IN MEMORY OF ALFIE, WE MUST PROVIDE DIGNITY TO THE SICK BECAUSE THERE ARE NO INCURABLE DISEASES

Ideological fight about the life of peopel, about the life of children. Are we arrived at this point ?! I always thought certain principles were safe and felt by the common sense, but the current reality is sadly different. We are witnessing a one-way self-determination, only towards death. Is it possible that today the parents of a sick child, who is unable to recover, don’t have the right to choose life? As Mariella Enoc said few days ago: “Cannot be a law that imposes on them, for substantially economic reasons, that their child can no longer live”. The thought automatically returns to the various English cases (and not only) that we have treated in recent years. My memories go to Alfie and his family, to the great torment they have had to face. All these moments of pain and despair echo inside me. But not only in me, I’m sure that echo is listen in each of you too – thinking back to those little friends – make relive old feelings. Enoc relived those days of fully and intensely great pain at the sidelines of the conference “The child with incurable disease. Bioethical reflections and palliative care”. “When I went to London for Alfie’s case – said the president of the “Child Jesus Hospital” in Rome – I heard the screams of the parents when the child was unplugged from the respirators. Inside me those screams remained. Parents have the right to choose for their children. Without therapeutic persistence, because in these cases parents must be accompanied towards the most humane choice, but parents have the right to choose.”

This is precisely the point. Although in Italy the law 38/2010 was approved about palliative care “intended for a fragile patient or a patient suffering from an incurable and chronic disease”, as stated in the final document 10/04/19 of the investigation of the XII Commission of the Chamber of the Deputies approved unanimously, the current death ideology aims at something else, pointing to the lower point of self-determination.

In this difficult time, there are many urgencies that our country must face, from the economica and energetic crisis to the aftermath pandemic, from new poverty to the war in Europe, up to the election of a new government. Despite everything, I believe that the palliative care theme – especially pediatric ones – is a priority issue to be urgently supported, if we want to consider ourselves a civilized Country. I refer again at the words of Enoc about palliative care “don’t mean accompanying to death but creating a path that takes care of the child – and not only – in all his needs and at the same time take care of his family. Also brothers and sisters must be taken into great consideration, because often they will suffer serious consequences.” A challenge of civilization, the one about palliative care. A challenge that the new Italian government, which will be formed in the next few days, will absolutely have to bear. Glimmers of hope come from the city of Brescia: from November will open the School of Specialization in Medicine and Palliative Care, established this year in Italy. Act on people culture and training in this matter. Give value to a discipline that is now indispensable. Give dignity to the sick by taking away the pain, because there are no incurable diseases.

by: Emmanuele Di Leo, President of Steadfast