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The “ballet” of clinicians and judges and the Ballad of Adam Henry

Genesis 9.4 – After the flood, he gave Noah and his family the permission to include

animal meat in their food but commanded not to eat blood.

Leviticus 17:14 – You must not eat the blood of any flesh, because the soul of all sorts of

meat is its blood. Whoever eats it will be cut off.

The judge plays an important role. As in the sentence on the case of Fabiano Antoniani and Marco Cappato, the doctors, patients and their relational networks leave the scene, and the decisions of the Law come into play. The latter, in a difficult case, in a country like ours that fights for life at any cost, as sometimes happens in “literature”.

By “literature” I mean not only that of legal cases, but also the literary novel. Potentially real facts inspire us, or that will likely happen, and that happened in the pen of the visionary writer Ian McEwan, with his The Children Act. In Italian, the title was translated as La ballata di Adam Henry (Adam Henry’s Ballad), perhaps because the literal translation it would have been too complicated for our audience.

Let’s go into the story: Judge Fiona Maye, who works for the Juvenile Court in London, deals with parental authority in matters concerning both social and health aspects, for example when parents do not agree with the choice of civil services – as can happen in cases of abuse or violence – or with therapeutic decisions. In one of the followed cases, Judge Maye makes the Solomonic choice of separating two newborn Siamese twins, knowing that one will live and the other will die, against the parents’ decision, which would have left fate in the hands of an evil Mother Nature. Fiona chooses to save one life and is attacked by the press, the public opinion that calls her “murderer”. This happens in contemporary England. To inspire McEwan was a magistrate who reported the case of a minor witness of Jehovah with whom, one evening, he was talking about football to create a bond; he then studied many sentences of the juvenile court and personally followed them – an inspired and informed writer.

Fiona Maye is tormented by marriage not consummated for too long and by her husband, a Professor, who has a doctoral student as a lover. But the masculine youth will soon be knocking on Fiona’s door: although she is a successful woman with a life that is crumbling, she has many certainties, such as music, the Christmas concert. The social mask, in a London of the lawyers’ establishment, does not allow her to manifest any weakness, especially when a particular case comes to her: a minor boy with leukaemia, whose parents refuse a blood transfusion, as Jehovah’s Witnesses.

A straightforward question, would say many clinicians: a few years ago I was in a training room in a Northern Italy hospital, when – addressing the issue of parents’ informed consent – I was told, “Oh yes, with the witnesses of Jehovah’s children begins the ballet of parental authority taken from the judge and then entrusted to the doctor “. In the book, there is no mention of “ballet”: who knows why the doctors used the word ballet as if to say a dynamic dance step, like a show in the theatre, and something ending well.

The discussion in court is convulsive. Doctors say that without transfusion, the boy will face a cruel death. On the other hand, the parents play on the hypocrisy of the three months missing to adult age: a formal question, because the boy wants to behave (and therefore die) according to the values of Jehovah’s religion, also to shows as strong and as a believer in God and in a world better than ours. Thus, writes Adam:

The soul sank into a black hole

When Satan, the smith, the fierce warrior,

He began to beat my heart without ceasing

Delivering myself to a fate of pain.

Then Satan made a gold plate

On whose cliffs I saw love shine,

a path that God flooded with light

Bright where my soul found peace.

In the Ballad of Adam Henry, his beliefs and wills are explicit: Satan creator of the disease, God, the place of peace. Fiona, instead of acting with the impulse of the “ballet” removing parental authority, decides to go to the hospital to talk to Adam. The boy is handsome, intelligent, lively, cultured, and writes poetry and ballads. Since being hospitalized, he has learned to play the violin in four weeks: Fiona is excited, fascinated, singing and music do the rest.

They sing together. Fiona returns to the court and says that this surprising intelligence, vitality and poetics cannot be suppressed in the name of religion: she removes parental authority to allow blood transfusion and subsequent therapies.

