 8 of the Convention which very clearly states it is prohibited to deliberately deprive a person of the fundamental right to life.

 

8/ Although it is never mentioned, it is quite clear to everyone that behind this whole case is hidden the idea of effective management of sanitary resources, effectiveness which leads to disposing of them in a way that can only generate a surly waste culture. In a society that will have to face a growing phenomenon in which diseases are increasingly medicalised and in which there are more old-age people, along with the follow up of the degenerative diseases they suffer from, the ever-increasing limitation of resources granted to the health system by the national government encourages a business culture that seeks effectiveness at any cost, thus extending the number of people marginalised because of their short life expectancy and identified as waste that needs to be thrown out if possible.

 

9/Even more worrying is the lightness with which we accept “quality of life” as a paradigm. In other words, the cultural model which leads to the recognition of the non-dignity of certain human existences, completely identified and mistaken with the disease they carry and the suffering that comes with it. Never can a sick person be reduced to his pathology, since no human being ever ceases, and that despite the disease and/or suffering, to be an immense universe of senses which, at every moment, deserves the delicate attention provided by he who unconditionally wishes for his wellbeing, without accepting to consider his life as a second hand existence, because of the sole reality of his poverty, necessity, suffering; such an existence to which causing death would be a favour. And this is even more so for those who cannot, or can no longer, express what they are and what they feel, as is the case for little Charlie.

 

10/ Through the schizophrenic postures related to these new cultural paradigms, one can perceive the ambivalence of all those who, while claiming the freedom of a total access without discrimination to euthanasia, based on the exclusive preponderance of individual autonomy, also sometimes deny other people the autonomy of such a choice, as is the case here. It has been decided only the doctors have the right to take a decision, without any participation from the parents; the ambivalence of those who believe it is right that doctors may allow the parents to spend a bit more time with their son so they may detach from him, allowing them to remain by his side, but who refuse to see how necessary it would also be for surrogate mothers, deprived of their foetus immediately after the birth in order to satisfy the desires of “womb renters”. The ambivalence of those who speak of protecting the life of a subject by harming that very life, which is the foundation of the principle not only of human dignity but also of any other recognition he could receive. The ambivalence of people who fight for the judicial, institutional, international defence of the rights of the weakest, within the framework of democratic regimes, and then willingly agree to the legalisation of euthanasia, performed on the smallest, the weakest, the neediest.

 

[1] This analysis from Cardinal Elio Sgreccia was first published in Italian on http://www.ildonodellavita.it and translated into French by Aude Dugast.