Bambino Gesù Children’s Hospital is currently proposing a “Charter of Rights of Incurable Children” for European hospitals, inspired by the “International Charter on Children’s Rights in Hospital”, but “updated in the light of medical progress and the latest European directives”.
The Vatican’s children’s hospital, Bambino Gesù, offered to treat Charlie Gard and then Alfie Evans following a transfer from Alder Hey Children’s Hospital in Liverpool. Both little boys have since died after transfer requests were refused. “I had asked the Chairman and Chief Executive of Alder Hey Hospital to sign an agreement between Bambino Gesù and his hospital. Unfortunately, the request was turned down”, laments Mariella Enoc, Director of Bambino Gesù. “But I hope that this agreement will one day come to fruition with many other hospitals, including European establishments”.
The Charter seeks to protect the rights of terminally ill children, who are entitled to basic care—food and water—during the terminal phase. The 10 articles of the Charter are as follows:
- A“therapeutic alliance” between the patient’s family and the doctor, with “full participation” in the treatment strategy,
- the right to obtain a “second opinion” and in-depth diagnosis,
- the right to choose a health establishment of their choice, including those in other countries,
- access to experimental drugs and palliative care,
- the right to psychological and spiritual support.
This charter is “intended to provide better support for these children and to avoid ‘ideological and legal disputes’, as in the case of Alfie Evans and Charlie Gard”. On Monday, 28 May, Bambino Gesù Hospital organised a seminar, bringing together doctors, scientists, bioethicists, Italian politicians and priests to create an “international network” and standards to be followed in the event of litigation. Mariella Enoc intends to circulate this charter: “We will pass it through the European Parliament, to all the Member States”, she announced, and then to “all those wishing to get involved, such as parent or patient associations and other paediatric hospitals in Europe and worldwide”.
In his speech, Msgr Paglia, President of the Pontifical Academy for Life, emphasised that: “It is essential to come together to rediscover this therapeutic alliance or alliance of love between doctors, family members, patients and friends, to support and never give up on those who are terminally ill…”. The director of the paediatric and neonatal intensive care unit at Hôpital Antoine-Béclère in Paris, Daniele De Luca, described the various therapeutic options found in European countries and pointed out that, in France, there is a marked difference in approach depending on the region, establishment or doctor, with special focus on the significance “of training doctors and spreading this culture”.
Zenit, Marina Droujinina (29/05/2018)
Aleteia, Isabelle Cousturié (29/05/2018)