Commentary
The difficult search for the best interest of Charlie
This is the core of Charlie’s story, and the point that has so far divided doctors, judges and parents: Is the experimental treatment being proposed an aggressive therapy or not?
The final decision of the British courts on Charlie Gard’s case is close, but perhaps not immediate. First, there could be a medical debate with doctors willing to test a therapy that, according to some, opens new possibilities for the rare and incurable genetic disease that is leading Charlie to death.
In any case, it has not been said that the decision already taken, against her parents’ wishes, to unplug the life support machines will be reversed.
We do not find conflicting interests at the base of this incident, with one faction pro-life and another pro-death. The doctors at the Great Ormond Street Hospital, judges and Charlie’s parents are actually divided on the interpretation of the same point: What is Charlie’s “best interest?”
The legal systems differ in the details and applications. But eventually they converge in the sense that the objective is to look for the patient’s best interest. The case of Teresa Schiavo in the United States, the cases of Welby and Englaro in Italy, and now Charlie Gard in Britain, prove it. The common ground is in the principle that medical care must not result in aggressive therapy.
It is a well-established principle. The code of medical ethics states in Article 16 that the physician “does not undertake nor insist on clinically inappropriate and ethically out of proportion diagnostic procedures and therapeutic interventions, from which we can not validly expect genuine health benefits and/or an improved quality of life.”
The Catechism of the Catholic Church (III.2.2278) states that “the interruption of medical procedures that are burdensome, dangerous, extraordinary or disproportionate to the expected outcome can be legitimate. In this case, “aggressive therapy” can be waived. It is not our will to cause death; we agree not to impede it.”
Aggressive treatment cannot and should not be practiced. And it is a principle that we can connect to Article 32 of the Italian Constitution, which establishes an absolute limit on the respect for the human person in protecting the right to health.
It is precisely this respect that is not kept in cases of aggressive measures.
The same applies to the British system, and it is summed up in the “best interest” formula. This is the core of Charlie’s story, and the point that has so far divided doctors, judges and parents: Is the experimental treatment being proposed an aggressive therapy or not?
We must consider at least three points.
First, may the medical treatment in question be effective in the specific case of Charlie?
Second, how severe is the damage already suffered by Charlie?
Third, if it were effective, would the treatment allow for a recovery, or might it only prevent further damage?
From the information available, on the first point, some believe, although more evidence is needed, that the treatment could be effective; on the second and third points, there is an essentially unanimous medical opinion that the brain and muscle damage suffered is very serious, and there is no chance of recovery. Even the letter from the Italian researchers of Bambino Gesù center does not go beyond a possibility on the first point.
On the third, only the American neurologist who recently joined the case does not exclude the possibility of a partial recovery.
This is the scenario the judges face, summoned to judge on the differing positions between the doctors and the ethics committee of the Great Ormond Street and the express will of his parents.
Here is the most difficult question. If parents want to keep the machines on, how can the hospital go against their will? But this is answered with another question: Are we sure that their opinion is really the one most oriented to Charlie’s “best interest”? Or is it otherwise biased by their own parental love?
Until a few decades ago, there was no medical knowledge and technology for extending life by artificial means. Without the internet, we would not have the overall resonance that is crucial today in Charlie’s case. New problems of the new world. But we can imagine that many vicissitudes of life and death will still consume a few in private pain.
It seems fairer.
Originally published at https://ilmanifesto.it/la-difficile-ricerca-del-miglior-interesse-di-charlie/ on 2017-07-16