The opening ceremony of the first EAPC paediatric palliative care congress proved to be an inspiring evening for the more than 300 participants who attended. The congress, being held at the beautiful venue of the Acquario Romano, has brought together people passionate about children’s palliative care from 5 continents and from all spheres within the field, including parents.
The welcome address was given by Silvia Lefebvre D’Ovido, president of the Fondazione Maruzza Lefebvre D’Ovido Onlus as wella s Renato Balduzzi from the Italian Ministry of Health.
The participants heard the moving testimony of Omar Leone, the father of a 2 year old child who passed away as the result of a brain tumour. Omar set the tone for the rest of the evening by speaking passionately of the need for doctors to remember that they are treating people and asked that they learn how best to communicate with their patients and the families. He said that while doctors should be commended for fighting so hard to defeat the disease, they should still remember that their ‘battleground’ is a child. He went on to describe how the last five days of his son’s life were made so much better once he was admitted to a children’s hospice. For the first time people provided care without looking at their watches and bothered to ask them the simple question: ‘How are you?’
After this, a young woman, Claudia Robustelli, spoke of the challenges of living with a very rare disease and of the importance of psychological care and support for children and families faced with challenging and incurable diseases.
Three awards were presented during the course of the evening. These were the Vittorio Ventafridda Awards, created in honour of the pioneer of palliative care in Europe and presented in recognition of outstanding initiatives and enterprises that have made a difference to the quality of life of patients and their families. The two worthy recipients of this award were Dr Anna Garchakova, founder and director of the Belarusian Children’s Hospice, and Dr Richard Hain, who has co-authored one of the most authoritative books on paediatric palliative care – The Oxford Textbook of Palliative Care for Children. Dr Franca Benini was awarded the 2012 No Pain for Children Award for excellence in palliative care.
A number of the illustrious speakers praised the Italian Government for the passing of Act 38, an excellent law which guarantees the right of every child to receive palliative care. To round off a most enlightening evening, Dr Kathy Foley of the Open Society Foundation spoke of palliative care as a child’s right and Dr Richard Hain gave the audience thought-provoking insight into ethics in paediatric palliative care.
If the opening is any indication of the congress to follow, the participants can look forward to a stimulating two days of presentations.
Leave a Reply