Months pass until Fiona receives a letter of thanks and love fantasies from Adam, who also writes that his parents were happy that someone had decided to save him for them.

But this is not enough to alleviate his sense of guilt for having been contaminated: the boy leaves his community, no longer attends the ceremonies and begins to follow Fiona, to pursue her in Scotland where he will ask her to go and live with her. The judge will tell him to learn to enjoy his regained time again and to disappear from his life forever. Then he kisses him on the lips, in an instinct held back from the first moment of the meeting, to turn around and go.

Life seems to resume the normal rhythm between hearings and rehearsals for the Christmas concert; the husband returns home, sleeping in a separate room. On the night of the Christmas concert, just before Fiona starts singing, she receives a note: leukaemia has resumed its journey inside Adam, and he, as an adult, refused the transfusion. He died: from the letters sent to Fiona, and left unanswered, it seemed an act of voluntary suicide – “may those who sink the cross deprive themselves of life”, the last line of letters. Then, with her husband, the confession and the shame of not having helped him, when in every word he wrote, she found a subdued request for help. The law was not enough to inject confidence in life and lightness, distracting him from his feelings of guilt. The atheist McEwan, once again, expresses the limits of religion, but also underlines the limits of justice; saved a boy, you can’t leave him to return to the community alone.

Science fiction? Narrative of the absurd? In September 2019, a 70-year-old woman in Jehovah’s Witness in Italy refuses the transfusion and lets herself die: for doctors, a failure that ends up in all the newspapers. Another example, from June 2018: Grace, one of Jehovah’s witnesses for years, after a delicate surgical operation in which a blood transfusion was necessary, was marginalized by her community. And also the three daughters, followers of Jehovah, have broken any relationship with their mother, guilty of choosing to live.

And this is real news: there is no longer a need for a judge who decides in this case, what many call “voluntary suicide” for this community becomes a pure sacrificial act, which will bring salvation.

Mc Ewan, like me, does not take any position: the anthropologist David Napier talks about the need to understand cultural contexts, and the importance that narrative medicine plays to understand the values ​​of patients and professionals – and if an alignment is possible, a concordance, sometimes triangulated by a judge, sometimes directly negotiated between the parties. Yet the reality is even more complex than the theory of narrative medicine: Adam, saved by the judge, then sacrificed himself for “his cause”, “wanting to die” and not “not wanting to live anymore”. No possibility of convergence, perhaps due to a too brief interlude with the part of justice.

This is why the reasoning with other cultures or religious orientations different from ours is a “ballad” and not a “ballet”: it cannot be reduced to a theatrical masquerade, as some clinicians say – perhaps precisely because they do not come into contact with their deeper suffering, that of losing a human life that could be saved according to Western secular culture.

The ballad is often a musical piece played with a slow tempo, in instrumental genre or with a sentimental topic text, or with strong narrative content.

As grass is life, take it as it comes;

but I was young and foolish and now crying is my only good.

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Written by

Epidemiologist and counselor – 30 years of professional life in health care. Classic humanistic background, including the study of Latin and ancient Greek, followed by scientific academic studies, chemistry and pharmacology. First years of career, in private international environment. I worked in medical research, moved to health care organization, getting academic specialization in Epidemiology. Later, in consultancy and health care education. Counselor with transactional analysis orientation. Currently, director of Innovation in Health Care Area of Fondazione ISTUD, an independent not for profit Italian Business School with an humanistic approach acknowledged by the Italian Ministry of Researech.. Active member of the board of Italian Society of Narrative Medicine, tenured professor of Narrative Medicine at Hunimed, Milan, and in 2016, referee for World Health Organization for “Narrative Method in Public Health.” Writer of the book; “Narrative medicine: Bridging the gap between Evidence Based care and Medical Humanities,” edited with Springer and of international publications on narrative medicine in scientific journals. Last book “The Languages of care in narrative medicine: words, space and sounds in the healthcare ecosystem”. Lecturer in different international contexts from Academy to Public and Private Foundations.

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