The new scenario deserves particular care and treatments that make specific legislation necessary

On 28 May, a seminar course entitled, “Are there incurable children?”, was held at the Bambino Gesù children’s hospital, located at the top of the Janiculum Hill in Rome. One of the goals of the seminar was to draft a declaration on the rights of the incurable child and to present it at the European Parliament with the support of several children’s hospitals worldwide.

Among the participants was the president of the Pontifical Academy for Life, Mgr. Vincenzo Paglia; member of the European Parliament, Silvia Costa; president of the Institute of International Political Studies (ISPI), Giampietro Massolo; magistrate and teacher of juvenile law at La Sapienza University in Rome, Giuseppe Magno; director of the National Transplant Centre, Alessandro Nanni Costa; director of Paediatrics and Neonatal Resuscitation at “A. Beclere” Medical Centre in Paris, Daniele De Luca; and the bishop of Carpi, Mgr. Francesco Cavina. For the Bambino Gesù Hospital, as well as its president, Mariella Enoc, also present was the scientific director, Bruno Dallapiccola; director of the clinical departments, Nicola Pirozzi; head of Clinical Ethics, Luigi Zucaro; and journalist for Italian newspaper Avvenire, Francesco Ognibene.

The new scenario that makes specific legislation necessary

The Charter issued by the commission (read complete text HERE) starts by describing the new scenario that makes specific legislation necessary. The authors say that, “advances in medicine in recent decades have meant that many serious diseases are now preventable and curable, but they have also transformed serious, often rare, diseases into chronic ones. Thus, patients with congenital disorders, for whom these types of diseases are very often incurable, constitute the new frontiers of Paediatric care.

Moreover, cross-border healthcare mobility, added to advances in new technologies in the medical area have widened the boundaries within which these types of paediatric patients can obtain specialised medical care; thus, parents making use of the internet can consult institutions and clinicians specialised in diagnosing and treating the rare illnesses that afflict their children. This new scenario also creates difficult conditions for understanding between the medical team – often limited by the resources available in their hospitals – and parents wanting the best possible care for their child”.

In this respect, Mgr. Paglia addressed the attendees, saying that “It seems absurd that a judge’s sentence of a judge could overcome the relationship between a parent and his child”, referring to the recent case of Alfie Evans (see HERE).

A global consensus in a difficult matter for children, parents and hospitals

The decision to issue a “Charter of rights of incurable children” aims to create a global consensus on the particular needs of these types of patients (example mitochondrial diseases), their rights and the role of parents in medical decision-making. The declaration hopes to create an international consensus on the rights of children with these types of diseases. This charter will be presented to the European Parliament and to paediatric hospitals in Europe for their approval and has the backing of the Holy See. It can be reduced to the following 10 postulates, which state that:

  1. The child and his/her family have the right to the best relationship possible with doctors and healthcare staff
  2. The child and his/her family have the right to health education
  3. The child and his/her family have the right to get a second opinion
  4. The child and his/her family have the right to receive the most qualified diagnosis
  5. The child has the right to use the best experimental treatment
  6. The child has the right to cross-border healthcare transfers
  7. The child has the right to continuity of care and palliative care
  8. The child is entitled to respect for his/her person, even in the final stage of life, without therapeutic obstinacy
  9. The child and his/her family have the right to psychological and spiritual support.
  10. The child and his/her family have the right to participate in care, research and be admitted to the respective hospital committees. 

We underline the rights we consider of the most import relevance to respect the freedom and autonomy of the children and parents.

Our Observatory considers it right and fitting to have a charter of rights for incurable (chronic) paediatric patients, often with rare diseases that deserve particular care and treatment. If this Charte is approved would avoid international medical and political conflicts as Charlie Gard, Alfie Evans and Ashya King, in our opinion, these cases are only the top of an iceberg.